UC to J-Pouch Story

Photos 1: Colectomy

Photos of the first Surgery of 2, The Total Proctocolectomy, with Ileoanal anastomosis formation, and temporary ileostomy 

Medicial/Accurate:  Surgery explained with text and images

Personal:  Surgery explained why Mark had it and summary of procedures (good to read FIRST if you are new to understanding the surgeries)

 

**My story is told in these photos, the comments were all documented both photos and most the journaling by Megan (my partner of 14 years) during the time because we wanted to capture what was happening and feeling and experiencing at that moment.  We also wanted to show not only my journey, but also how the spouse can help healing through support and acceptance.

Pic1. Stoma Marking shown Night Before Step 1 Surgery

Stoma Marking Night Before Step 1

Here is Mark the night before surgery. The blue mark on his belly was done in a pre-op visit a few days before, the stoma nurse selected this location for Mark’s for his temporary loop ileostomy. This is so the surgeon knows where to pull his stoma through. 

**We are adding this note after having this picture up for about 10 months and the comments we’ve received about how Mark looks fit in this photo, therefore his UC must not have been bad.  This is really complex to address – but at the time of surgery Mark was on prednisone and humira, he was having 12-20 BMs a day, urgent with no control, bleeding, fatigue, etc…He weighed 125 pounds in this photo (post surgery weight 140!).  Mark works construction so his body stayed fit most of the time, but his lowest UC weight was 100 pounds, scary times.  Also, before the surgery his GI gave him two pieces of advice: (1) Get high cardio before surgery you need to be in good shape and have a strong heart to recovery faster – so every day no matter how exhausted he was after work he would come home and skateboard for atleast an hour to get in cardio. It was almost spooky how driven he was to do the cardio although he was sick and tired.  (2) High protein diet. Protein helps the tissue in our body generate so it helps with healing. And yes, we did protein shakes for him and then made sure our diet was high protein.**

 

 

Pic 2: Mark with his mom, Carol, right before going into the 1st surgery

Mark with Mom

He was calm and ready to get rid of his worthless colon!  Mark and his Mom prior to surgery, they put Mark under a heated blanket that is why he looks so fluffy.  He wasn’t drugged here yet, but he doesn’t remember this photo being taken so the drugs that they soon gave him erased some of the early memories too.  I was really happy to have his Mom there, we were able to give each other support and that was really nice. She was nervous, I was nervous so it was good to have the support for each other.

 If you are a spouse and you are reading this the following note is Megan’s take on Mark’s Mom in this and what I learned. As the wife I knew that during Mark’s surgeries (especially the 1st) that I needed to leave for good chunks of time so that Mark’s Mom could have him alone. I realized although he was 32 years old, he was still her “boy” and for her to heal, I learned she needed to do the things that the wife is now doing.  I found when I left she would fix his sheets, clean up the room, help with stuff, etc….Maybe I’m just be self-gratiutious but I felt it brought us closer and it let them have their bond. 

 

Pic3: Mark just out of surgery

He was in surgery for 4.5 hours, and in recovery for 3 hours, then we were allowed to see him.    The surgeon came out and talked with us after the surgery was done, we didn’t have anyone come out in the middle of surgery.  And about an hour after we talked with the surgeon the anthesologist came out and told us he was awake and doing well.  It was nice that they kept us well informed and everyone greeted us with smiles and warmth. 

This first night was really incredible – we have had a long journey to get to the surgery, and there were times that were not so easy (to say the least). On the night right after his surgery, he was awake for about 3 hours, still loopy by not out of his head by any means. He had a private room, and his nurse that night was like a dream, she was so quiet and gentle, the hospital was quiet for nighttime, all the family was gone, and it was just him and me, and that night it was like the past 7 years of UC were gone and we began to heal. All he wanted was to be touched gently, he wanted his feet, legs, arms, head, shoulders rubbed. And together that night we checked out his belly, the incisions, the stoma. It was just a very gentle and healing night that really set the stage for us to embark on our new life. I was so exhausted from the day, and now that it was over, there was sense of calm that felt almost surreal, I’ve not felt that before.

 

 

 

Pic4: Mark’s belly and stoma no bandage

 

Here is the belly the day after surgery. Let us explain what you see here.  His incisions were glued closed, so he doesn’t have to go in for suture removal.  There were 5  lapro incisions made:

2 North incisions (one is hidden under stoma bag by belly button).

1 South incision near the pelvic region where the colon and rectum were removed.

1 East where you can see the Jackson Pratt drain tube coming out of his belly with fluid mixed with leftover blood is where his temporary drain was.  What you see in this photos is right after surgery and draining lots of fluid out, his isn’t actively bleeding and the fluid in the belly cavity has a name that we can’t remember, he was told this fluid was totally normal and it became much less as the days went on.  He had the drain removed on day 5 (not painful to remove and there was a lot of tube in his belly.  A resident surgeon just removed it right there in his hospital room bed).  

1 West where the temporary stoma is located. The stoma looks like a peeled cherry tomato and it has no feeling since there are no nerve endings in the small intenstine. The stoma is the small intestine that has a slit in it to allow waste to flow into his ostomy bag.   We just keep staring at the stoma, it is fascinating. 

Pic 5:  JP Drain Image

The little bottle on bed is the JP drain bottle that has a tube connecting to the inside the body where the woundcavity is located.  The JP Drain catches the left over fluid produced in the area where surgery occured.  The nurses empy it out periodically through the day.  

This picture is a donation from another Jpoucher, (RP)  she had her surgery in 2006, with some abcess and fistula complications.  This is one of her JP Drains she was generous enough to share with us so that we could complete the photos.  She had multiple drains through her recovery b/c she had some complications the one not pictured she had for about 3 months – and she explains  the one we see in the above photo with her quote below:  

“(the left one I only had about 14 days), it got to be really nasty smelling as well and I would use the odor eliminating liquid they give you for the stoma bag sometimes inside the drain which wasnt easy to insert and it was messy. I also tried to wrap the jp in saran wrap, but none of that seemed to work … My Dr seemed to think that was from the infection inside my abdomen that was not standard drainage. The smell lasted about 4 weeks and once I started healing the smell got better.”  

Mark’s drain didn’t smell that we noticed, but he did have it only for 5 days so that probably made a difference. 

We wanted to add a picture of the JP Drain so that others can understand what is at the end of the mystery tube coming out of Mark’s stomach on the right side of photo image. 

Pic 6:  2 piece ostomy bag not attached

 

 Here is the bag prior to being put over his stoma.  You can see it is a two piece (there is an option of 1 or 2 piece).  Mark’s is two piece b/c his stoma is smallish and so this helps pop it out more.  Here you can see the scale as well.  Bags come in all different varietis and some are not clear, etc…..  The clip on the end (long tan thing at end of bag, he uses this to drain throughout the day, he is draining every 2 hours or so.  He only changes the appliance (i.e. the full bag set up) twice a week).  There are tons of different bags for different types of stomas, Mark’s stoma is loop ileostomy which means it is smallish since it is temporary.

We’ve recently learned from another jpoucher that there are bag options where there isn’t a clip at the bottom but velcro.  If you aren’t happy with your hospital register bag and equipment, do some searching because there are MANY bag options. 

