UC to J-Pouch Story

Photos 3: Jpouch

J-pouch “Takedown” Surgery or Mark’s Step 2 surgery

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)

 

*Time between surgery 1 “total colectomy”and surgery  J-pouch “Takedown” Surgery 2 “takedown” was 3 months.  Mark could have had the surgery done at 8 weeks but needed an extra 4 weeks to fit his work schedule.

**I tell my story 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. 

Photo 1: X-ray prep and night before takedown

Five days before the scheduled takedownsurgery, he went to have a barium x-ray done of his pouch to make sure there were no leakages.   This process was easy, but make sure you STRESS to the x-ray technicians that you have NO COLON and that they must use smaller tubes than they would withothers.  Please be very clear about this, that they can not use standard tubes, it isn’t as common for them to do this procedure on people with no colon, so don’t assume they understand.   You may have some barium fluid coming out your stoma, and you might be prepared for some barium fluid leakage from your anus on the car ride home.

This is Mark in the hotel the night before the ‘takedown’ surgery. Yesterday Mark started another stoma blockage, this was a full blockage that last 24 hours (Sat into Sunday).  After having 3 blockages, he began to think it was maybe scar tissue and not just food like we had initially thought.  This blockage left him vomitting and in pain, but luckily he was still able to have the takedown surgery on Monday morning. 

 

Photo 2: Prep for takedown & Supplies Brought

 It was really nice that everything was familiar for this surgery. Meaning the rooms were the same, and we dealt overall with the same people.  It made it much easier going into this surgery knowing the procedure basically.

What to bring for your takedown:
1.  Super soft toilet paper.  For a 4 day stay Mark used 1.5 roles.

2.  A variety of your preferred creams for skin and/or hemorrhoid (skin tags) treatment.  Mark’s favorite cream is Cortizone, Nupercanal and Tucks cream.  Other people have mentioned they prefer A & D, Calmoseptine.    Just find what creams works best for you.

3.  Mark had a spray bottle but didn’t use it b/c his movements went from liquid on day 2 to mashed potato like once he began eating solid foods.

4.  Other people have mentioned bringing their preferred garments for leakage.  Mark didn’t have any leakage, but you might want to bring some. 

There are many great posts about what to bring or how to prepare for takedown on jpouch.org, here are some good links:  takedown supplies and happy takedown prep .

Photo 3:  Goodbye Stoma

Here we said goodbye to the stoma. He was a good stoma, that did his job really well and was good to Mark.  If for some reason Mark would need to go back to temp or end ileostomy we know now that it would be okay.

We saw having this temp stoma inbetween surgeries as a blessing. If this is ‘worst case scenario’ if the jpouch doesn’t work, then we don’t have anything worry about.  Life with stoma is a MILLION times better than life with UC.

Photo 4: Takedown day 2, Bandage

 

Here you can see he is standing in the morning of day 2.  He just had the foley cathedar removed (only had the cathedar for 15 hours).  He was able to urinate on his own fairly quickly and since this procedure isn’t consider to have trauma near the bladder like the first step, he didn’t need to keep the catheder in long. They put it in for surgery and then the night of surgery to make sure he was urinating enough.

Most exciting, was that 15 hours after surgery, he felt some pressure on his anus and he had his first bowel movement.   We listened to the others on the jpouch site and brought him soft soft toliet paper, wipes, and spray bottle, and multiple types of butt care creams (Calmoseptine, A & D). 

Since his first BM, he has gone 3 times in 8 hours. He has continence control. 

Just this morning was he allowed to start sipping water, no food yet.  The doctors want to make sure his bowels are fully awake before they start putting food into him.  He is very hungry right now, and he just saw a commercial for pizza and he said, “yumm, pizza”….He is feeling pretty darn good.

Yes, he is swollen in both the pictures here on Day 2 his “surgery” alergy came back. He had some reaction apparently during the 1st in the operating room.  Then on the 2nd surgery we thought we knew what he was allergic to, but obviously not.  He was all swollen and itchy, and his hand that had the IV was really swollen.  He was on benedryl which helped him sleep in the hospital.

Photo 5: Takedownday 2, bath

 

 Just to give you a frame of reference here he is about 24 hours after surgery, and he is up and has the engeryto take a sink bath.  I’m sure you are sensing that the physical recovery of this surgery is a lot less than step 1.

Photo 6: Takedown day 2, Walking

Walk, walk, walk and get those fluids moving.

Photo 7: Up-Close staple suture Day 3

Here is the stoma suture on day 3.  His stoma site was stapled closed with three staples.  The closure of the stoma site is about an inch and half long. 