Pic 7: ostomy bag with green poop

 Here is a fairly graphic photo of Stumpy in action.  The bag is located towards the inside of his leg so you can empty the bag in the toilet without hassle.  This bag is really full, normally you don’t leave it so full b/c it would be heavy and run the risks of ‘blow out’.   Mark’s hand is by the bag to give you an idea of scale.  In a moment of comic genius our friends Marianne and George saw this photo while Mark was in the hospital (sending photos to friends via cell phones – we were all curious what this sucker was going to look like). And they sent us a picture back, or Marianne’s hands next to a poopy diaper freshly made by their baby Lil’ G.  I wish we still had that photo!  You must be able to find humor in this situation if you are going through it.   

Pic 8: stoma, green poop and thumb for scale

 Mark started creating output from Stumpy the Stoma the following day after surgery.  It was pure liquid and green (b/c he was on a liquid diet, not sure why it was green though – I know the drs. explained why but can’t recall now).    I put my finger in the picture so you can have an idea of scale.

Pic 9: I’m walking .. yes indeed…Day 2 night

 The same advice from other jpouchers was to ‘walk, walk, walk’ to get out of the hospital sooner and speed up the healing process. There were many walks around the surgery/oncology floor.  There were even a few late night walks when Mark couldn’t sleep and had ancy legs, those were fun walks b/c the floor was quiet but usually there was someone else up walking too).  With a private room, you can have a guest stay the night with you which for this type of surgery is really nice since you are largely unable to take care of yourself easily (can’t put on socks, etc).  And the nurses do a great job taking care of you, but you do need someone around to straigthen your gown, sheets, and make sure the cathedar is draining well and not backing up.  You know, all the stuff a loved one can help with.
 
There was another young man on the floor (in his 30s) and he had gone in for an appendectomy (sp?) and found out he had cancer that was hitting part of his colon. Now he has part of his colon missing, and it all happened to him overnight basically. He was having a hard recovery physically and it seemed he had little social support b/c he rarely had visitors (you get to know the others on your floor from doing laps).  I was wearing an OSU sweatshirt and he had gone to OSU, and from there he took a shine to us, and us to him. It was a reminder of the awesome support group we have, and how thankful we are for everyone who has supported .  
Pic 10: Walking with foley on robe Day 4

 Here he is upgraded to walking without the stand since he has no IV but he still has his foley catheder, nevertheless, look at that grin.   And the art of getting the catheder to work right, talk  about a challenge (his cathedar would not drain into the foley bag and it would get backed up into the tube which made him feel really uncomfortable like he had to pee because the urine was back up, not a big detail but did take time to figure out).  He was such a good patient b/c he was so patient with all of it, and he patient with me trying to document the process of surgery, etc. We felt very alone going into the surgery and wanted to document the journey for others in our situation.   His positive attitude was incredible during this whole process and made it incredibly easy to care for him through this.

 Pic11: Dressed in normal clothesFINALLY! 

 Finally in regular clothes right after the foley (i.e. catheder) came out!  Day 4.  He didn’t mind the catheder coming out, it happened quickly and was done by a nurse right there in the hospital room bed.  It was explained to us that this surgery can traumatize the bladder since it is near the surgery work area, and it takes time for the bladder to ‘wake up’, so they didn’t want to rush removing the catheder.   Mark was lucky b/c his bladder woke right up after the catheder was removed, and he was a peeing machine right away, but it was weird since he hasn’t just pee’d in many years since he always went w/ his frequent BM’s. 

 

Pic 13:  Stoma, Incisions, Day 8

Here is a shot of the belly and stoma on Day 8.  You can see he has a bit of irration from the adhesive of the bag wafer (not sure how to treat that, any suggestions are welcome :)   

Oh, the question we asked was how much does the large intestine and rectum weigh? Only a few pounds is the answer, it is about 5 feet long but light weight.  And no, after the colon is removed the stomach does not collapse and fall in, a person without their colon does not look like they have no colon!  

Again, these are his 5 incisions, and his stoma will change size b/c it is swollen right now. Apparently stomas change size as your weight fluctuates.  Stomas bleed some when you clean them or touch them, but it doesn’t hurt since it has no nerve endings.  

At the south incision in the pelvic region there is some swelling on the left side around the incision, that is fluid left over that was once draining from the drain tube.  It makes a funny hollow sound when he taps on it. The doctors said if the incision becomes red or painful to come in and have it drained, so far not red or painful. 

Pic 14:  Clean bag and dressed, Day 8

8 Days after surgery showing Ileostomy Bag

Spending some time recovering, he is clean out of the shower and doing well on Day 8.    He has lost 7 pounds since he entered the hospital, so he is a bit thinner than what he was in the first picture.  In the hospital his first poop output was green, now it is brownin’ up, but seems to change color with the food.  And the smell when he empties the bag is something special, it has to do with the waste coming straight from the small intenstine and the digestive enzymes.   Now, you must understand that the stoma is a living thing, it is his insides now on the outside, and this sucker breathes, moves around and really has its own identity. This is a unique experience gettting to see how our bodies constantly our creating waste, but also the meaning of ‘alive on the inside’ has new meaning when you see our insides working.

Learning to change the bag at home after surgery was interesting and was definately a team effort. Mark did it on his own but until he was better at the whole changing thing, I would help to try to get the flange on before the stoma spit up. We learned from Jason PA (see Photo Set 2) that you can wrap the stoma in a wet cold paper towel that will hold any poop while you clean the skin, etc..Also, have you heard about the marshmellow trick? (Marks favorite part of the stoma was that before bag change outs he would 3-5 big marshmellows they stop you up for about a half hour. He didn’t do this till a few weeks after surgery though and he was eating more normal. JUST DON’T GO THROUGH THIS ALONE – Let someone you love help you with this transition, its a big deal and easier to handle if you can share the surrealness of the situation with someone you love.

If you are so curious we do have a live action photo of the poop machine in action that I recorded on the cell phone, very ;ow resolution but if you gotta see how the things moves and works before you are proud owner of your own you can watch this very short video of stumpy pooping at around 20 seconds.

Update day 9:  I feel exhausted still, today was the first day I took a short drive in the car (someone else drove) and was exhausted and uncomfortable.  My lower back hurts from laying down since my sleeping positions are limited still.  I’ve been walking and walking but still get tired.   My poop is thickening up, but it is really a reflection of what I eat. I changed from a 2 piece bag to a 1 piece bag and that is working better for me now. 

Update day 16:  No complications, and I am so thankful, and I attribute this to my awesome surgeon and his possee.  I’m not needing to nap, and I’m interested in going and being busy. It is a new concept to leave the house without worrying about ‘bathroom’ needs.  And I did my first drain of the bag while out running errands, it wasn’t too bad, only took 2 minutes or so, I’m sorry to have unleased the stench on the general public.   I do feel like I’m in ‘recovery’ where I don’t feel UC anymore but I do get worn out, and the reality of living with my stoma has kicked in. At first, I was free of the disease which is/was incredible, but now, there is the stoma. And as thankful as I am for my new renewed health, this will take some getting used to, I mean, my small instetine is hanging OUTSIDE my body and I’m pooping off my belly.  Takes some getting used to, but UC was much much worse.

**A common question that we were worried about and is often asked is about Mark’s ability to obtain/maintain an erection or issues with ED.  Mark hasn’t had any issues with erections be it getting them or maintaining them. In fact still in the hospital all bits were wanting to work even though the catheder was in the way (that was a good sign, we cheered – even the surgeon asked in a follow up about erections).  We loosely recall talking with the surgeon that often issues with ED are emotional in nature more than physical after this type of surgery. Although the surgeon does have to be careful not to cause damage. I haven’t had my sperm count tested yet but was told it should refresh itself to healthy sperm count (hopefully) 2 months after surgery or so.

Next step in recovery process: 
Step 2 surgery is pending until his jpouch heals, the doctors will decide around week 10 in recovery if he is ready for Step 2 or not.  Once he has step 2, the stoma will be pulled back into his body (so no more external bag) and he will begin using his jpouch (small intestine reconstructed and connected to anus for draining of waste). Here is the link for the next set of photos of living with the ileostomy (the 3 months between his step 1 & 2 surgery http://ucstory.wordpress.com/surgery-2-inbetween-surgeries/  and here is the link to the takedown photos: http://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/

 © 2008 All Rights Reserved

 © 2008 All Rights Reserved

89 Responses to “Photos 1: Colectomy”

  1. Suzie Walker said

    Thank you for sharing this information. How old is your son? My son (residing in California with his dad) is having an illeostomy tomorrow at Cedar Sinai Hospital. He is 25 years old. Diagnosed at age 10. Has had 2 surgeries (resection) and a lot of problems. On a lot of medications. I just spoke with him (I live in Florida and just found out today he is having surgery) and his spirits are good! I told him about reading this. He understands the procedure (his may be permanent) but at this point wants to be able to feel good and stay out of the hospital. He goes in at least 4 times per year for the past 4 years.

    Thank you again. My prayers are for all with Crohn’s. It is an awful disease.

    Suzie Walker

  2. mdhilton said

    Hi Suzie,

    I hope your son has a speedy recovery from surgery so that he can get back to his old healthy self and get on with his life. I am 32 now and was sick from 24-31 years old with ulcerative colitis. Megan is my wife, not my Mom, but I understand your concern and your son is lucky to have a good support system. If he is headed into surgery, we all found http://www.jpouch.org the best support group. It is positive, informative and a REALLY helpful for all stages of dealing with this surgery/recovery and living with new jpouch or ileostomy.

    Mark

  3. Tricia Stoddard said

    Thank you, SO MUCH, for sharing your journey (complete with photos) with us. My husband is undoing surgery this coming week for rectal cancer and – as thankful as he is that surgery is an option with a very positive prognosis – he is absolutely beside himself with regard to the ileostomy. While I know he’ll get through it, he is scared witless. He is normally such a positive dynamo – this is really troubling him. Without going into all of the psychological aspects, your story has helped ME to understand what we’re about to encounter together. I will, certainly, be there and support him in every way I can; I only hope I can measure up to the care and support you have given Mark through his UC and surgery. You have been extremely courageous, like only a mom can be I think – but you have been an inspiration to me. Mark is lucky to have a medical team that has worked their own special kind of magic for him – and he’s lucky to have the support of his mom and, obviously, scads of friends. I wish you both well and, because having viewed and read this, I am encouraged that our journey will not be as dreadful as my husband is thinking it’s going to be.
    AGAIN – THANK YOU.

  4. Tricia Stoddard said

    I’m sorry – I meant to say my husband is “undergoing” surgery – not undoing! better learn to use spellcheck regularly!

  5. Megan said

    Hi Tricia,

    Sorry to hear about your husbands struggles and difficult diagnosis. He is fortunate to have you and have you doing the research and being willing to support him. I know that with Mark is took time to accept the surgery and the upcoming changes to his body. But for us we probably had more time before the surgery than your husband since his cancer diagnosis was likely unexpected and surgery arised quickly. Part of the reason for the photos and journaling was to help Mark and all of us cope with his changes by getting it out there and not hiding the reality. Also, thanks for your support of our site, and the picture above is indeed of Mark’s Mom and Mark, but on the front page is of Me and Mark and I am his partner of 14 years, and I am the voice in the surgery journaling. So, I understand your struggle as the wife, just be sure to take care of you in this process! If you feel sad, blue, anxious or anything get help so that you can stay strong for him and your family.

    Will he have a permanent ileo or are the doctors doinga jpouch?

    Megan

  6. Mark & Megan,

    thank you for sharing this information to someone like me who has UC; it takes great courage and tremendous love to document your experience and share it with strangers in the hope that it will make someone’s life better.

    Thank you from the bottom of my heart.

    NBT

  7. [...] http://jpouch.org/. And, I found a photos and blog of someone who kindly shared her photo after the temporary ileostomy. Thank you so much [...]

  8. bellyluv0sofine said

    Wow, this is difficult to read because I know that I will have this surgery soon. Thank you both, Mark and Meghan for sharing such intimate details of your story. While I am a little frightened at all the complications of what what can go wrong, it is nice to see someone so young and healthy survive this. This is such a wonderful gift you have given to other sufferers. Knowledge is power and I feel a little more at ease reading your story. From the bottom of my heart, truly, thank you!!

    Carmen

  9. mark said

    Hi Carmen,

    When is your surgery? And are you having a two step lapro like Mark? Sounds sill to say to you now, but you’ll be back belly dancing before you know it (and I mean it). Just be prepared for the stoma so that when you wake up from surgery and pull up our robe you are willing to accept your stoma (be sure to name it). Our friends named Mark’s “Stumpy” but the best two names of stomas I’ve heard are “Lil’ Mofo” and “WeeWillie” – Also, be sure to get out of that bed as soon as you can (day after surgery) and walk. That first night right out of surgery Mark was only able to dangle his feet off the side of the bed, but he was wanted to walk since he had heard it meant a speedier recovery. His pain wasn’t too bad, so don’t fear pain, and he was lucky and had few complications. But like he likes to tell the story, any complications and surgery pains didn’t matter because the very day after surgery he didn’t feel sick anymore. Whats funny is the woman in this UC to jpouch surgery video says almost the same thing Mark did: http://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

    Do visit http://www.jpouch.org that was our life life through the surgery process. And as I’m sure you’ve noticed we’ve really gained a lot of healing by sharing our story with photos and journaling. Even if not for public viewing you may want to consider documenting your journey and sharing it with friends and family, we found it helped them truly grasp the magnitude and made them more comfortable accepting the reality of Mark’s situation – a win win for all of us. But if you do document and want to go public, we’d love to link to your site, we are hoping some one can fill in the missing pieces of our blog like the prep into surgery (weeks before). And also to show the surgery journey from the female perspective.

    Keep us posted and hang in there!
    Megan

  10. Brenda said

    Hi Megan and Mark,

    I am a 33 year old female and have been suffering from UC since i was 26 — well that was the official diagnosis. I can remember having problems as early as about 19 years old, in college.