He doesn’t appear to have any infection in the area.  The surgeon said that nearly 50% of the stapled sutures need to be opened up because of infection.  The infection is common since this was an area exposed to stool.  They said they do their best to clean the area in surgery but that waste is sometimes left behind.

The surgeon took off the bandage this morning, and it was totally clean, there was no oozing or anything.  The surgeon did not cover the wound back with gauze, so now Mark has no bandage.

In this photo you can see all 5 incisions from the lapro surgery from step 1 (done 3 months prior to ‘takedown’ surgery)

1.  The north incision is doing well a little red but no pain.

2.  The middle incision right in/above his belly button is almost gone. 

3.  The east incision (east in photo) where the JP drain was during step 1 surgery recovery is a divit but healing well.

4.  The south incision looks good, it is smooth to the touch, but still has some purple/redness.  No real pain, but his underwear band does irritate it at time.

5.  The west site where the stoma was that is now sutured with staples.  This was the only site on his belly that the doctors worked on during the ‘takedown’ procedure.

*STAPLES REMOVED ON DAY 4 WHEN RELEASED FROM HOSPITAL.  Staple removal did NOT hurt, and was done right there in his room totally casual and easy. 

 

 Photo 8: Staple Suture

Just a far away shot for you to see how it looks.  On day 3 he is sitting up and feeling good. 

 Photo 9:  Day 3 first time with clear fluids

Day 3 and he is having his first all clear fluid meal.  Surgeons are being very cautious about giving him food.  His bowels woke up on day 2, and he is having BM’s every few hours.  No pain, no butt burn, but he hasn’t eaten anything yet either so we will update as his movements change. 

On the night 3 into day 4, he was on clear liquids and he went to the bathroom 3 times during the night.  His hinny skin is starting to feel a bit raw so he is tapping into the calmoseptine.  He will start soft foods today, so we’ll see if ‘butt burn’ occurs or not.   Cross fingers for no butt burn 🙂

Photo 10:  Day 4 Staples removed and glued shut

On Day 4 before leaving the hospital the staples were removed by the resident surgeon.  All he has now is the strips of tape covering the wound that are glued on the top and the bottom.  Mark will have this stuck on there for a few weeks (2.5 weeks).  He can shower and everything, no baths though that come over the old stoma site.  He can take baths to soothe his behind but not the wound.

Update on this:  Those strips of tape the resident surgeon put on only last 1 day and then they were coming off, so Mark made his own tape coverage for a few days, then he just went bare after about 3 days. 

Photo 11: Going Home Day 4

On Day 3 he started solid foods.  And so far, so good.  When he was eating full liquids he was having fairly thick movements.   On day 3 he had 6 BM’s, and 2 night BM’s.  He wants me to mention that he thinks he would have had less than 6 BM’s had he been able to fully empty his bowels, but the nurses wanted him to save his urine (to prove he wasn’t dehydrated so he could be released), and having to save the urine broke up the ability to fully empty his bowels at one shot.

Today, on Day 4 (released from hospital).  He is now on a full day of solids, and his movements are not so liquidy, and farther apart in time.  Movements every 3 hours or so, and he has no urgency and can hold them till he reaches the bathroom. 

No night leaking, and moderate pain from hemorrhoid tissue..

He is thrilled to be out of the hospital and will keep ya’ll posted about movement frequency. 

Day 5 Update:  After being on solid foods 2 days, he had night frequency about 6-8 times.  Butt burn of some sort is starting, and there is some pain around the suture site (not on any pain meds now).   He is going to start playing around with his metamucial amount.

 

Photo 12:  Day 7 up-close, Fiber & Imodium

Day 7, and he is having about 6 movements during the day.  He has ranged from 2 to 4 movements the last few nights.  Various issues are not relating to butt burn that we’d heard so much about, but trouble with existing hemorrhoid skin tags.  The tags are swelling and causing severe discomfort that no over the counter cream is helping. 

There is still much to learn about his new ‘plumbing’ but it is gong as expected. The emotional transition is a lot considering the 3 months with the temporary ileostomy allowed great freedom for living away from UC. 

Mark is using a fiber supplement in the morning to help thicken up his movements.  He was given fiber in the hospital right when he started eating solid foods.  Also, around week 2 he started trying imodium to see if that would help slow the night movements.    Here was a great post where Jan explains in the 3-4th post down How imodium works explained  – understanding how the medicine works helps Mark use it better. He also uses the generic brand from Costco it is so much cheaper than imodium and comes in a bottle so you don’t have to open up those wasteful individual packages 4 times a day.

Mark is also slowly trying to hold his movements and not rush to bathroom every time he feels some pressure.  It was mentioned to Mark to try to slowly hold going to bathroom to help, but to only do this in little bits as the pouch adjusts. 