    I really appreciate your blog as I will be going in for surgery next month (Aug. 14). I am really scared about the surgery in some aspects. I’m afraid of having the stoma. I’m also having the 2 step lapro. procedure and have been told I will have a bag for 3 months.

    I have been looking for as much information as I can find about this surgery. Its a big step – to commit to … though it can’t possibly be worse than life with UC (accidents are the worst!)

    So thank you for posting this blog. I am thinking about creating a blog to journal my experiences, as well.

    Wish me luck!
    Brenda

  11. mark said

    Hi Brenda,

    You’ve been sick along time, it’s time for you to get back your health and feel good again. You’ll hear it from me, and Carter said it also that almost immediately after surgery you won’t feel UC anymore – you will feel surgery, but not UC and that feeling is incredible! If possible, do try to warm up to the stoma as much as possible before your surgery, look at these photos, show them to family/friends and do whatever you can to normalize it as much before you have it. The only good thing is that you’ll quickly realize that though the stoma is, well, the stoma is strange, you will realize quickly tha the stoma makes you feel better which makes you like the stoma a LOT faster :) Also for me the stoma 3 months served a great phase for me to see that if for some reason my pouch fails that living my life with a permanent ileo wouldn’t be bad at all.

    If you haven’t already you may want to visit http://www.jpouch.org, you’ll find a great support base there for getting you through the ins & outs of surgery and recovery.

    Lastly, if you do ever want to blog your journey either send us the link to connect too, or we’d be happy to share a page with you like we did Carter. We so badly want to show female experience through this — also if you do document it, maybe you could document the pre-surgery prep like the visit the week before, the physical, etc….we didn’t document that and people often want to more info abot that process. We have found sharing our journey has been one of the best healing tools we found.

    Do stay in touch and let us know how you are recovering!

    Mark

  12. Brenda said

    Hi Mark,
    I wasn’t sure where to e-mail you. I just started my blog. Its a little over a month until my surgery. My link is below. Its still basic but I plan to include photos, etc. and I’ll do what i can to document my pre-surgery experiences.

    Hopefully my experience can add to the big picture in some way.
    Cheers,
    Brenda

    http://livingwithoutuc.blogspot.com/

  13. ryan said

    hi, I know how much this condition can suck at times. I have had it since I was seven years old. From the start I was always very sick. i would be in and out of hospitals for days months and the longest, a year. I have done every medication that is out there but the only one that ever helped was prednisone. but as you know the side effects were to harsh for me to be kept on it for a long period of time. as the years went by i became more and more sick. i tried diets natural supplements, everything. but just last year was the worst flare up yet. i was in the hospital for about 3 months. The doctors only had one more medication in store witch was humira. if that did not work i would have to do the surgery.The humira did not work. so the doctors decided the best would be to have the surgery. i am great full that i did have my parents along my side from the very beginning they risked every thing to get me better. but we all decide it was enough. i was actually considered one of the most severe cases of uc in that hospital. i was very nervous and scared but at the same time relieved to know i would feel much better to do the surgery. the surgery was done in December 2007. it took me about 10 days to recover from the surgery. but about 3 months until i was back to my self. it is July 2008 know, i am 15 and i am feeling much better. Summer is almost over and i will be going back to school. the only thing i am worried about is how all of my friends will react to the stoma. What do you think……. .. .

    • Paola said

      Hello everybody… Ryan, I belived I was the youngest with this problem… but my case was colon cancer at 19….. I had the bag for like 9 month, quimio and radio and I had a total of 4 operatios. I still doing colonoscopys every year. If I can help you in any form, please let me know. The same to the group.
      I would pray for all of you.
      Love and peace.

  14. Megan said

    Ryan,

    Glad to hear you are doing well from surgery, sorry that you’ve had to deal with so much at such a young age. Regarding your question about your friends and your stoma; part of the reason we started Mark’s photo blog was because we wanted to normalize his stoma and the surgery to our friends and family. We figured what better way to make it normal than to not HIDE anything about the process, hence, the photo journal and Mark and his stoma in full glory. What we found from this was that when Mark came home from the hospital our friends/family were asking if they could see the stoma in person, they had seen photos and now they wanted to see it in person. I wish I had photos of it but during his “no colon welcome home party” he had 3 people bending down watching his stoma work – We took a “weird” situation and made it into something curious and positive – a friend even named the stoma “Stumpy”.

    I would recommend you consider a few things: 1) a Photo/story blog of your reality, share it with friends and family, education is the only to help them accept your health situation and 2) If you don’t want to share your own photo story, share Mark’s and Carter’s with your friends so that they know it happens to other young healthy people just like you. 3) Consider throwing a “No Colon” like party, instead of hiding your situation, it is time to celebrate your freedom away from UC – a party is well in order! We even had a no colon cake :)

    Mark and I would be happy to share your story with photos on our blog, just like Carter’s if you’d like to do something like that, just let us know!

    Congrats to your new health!
    Megan

  15. mark said

    Ryan,

    will you get a jpouch at some point or are you a perm ileo?

    Mark

  16. Robin said

    Mark and Megan,
    Your courage and willingness to share your story and photos is remarkable. I truly appreciate it.
    I am a 41 yr old woman with indeterminate crohns or colitis — no one is sure. I was diagnosed 15 yrs ago. After lots of flares and meds and a handful of hospitalizations, plus two babies, I just found out that I have high grade dysplasia and will need surgery within a month. I am left with the choice of a jpouch of permanent illeostomy. The doctors seem to lean toward the jpouch. I fear the complications (and if I have crohns, it will be a 50% chance of reoccurance), so I am leaning towards the illeo. The “peeled cherry tomato” is the scariest thing to me. If it just looked skin-like, it would be easier to digest (no pun intended). Lots more research to do, but reading your story has been very helpful. I will also visit the related links you reference to learn more. Thanks again.
    Robin

  17. mark said

    Hi Robin,

    I am glad they caught your dysplasia now and are getting that colon out so quickly. The diagnosis you’ve got is tricky, did you read and/or listen to the webcast on avoiding the wrong diagnosis? See the link below, I too as many others have had the iffy diagnosis of indeterminate UC/CD —

    http://ucstory.wordpress.com/2008/07/26/avoid-wrong-diagnosis/

    My diagnosis was turned back to UC b/c after the blood test that showed blood markers for CD, they then sent me in for a test on my small bowel, and found that I had no signs on ileum or higher, and in the past all my symptoms had always been exclusively UC.

    I do know that many people on the jpouch.org site like Lizz & Michelidefina have been after the fact diagnosed iwth CD and hade trouble wiht their pouch. You should post your story with some questions on http://www.jpouch.org under “General Discussion” and see if people with your similiar situation can shed some more light on the issue for you. You will find some good support there for your situation, since yours is potentially more complex.

    Do check back in and let us know how your surgery and recovery go. Also, let us know if you decide on a perm ileo or a jpouch.

    Take care,
    Mark

  18. Brenda said

    Hi Mark,
    I was just re-reading your documentation of surgery 1. Could you guys e-mail me the cell-phone video of the stoma in action? I’m feeling a little squeemish to view it but I feel that the more comfortable I am with everything before I go into surgery the better I will handle it mentally.

    Thank you so much! I don’t know what I would have done without your blog!

    Brenda

  19. Megan said

    Brenda,

    Yes, your date is growing closer! I swear in life waiting is the hardest part, but you’ll be so pleased to be in recovery and moving on with your life. Okay, I just sent you and email 30 second video of the stoma in action, if for some reason you don’t get the email, let me know and I’ll resend.

    Hang in there and be sure to remember you will no longer be sick once the surgery is finished and that will be incredible :)

  20. Casey said

    Hey Mark and Megan,

    You’re website is the most helpful webiste out there for those of us about to experience this surgery. My colectomy is scheduled for 28 August 08 at the Mayo Clinic in Scottsdale, AZ. I’ve tried prednisone, asacol, Rowasa, steroid enemas, entocort, and Rowasa. I’m really scared about the surgery. I have been talking to two people who have had the j pounch done, and they both say they’re happpy with it, but all I read on CCFA.org and jpouch.org is negative responses. What do you think?
    Casey

  21. Megan said

    Hi Casey,

    Sounds like you’ve had a long journey to getting your health back. It is natural to be scared for your surgery, especially when you go the sites like jpouch.org where it does seem negative somewaht. What you should consider is that when people visit support boards like jpouch.org they are inneed of information and usually b/c they are having some type of problem. People tend to move on with their life when they get their health back and not visit jpouch.org which makes sense if you are healthy – why hang out with others talking about their problems? Recently someone on jpouch.org asked for good stories and 24 posts later there are many happy people our there:

    http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/4861023392

    I think it is important to be aware of the possible complication, but I think it is good to consider all the good that come of this surgery for you. Mark and Carter are both living healthy and well these days. You may want to read the Best Case Scenario post and comments http://ucstory.wordpress.com/2008/07/18/best-case-scenario-2/ One of the big reasons for our blog is to show that htere are good results out there, we saw all the negative only before the surgery and wanted to provide a positive resource. Of course these surgeries and recovery are not easy, but there is a good outcome for many people.

    Also, you may want to follow Brenda’s journey into surgery on Aug 14 http://livingwithoutuc.blogspot.com/ she is scared but also like Stephanie, she is really ready to feel healthy again. Before surgery is a scary time for sure, but it is also an exciting time in that you have your whole future ahead of you with a good chance of feeling healthy.

  22. Johnnie said

    Hey Mark,
    Im 17 and im probably going to be getting the surgery sometime in September i was wondering did you feel any pain internally. Specifically where it attaches at the bottom. I will probably have more questions later. Thanks for the site its really helpful.

  23. Jaclyn Suri said

    Hi There!

    I wanted to thank you guys for sharing your journey. I am having ileosomy surgery on the 11th of this month. I am truly terrified. I am so scared that I won’t be able to handle the emotional part of it. I have had Crohn’s disease for 15 years. Though J pouch surgery is not usually an option for Crohnies they may still be able to do it on me because of the location of my illness. That is what I am praying for in the end. They wont know until after they open me up. I am so tired and sick all the time. I am looking forward to some change. Hopefully this will be for the best. How are you doing now? Have you had any problems since your take down? Anymore blockages? I hope you are well.
    Jackie

  24. Michael said

    Thank you for sharing this. I have been diagnosed with colon cancer and my J pouch surgery is scheduled in two weeks. I hope your husband is doing well.

    Michael

  25. roxy b said

    my 21 year old boy frend has got 1 he shud b getin his reconsructed in 2years after he finished uni
    xxxx

  26. ben said

    great story!! change a few minor details, and its me!! just last week. its been 8 days since ileostomy extravaganza 08. the getting up and walking thing is huuuuge. it took me a minute to dissassociate the bag from my body. i was being very tender with it and thought for some reason it could hurt if i do something to it. now, its just a plastic bag. no biggie.
    i do see what you mean by getting over the stoma in public. ive bumped it already and thats not good. what can you do though. just be a safe as you can. ive heard of peoples sticking out 5-6 inches after hitting it or lunging a certain way. well, just wanted you to know someone else out there is going through the same thing!! hope all is well. ben

  27. Catarina said

    Hello Mark! my name’s catarina, i’m 24 years old and i suffer from UC since december 2006.. my story is similar to yours, all pains and loss of weight, etc.. i have my first take down scheduled to monday.. i’m very nervous and anxious.. oh my god! is it really the best choice Mark? the doubts are appearing..
    thanks for your blog! it’s very helpful! kisses – catarina

  28. Catarina said

    sorry.. i forgot to tell that i’m from Portugal.. here these kind of surgery are not so frequent as in USA.. and we don’t have many opinions and testimonies about it..
    thanks again

  29. mark said

    Hi Catarina,

    Wow, your surgery is so soon. I think making the decision to have the surgery is way harder than the actual process of surgery. Of course being anxious, nervous is normal, but also try to find some peace that you are entering a phase of new health, and that you’ll no longer be sick!

    If you ever want to share your story on our blog here, just write me and let me know. We’d love to have an international perspective (email: mdhilton@gmail.com)

    Good luck and keep us posted,
    mark

  30. Wendy said

    Thank you so much for posting this. MY 16 year old daughter will be having a 3 part surgery for UC next week. She is too sick for them to take everything in one operation, so they are doing 2 to take out the colon and then the reconnection (Jpouch) I can’t tell you how much reading this helped us both know what to expect!
    Wendy

  31. Megan said

    Hi Wendy,

    Sorry to hear about all your daughters struggle. Having the surgery should get her back to life of a normal teenager. On this site both Steph and Carter had their surgeries at 21 years old. And on the http://www.jpouch.org there are other young people if she wants to touch base with people her age. Also, be sure to use jpouch.org as a great source of info for support and learning about anything that comes up.

    Take care,
    megan

  32. louise said

    hi mark,

    thank you so much for your step by step story about your illiostomy and stoma. i am a nursing student and we learnt how to care for stomas in our class today, and your story has really helped me see it in a real-life situation!

    thank you again

    – louise in australia :D

  33. Vanessa said

    Hello!
    I am also a nursing student and just learned about stomas today!
    I really cheerish your your story posted online, and am so happy for you, for having a supportive mother and partner, Megan.

    Thank you for the posting!

    Vanessa (Canada)

  34. Megan said

    Hi Vanessa & Louise,

    We are so glad that we are able to provide the info for you as nursing students. I know I’ve said this before on this blog, but NURSES ARE THE RECOVERY! Mark’s nurses were so incredible and especially during the first surgery where they taught him to change the apppliance, etc..

    Such an incredible career, so emotionally and physically challenging and yet helping people heal is worth it, I would think!

    With much respect to all nurses,
    Megan

  35. Deb said

    Thank you Mark and Megan for being so kind as to share your experience. I can’t imagine how many people you have helped educate, calm and help.

    I am lined up for my step #1 surgery on November 11. I have a totally insignificant question, but neither my husband nor I can come up with an easy solution.

    With all the IV’s hooked up (I am not quite sure what exactly all will be hooked up and how) what type of robe did Mark get to do his hall walking? Did he just run the IV lines up the arm of the robe and out the top? Or would you suggest maybe modifying a robe on our own to get it on and off more easily for short, frequent walks? I know, probably this is the first time you’ve been asked THIS one!