Photo 13: No Suture Day 7 Full shot- Grumpy Moods

Mark is tired and a little grumpy.  He isn’t sleeping at night due to BM frequency, and it seems the emotional of reverting backward to some familiar UC ways is challenging. 

We were prepared for this as much as coud be but the emotional aspect of seeing symptoms like UC, is hard.  It has made Mark quiet (an old habit), and it has made me (Megan) irritable and I feel like screaming at times. I know this disease is about Mark and his recovery, but it does take it toll on immediate loved ones who provide the emotional support.    I just want to preach to anyone who is dealing withdisease like this that the sick person must always treat their loved ones with respect, you can be grumpy, scared, quiet, remove affection, etc…but you must do it in a way that doesn’t punish your carers or make it harder on us than it already is, and please know we aren’t sick like you are but we do ache inside because we love someone who we watch struggle to be healthy.  Okay, I’m done preaching now. 

Nevertheless, recovery takes time, time, and time.  And we were prepared that this recovery would take time and have many ups and downs.  But it is one thing to be prepared and then it is another to experience it.

Photo 14_stoma site healing Week 3

Here is the stoma site healing up after 3 weeks since take down.  Isn’t that strange how the stoma ghost is still around the suture.  Anywho, the wound is healing well, no infection and just itches at times.

Photo 15_3 weeks past_stacking wood


Hello Winter!  We had two cords of wood sitting there waiting to be stacked that arrived prior to takedown and it sat there through surgery.  The good news is that 3 weeks after takedown Mark felt great and was stacking wood. He is going back to work on week 4 (surgeon approved him to do his type of  work after 4 weeks).   However, he has been doing office type work since early week 2. 

At the end of Week 4 after takedown, all is going really well. Mark went back to physical work this week on an interior remodel.  He was able to work full days and felt good.  He was surely tired at the end of the day and is resting this weekend.  His moods are much improved now since we are getting back to living a “normal” life.  His movements are about 2 at night and 4-6 during the day.  He is on 2 immodium in morning and glass of metamucil, 2 immodium at night before dinner and glass of metamucil.  He thinks the fiber is helping thicken him enough so he can fully evacuate.  And the immodium he thinks is helping his frequency decrease.   

No complaints, 5 weeks in jpouch life and is going well!

Photo 16_And Life Goes On.


Okay, so here is Mark after 10 Weeks Post Takedown.  As you can see he is coming to life.  It has been years since he snowboarded as his UC did not allow board sports easily (ski lift, bathroom, urgency…not a good mix).

He is actually volunteering to help a program that takes kids snowboarding who use modified board equipment due to movement paralysis of some sorts.  He is really excited about this and he can’t wait to snowboard again. 

 

 

 

 

 Photo 17_ Healing 10 wks post takedown

Here are the scars after 10 wks past takedown, and for the other 4 scars it is now 5 months!  And his scars are looking really good.

He is still taking 2 immodium in morning and cup of metamucil.  And he takes that same “cocktail” in the evening before dinner.  A few weeks ago he didn’t take the immodium or metamucial, and he was in the bathroom a lot more.  Made him realize that those are necessary for him to regulate his movements.  He is averaging about 6 times in a 24 hour period. Some days are more/less than others.  He does have some butt burn, but comes and goes, I’m sure it has to do with his food. We eat tons of tomato based sauce/foods and maybe those are the issue but he still eats them!

 

 

Update May 2008

No photos to show right now, but all is going well. About 4-8 BMs per day. 1-2 per night. He sleeps deeper than he ever has, he feels good, doesn’t stress about going out. It is like a whole new life.  We will post some new scar updates in a couple months.

You can click here to follow the most recent posts of “Living with a J pouch”  Life most definately improved after j pouch surgery and recovery 🙂  https://ucstory.wordpress.com/2008/06/02/veracruz-mexico-photos/

 

9 Month Jpouch Update:  Doing great, here is a link to some updated info and some 9 months after takedown photos:  https://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

 

 

 

 © 2008 All Rights Reserved

76 Responses to “Photos 3: Jpouch”

  1. Laurie Bradley said

    I want to acknowledge how difficult it must have been to photo/document this life changing decision. I, like Mark, had 3 terrible years of UC, constant flaring and hospitalizations, losing and gaining weight (sometimes 40 lbs in 3 weeks) before finally my doctors told me to have j-pouch surgery. I was 44 years old and nobody else in my family had this disease. My surgeon didn’t remove my rectum though and my scars are different than his. My incision site goes from my belly button vertically down to my pubic bone. My ostomy site is on the left. I had a terrible time with surgery and take down was relatively sooner than everyone thought because of multiple bowel obstructions necessitating hospitalization – so take down happened in 6 weeks. I was in the hospital 2 months from initial surgery until they finally released me after take down surgery. The next 6 months were very difficult; diapers, butt burn, feeding tube, depression and 3 home health nurses. I cannot eat many of the foods I couldn’t eat when I had my colon and so my diet is limited. I was on steroids for 5 years and 2 years after take down surgery finally got off of the steroids. I hated those drugs. There are times I try certain food, and then pay for it! I was told bathroom visits would be about 9 a day – mine are between 10-13. It is a better life though – before I was trying, like Mark, to stay so healthy and I was always very ill. Looking at the documentary/photo journal brought back so many memories – thanks (I think :)) for the memories. I hope your health continues to improve.