    Thanks again,
    Deb

  36. mark said

    Deb,

    That is an AWESOME question…out of all the things I’ve been asked, you are right this is the first time asked about the robe, but it is a really good question. I don’t think you’ll need to modifiy anything, I just wore a thinner robe of a cotton or flannel material(not terry cloth or big texture for ease of use), and I only put one arm in the arm hole. The arm with the iv’s (you should have only 1 arm with IVs – atleast I only had one arm with IVs for my surgery) was the one that I kep out of the arm, so if you look at Pic 9 in this series you can see that my left arm that is hidden under the robe is the one that has the IVs in it (look closely at the photo you can see the two iv tubes up to the left arm hidden under the robe).

    Plus, you’ll have your catherdar and iv’s around day 4 or 5 so you’ll only have a few days of having half robe. and to be honest you’ll be doing laps in the hosptial and you’ll quickly get to know the other patients walking on your floor (plus, at 3am you may see more butt than you want on one of your neighborbors when they don’t get the robe on right over their IVs..hahaha..)

    Do let us know how your recovery goes, and you and husband can holler at any point. And oh yeah, if you need any basic info there is also the great support board, http://www.jpouch.org.

    Heal well and get back to life,
    Megan

  37. Jan said

    Hi Mark,

    I also want to thank you for sharing your experience.
    I’m from Germany, 25 years old and i have been suffering from UC since 20 years.
    During the UC I had not so much problems with it, but now my intestinal cells are transformed so that I could become cancer in the future.
    This is the reason why I’ll have my first surgery on November 12.
    With your step by step story it’s much easier to understand what will happen to me.

    Thanks again
    Jan

  38. mark said

    Hi Jan,

    Oh, wow..that is a long time living with UC! That is hard to know your colon cells are changing, but it is good that your doctors caught the changes before colon cancer could form – that is excellent news!

    There are lots of great support groups out there, and since your in Germany, you may find the jpouch group out of the U.K. useful, http://www.iasupport.org/

    I use http://www.jpouch.org which is excellent, but tends to lean more towards an Northern American group of jpouchers.

    Keep us posted and heal well – be sure to stay postive to help speed up your recovery!

    Mark

  39. Thomas said

    Hi Mark,
    Just wanted to say that you guys have a great web site here and wanted to tell my story. I’m a 35 year old gentleman from Houston, Texas. I was first diagnosed with UC when I was 14 years old (20 years) I know that might seem long, but in the past 10 years I had been taking care of the UC natually. Change of diet and lifestyle played an important role for me. I basically side stepped the pharmacudical part of the disease. It was great…up until last August. I started to bleed. I thought I was doing good with my diet, but had to look at it carefully again. I basically slipped, and with UC you can’t slip you’ll end up falling all the way. Which I did.

    After getting a colonscopy back on September 25th of this year I find out 5 days later on October 1st that I have Stage II Colon Cancer. One tumor in the Sigmond Colon and one in the Rectum.

    They want to do a Total Colectomy, which mean I would have the Stoma. They would then perform radiation on the Rectal Tumor. I would then come back for the “take down” surgery after the tumor has decreased in size.

    My surgery for Total Colectomy is on December. 1st. In the meantime the doctor’s have me on Prednizone (The Evil Drug) since Nov.6th (I’m tappering down the dose now), Asacol and a Hydrocordizone Enema.

    After seeing your pictures I have put most of my surgery fears to rest (I’m not going kid you I won’t enjoy the post-operative pain though) and I can realize that I feel better after the tumor is out of me and I can continue living my life. I’m in good spirit’s.

    I just want to be off of the damn Prednizone, lol, the tappering sucks, but it’s needed. Hell, that’s the effect it has when your writing an e-mail at 2:11am in the morning, lol.

    Thomas

  40. mark said

    Hey Thomas,

    That is great that you were able to abate symptoms by using natural methods. I tried natural for me, but mine was too far gone quickly that I had little luck. We actually posted a link for others to access about the use of alternative meds and stuff for UC….http://ucstory.wordpress.com/2008/06/25/alternative-medicine-for-uc/

    Oh yes, the prednisone dance, Megan used to say I was like a fish out of water flooping around in the middle of night in bed b/c of the pred. The good news is that after your surgeries and all you’ll not need “The EVIL DRUG” any longer.

    I’m glad to hear the photos help soothe some of your surgery fear, you’ll be suprised probably by the lack of pain, I was thinking it was going to have a lot more pain involved but it wasn’t what I thought –

    Good luck with the recovery, let us know when that tumor is gone and you’ve kicked that cancers butt…
    Mark

  41. Amy said

    Thank you for your information. My 10 year old son is facing a 3 part surgery tomorrow. We are both very afraid this was very helpful to let me know what to expect.
    Thanks,
    Amy in Alabama

  42. Thomas said

    Mark,
    Just wanted to give you a surgery update. As of today I will be going for open surgery on Dec 8th only because this is Colon Cancer. I feel the doctor needs to “see things” when operating. If it were anything else besides Colon Cancer I would have it done Laproscopicly.

    Interestingly enough, when talking to the Laproscopic Surgeon he said he wouldn’t need to make a bikini line incision after all. He said he would drag my Colon out through my anus. Have you heard of this before? Cuz I haven’t.

  43. Parker's Mom said

    Thank you so very much for all of the info and especially the pictures. They were of great help as my husband and I were looking at our 22 month old son’s stoma and trying to figure out if everyone’s looked the same way. Regardless of age, the are remarkably similar!

  44. Megan said

    Hi Parker’s Mom,

    What a journey your family has been on – I can only imagine. Now that your son is living with his stoma is his health improved? Will he be getting a jpouch or have a perm ostomy?

    Megan

  45. I am scheduled to have my rectum removed and will be wearing a
    bag for the rest of my life. Any other info or tricks you used
    will be helpful – I’m a male age 63 and am absolutely terrified of the ‘bag’ as I’m extremely sensitive to smells. Any ideas or help will be greatly appreciated ! Thanks !

  46. mark said

    Hi Marty,

    The idea of the bag is I think shocking to most people right at the beginning, but the main thing I can say is that you can’t fight it. You have to accept it and realize it is helping you be healthy. For me I forgot pretty quickly that the bag was there and just got on with my life being healthy. As for smell, my bag never smelled other than if I had gas in my bag and I went into the bathroom to empty the bag. I don’t think you’ll need to worry about smell, plus some people that are worried about smell put some type of grandules in the bag to absorb smell. You should look into the forum board at United Ostomy Association here http://www.uoaa.org/ Also, Shaz has a great ostomy support forum at http://www.ostomates.org/

    Stay well,
    Mark

  47. Katie said

    Hi My name is katie i’m twenty and I just had a whole Colectomy and a ilosyomy bag for three month its on a j loop I didnt get my surgery done by laser.I was also on prednisone, and humira also it was good to see someone else to share a similar story i was the youngest patient on the floor also lol! PlZ keep in touch!

  48. nat said

    thankyou for making me feel a little more at ease with my own situation.
    As embarassing as it is for a teenage girl, I have to admit that there is a sense of “battle scars” which doesnt seem to be a large problem with him at the moment. Although I have had necrotilzing enterocolitis since I was born and as a result suffered a considerable amount of time attached with a colostomy bag, this makes me feel like I’m not the only one, or that I don’t feel as abnormal or different.
    I have had 5 major operations to fix it (this along with other issues) so it is really comforting to know that someone understands and will not be judging or treat you differently ie. bullying… just because of the hard times, the constant hospital care and check-ups.

    Again, thankyou for this detailed guide, allowing me to understand visually what the procedure entails since this was all done at a ver yearly age and I do not remember everything although the physical scars remain.

  49. Keisha said

    Thank you so much for sharing your experience with everyone. I was just recently diagnosed with UC, but think I’ve had it for at least a year. It’s nice to know we’re not alone, but it’s sad others have to go through it. Hope all is well now! Thanks again for sharing and take care!

  50. Katie said

    Thank you. I am a horseback riding instructor and an 18 year old student of mine (who I’ve taught for 11 years) has just had this surgery. She was diagnosed with a rare disease called Gardeners Syndrome that has a 100% rate for colon cancer unless the colon is removed. They tried a J Pouch but had complications and ended up giving her a bag. She hopes to be able to ride again once healthy….. any thoughts?
    Katie

  51. Sharon said

    I am scheduled to have the first of my two-part surgeries on May 24th. About a week from now. I was/am? terrified, but less so and I want to thank you from the bottom of my heart. I was diagnosed with U/C two years ago and it’s gotten worse and worse to the point of controlling my daily life with pain, bleeding, frequency, and worry about all of the above. At the beginning I said, I’ll never have that surgery, that won’t be me. But it is, and I’m trying to accept it. Your site has helped immensely. I’m on Asacol, Prednisone, Remicaid infusions, Azathioprine, and in the beginning tried other drugs as well. I’m crying uncle! I really needed to see what the stoma looked like, and get the very real details you so gratiously shared. I look forward to sharing your site with my children and loved ones so they know what to expect. I think, too, that you’ve inspired me to journal and photo journal my experience as well. Thank you so much!

  52. Ana said

    Ur story in really interesting and am happy I found this to read a little on someone else experience..my mother has had this condition for 15years..and now it’s gotten to the point were she needs the surgery..finacilly it isn’t the cheapest thing.my question is how much this cost you??if u didn’t happen to have insurace which is my mothers case..do u know any organization I can get a hold off or anything that can help us pay for this???hope I can be as brave as u were…thank u again for this story…..

  53. Katie said

    Hi! Im katie (: i am 18 and i went throug this entire thing!! i had the worst case they had seen. and i was wondering if you (mark) could talk to me about a few things?

  54. Melinda said

    Thank you so much for this article! I work in an assisted living residence, and I help some of the residents with everyday tasks, and i have noticed one man with a ‘thing on his belly’. Out of politeness I never asked, but curiosity got the better of me! Now I can know what to expect if he ever needs help! Brave, brave man!

  55. Regina said

    Hi! My brother was recently diagnosed with severe UC as a direct result of the drug ACCUTANE. I am looking to talk to anyone who might know about this or know anyone who does. Of course I would appreciate any advice anyone has on what to do when you get this news. He is only 22. It’s not genetic. It is officially and definitely from the medication he took for acne. You are all so brave for speaking about your situations. I’d appreciate any advice or information anyone has to offer.

  56. jason hereford said

    Still have a lot of inflamation and pain about 4 inches inside of stoma. Surgery was 10 days ago. Is this normal? Very frustrating.

  57. adrian said

    Hello Mark. 12 years ago my father had this surgery. up until his final day he never allowed me to see what the end result from surgery was. for some reason today i was curious to see. i came across your page. I hope your healing process is going well and i am glad you shared with your story!its great when people can educate through self experience.

    All the best, Adrian

  58. Khaled Selim said

    You are lucky that you are not from third world country .. it would be totally different

  59. Thanks for this : )

  60. Chris said

    Thank you so much for sharing your story. My wife goes in for her J-pouch tomorrow morning (Thanksgiving Day). She’s had UC for 10 years, and we’ve known the day would come when she’d need the surgery, but her UC went absolutely crazy this week to the point of hospitalization. After a colonoscopy, they said “it’s time.” We’re actually very excited because this will give her a new lease on life! Thanks again for the detailed story; it was very helpful for me, her husband, to know 1) what to expect and 2) how to better support her through the long-haul.

    • John Marr. said

      I had an s pouch for UC in 1981/82.
      Its like a J pouch but uses 3 loops of small bowel where a J pouch only uses 2.
      Ihave had very few problems since then.
      Please feel free to email mail me with any questions about having a pouch for so long.
      Best Regards from Australia.
      jj marr.

  61. Heather said

    Thank you so much for sharing this. I am a grad student at UW in the nutritional sciences department. This has been so informative – including the pictures.

    Good luck in your recovery. However far along you may be now.

  62. Marj said

    Mark and family –
    Thank you so much for sharing this experience. I went on this site because my freind of over twenty years just had this surgery done due to widespread colon cancer. While I knew of ostomies from a conceptual standpoint, I had absolutely no idea about the everyday issues and experiences. Thank you so much. I now feel much more prepared to speak with her and assist her.
    Continued blessings and good health, Mark!

  63. Mark said

    Thank you Mark, and all who have posted your experiences here. I am 46 years old and have been living with UC since I was 17. I lived through some really bad years with UC till I was in my 30’s and went into a semi remission. I have flareups periodically but not bad ones. My issue is during my last colonoscopy My DR found low level Dysplasia in a few of my byopsies. Now with my long history of UC I am looking at the choice of an elective removal of the colon due to the very high risk of a quick onset of colon cancer. I remember back when I was SOOOO sick I at times wanted my colon removed, Now faced with deciding on having it removed when I feel fine is going to be difficult. I almost think I would want to live with the bag, because going back to the frequency of 8 times a day would seem almost like as setback. This is going to be a very hard decision (one I new would someday come, just not so soon) and I am glad I found this site so I can see what others do to cope.

    Has any one else here had and elective removal when they weren’t in an active UC bout?

    Thanks again for the stories, They do help!

    Mark

    Rochelle Illinois

  64. Ostomy Nurse said

    Mark,

    I am a Wound, Ostomy, Continence Nurse at a large teaching hospital in the Midwest. I found your blog while looking for some information while preparing a hospital-wide ostomy education presentation that we are providing to all of the staff nurses at our institution. I was very impressed with the documentation of your experience with your ileostomy. I would like to include your blog information in a case study illustrating the patient’s perspective of what it is like to experience an ostomy. I think it would help them to understand how important their impact is on making the patient’s time in the hospital as positive and possible. I am hoping you will allow me to use some of the images that you posted as well as quoting the text as needed. Plese let me know if you have any questions. Again, thank you for sharing your story with all the other ostomates and potential ostomates out there.

  65. Dale Appleton said

    Mark & Megan. I’m 58 years old and had my total colectomy W/J-Pouch in Dec of ’89. Your story and photos brought back so many memories, good and bad. Having the family support is so very important. From March of ’89 till Aug of ’02 I had my quality of life back to what it was like prior to UC. In Dec of ’09 I was diagnosed with Crohn’s Disease so am dealing with that issue now. Again the spousal support is getting me through it.

  66. Aishling Reid said

    Mark & Megan,

    I’m a 17 year old girl from Dublin, Ireland & I was diagnosed with Crohn’s Disease just after my 16th birthday last May. I can’t even begin to describe how it has changed my life, but its something I’m just going to have to learn to live with I suppose. But having said that the last year has been extremly difficult & now my doctors are saying getting a bag fitted may be a necessity. This is something I’m really dreading if I do end up having to get it put in, I honestly don’t know if I could cope with it especially at my age. Is yours permanent? Can you stay as active as you were before? (though bearing in mind I can’t do much anyway from sheer exhaustion). But can you work normally and carry on like normal? Have you had any bad reactions from strangers? Your story has really helped me so I very much appreciate it!

    Love from Dublin!

  67. Thank you for this blog. I’m going to be having the surgery in September for the UC I’ve been suffering with since 2004. It’s pretty terrifying but after hearing the amount of positive results, including Mark’s, I’ve reached the decision to have the surgery. It really helps to know what I have to prepare for. Again, I cannot thank you enough and I’m glad Mark is doing so well.

  68. bobby said

    umm…he is really hot

  69. Joseph Frenkel said

    Dude!

    I’ve just been through all of this (10 years worth of it.) Ulcerative colitis -> failed meds -> J-pouch -> death of J-pouch, and just last summer, J-pouch resection.

    Thanks for your story. Please shoot me a line; I want to talk. Just leave an email address in a follow-up comment. Or I’ll leave you mine.

    Best of best wishes,
    Joseph

  70. Carissa said

    I came across your story while doing a google search to try and find info on surgery. My husband has ulcerative colitis and it has been a nightmare. We have finally decided to go ahead with surgery fire nothing else had worked and we are ready you’re the misery to be over and for him to start living again. We have a one year old little hotel and he had been sick for more than half of her life. Your story had been inspiring to me and I would love to ask questions and maybe get done advice if you wouldn’t mind emailing with me?

  71. paulina said

    Im glad to hear everything went good i just went tru the first surgery last week and got my colon removed n have the ileostomy bag i feel embarrassed of it so im isolating myself from everything i just feel like being alone so nobodu will know whay im going tru even when i found out i had uc i didnt want anyonyone to know i feel embarrased only my close family members know whats going on this is something very hard to go tru

  72. faith said

    Uc is the so unexpected

  73. bingo said

    Nice post. I used to be checking constantly this weblog and I’m inspired! Extremely helpful info specifically the last section :) I care for such info much. I used to be looking for this certain information for a very lengthy time. Thanks and best of luck.

  74. noelle said

    This was so helpful thanks for letting people into your life!

  75. Gianna said

    Hey thank you so much for posting this in so much detail. I am a 17 year old and my doctors just told me today there is no other option but to do this.. Needless to say I was freaking out.. I mean come on.. A 17 year old girl having to have a poop bag.. Not the best news. But this helped me realize that it will not be so bad and I can do it.

    Thank you again for posting this and in so much detail!

  76. Magmaar said

    Its such as you learn my thoughts! You seem to grasp so much about this, such as you wrote the e-book in it or something. I think that you could do with a few p.c. to drive the message house a bit, but instead of that, that is wonderful blog. A fantastic read. I will certainly be back.

  77. Normally I don’t read article on blogs, but I wish to say that this write-up very forced me to try and do it! Your writing taste has been surprised me. Thank you, very great article.

  78. I am not certain where you’re getting your info, however great topic. I must spend some time learning more or understanding more. Thanks for fantastic information I used to be on the lookout for this information for my mission.

  79. Ricko said

    and it looks more painful photos here. may we always be health.

  80. Terri Bailey said

    I had UC for 15 years. My colon became toxic, and they told me on my 40th Birthday that it had to be removed. I had a wonderful Doctor, Janice Rafferty in Cincinnati do my J-Pouch Surgery. The first year was hell….but looking back, I would do it again. I wish I would have had the resources and blogs back then. I am 50 now. Dehydration is still the biggest battle. I even get cavaties from not having enough saliva. (something I would have never thought of)
    Good luck and God Bless you all.
    Terri

  81. […] There are blogs for everything. […]

  82. Ben said

    Inspirational website! I had a surprise diagnosis of UC in Jan 2013, no history previously. Ended up having colectomy here in London, ileostomy and now waiting for my loop ileostomy and j- pouch at the end of the year. I had first serious blockage last week, 4 hours of incredible pain, vomiting and wondering if I was dying! Stoma nurse was great. Went through same emotions as you & your son by the sound of it. It’s good to see photos of other people looking fit post surgery. Very best of luck for the future.

  83. Angie said

    Hi there Mark. I’m so pleased to hear that you’re making great progress! I am in the process of trawling the Internet as we speak desperately trying to find some information to throw at the surgeons and doctors who are meant to be treating my son after a total colectomy on October 2nd. Like you he is 32, has had UC for 11 years and he finally reached the point where surgery as the only answer. Also like you he is into fitness and healthy lifestyle and when he is well he looks great but no one sees the skinny drained young man We see when he’s having a flare up.It took a lot of guts for him to go for elective surgery and he has had stage 1 and meant to having a j pouch in about 6 months. However it’s all gone horribly wrong and he has had to be re-admitted twice now. His bag started filling with water and severe abdominal pain and they went back in keyhole but found no tears or leaks.back home after 4 days and eating small and often but still nauseous and pain until on second day home pain increased to such a level that he had to be taken in by ambulance and spent hours in surgical emergency trying to find out what was going on. Still saying no obstruction after 2 cat scans ,X-ray’s ,enzyme drink scan. Surgeons still saying there’s no mechanical reason they can find but he can’t eat much without feeling incredibly sick and now is throwing up green bile . He is is agony, depressed and weak. We don’t know what to do. Anyone had any of these problems? This was meant to improve his quality of life but he’s so low and despondent he’s wishing he never had it done which is just awful.Any advice anyone? Does this sound like ileus? I feel so helpless and he’s too weak to fight for himself. His girlfriend and I are going to demand some answers tomorrow as we feel they are not taking this seriouslyAny one else experienced this?

  84. Erin said

    Mark-

    I am in houston as well. I am scheduled to have j pouch procedure next month. I’m interested in what surgeon you used as I’m considering getting a second opinion. Thank you, Erin

  85. Emma Scmanski said

    J-Pouch Surgey saves people’s lives, but it is NOT a cure. Don’t EVER let misinformed doctors or surgeons tell you that. See for yourself on PubMed.

    http://www.ncbi.nlm.nih.gov/pubmed/22876035

    Patients are left still diseased, but not as sick as they were.

    I’m sorry for all you have been through. Some people really neeed this as a life saving procedure. But, it is likely it was pushed on some as well and “sold” to them unscrupulously as a cure. It saves lives and manages the disease as best we can.

  86. Steven bourgeois said

    What a great story thanks so much for the step by step process. It really helped me calm my nerves reading this. I have to go for a restorative proctocolectomy and am really scared about it but reading your story helped a lot. So thank you so much

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