  2. mdhilton said

    Great to hear from Laurie! thanks for sharing your story, although not the most happy memories – it is nice to reflect on what it was. This very time last year in reflection I was one month away from step 1 surgery, and we were just headed into the GI’s office to make the final final decision to okay for surgery since the last chance medicine for me (Humira) was not working.

    • Ronja said

      Humira is not working for me either it seems. I can live with the pain but I can´t live going nowhere out of fear I can´t hold untill I find a toilet. My very exit is pretty devastated from fissures. Some people I know and read about didn´t make only great experiences with stoma or pouch. I really don´t knwo what to do. I´m only 22 yet and I´ve suffered on this for about five years now.

  3. Carter Sturdivant said

    Wow. Thank you Megan and Mark for a great web site. I’ve looked over everything you’ve posted, and it seems as though I am experiencing the same things, almost exactly. I had the first surgery nearly 2 weeks ago – the colectomy – and I’m doing pretty good so far; I’ve recovered extremely well. I am still getting used to the ileostomy but I have to agree with you, wearing this bag sure beats having UC by a long-shot. I have had the opportunity to speak with a few other people who had this surgery and all have said they would do it all over again. I truly appreciate the page you have put together. I have two questions: 1) Would you recommend the ‘bag belt’? 2) I’ve considered putting together a video of my experiences with the surgeries to post on YouTube. Would you mind if I included a link to your web site?

  4. mdhilton said

    Carter,

    Glad to hear you are doing well after step 1, you’ll be pleased to find how much stronger and better you’ll feel in just a few more weeks. Yeah, the ileostomy loses its negative features when you don’t have to feel UC sick any longer. To answer your questions:

    1) The belt helped me because I work construction and so it kept the bag out of the way, but towards the end of my ileo I didn’t even use the bag for work. I think it is a great feature for people who need to keep the bag out of the way, or if you aren’t comfortable with the bag. But for me the bag rode up and never stayed in place, and it was hot as well. If you don’t mind your bag the way it is now, I would say to not bother with the belt if it isn’t getting in the way of your life.

    2) Sure, it would be great to have you connect our site your you tube page. I think is is good for anyone to share their story any way possible. Also, when you get your you tube up, let us know, we are planning on making a “resources” page on our site so that others can find all the great uc/jpouch resources out there.

  5. CindyW said

    Thank you for these messages! Mark and Megan, bless you for documenting your experience!! I have battled UC for 13 years, I am a 44 years old female. In the summer of 2007, I lost 40 pounds, became very ill and weak. After a 3 week hospital stay to try and safe my colon, it was decided to remove the colon and set up a temp. ostomy in Oct. 2007. On May 20, 2008, I had the 2nd procedure with the J-pouch made and left rest. It was a harder surgery than I expected, I ended up going back into the hospital due to a blockage. I’m just starting to eat soft foods. It has been a struggle, but I hope in the end, it will be worth it. I will have the take down surgery the end of July, 2008. I am worried about my system functioning again, the incontinency, and the “butt burn” I read about, however, I am hopeful for a speedy recovery. Trusting all goes, well….CW

  6. mdhilton said

    Hi Cindy,

    Sorry to hear about your struggles, the good thing is that you are slowly on the road to recovery (with some bumps it sounds like). Yes, the jpouch surgery can be tough on people and then dealing with any blockages will drain you both physically and emotionally. For me the surgeon said that if I was able to hold the mucous that was draining from anus while having the jpouch healing inside and using the temp ileo, then I would likely not have incontinence. He was right and I haven’t had incontinence. And the butt burn is really manageable, there are great creams, and it is somewhat food related, you’ll figure it out quickly how to AVOID it. For me the butt burn has been mild.

    Just hang in there, it will get better but you must be patient. Also, if you don’t already visit the excellent support group at http://www.jpouch.org you should check it out, you will be suprised to find how many others are in like siutaitons to you. It doesn’t make yours any less important but it is nice to exchange info and get positive hope for the future there – especially from others who’ve been there, done that, and now are happy!

    Also, if you find you are “worrying” a lot, or writing stories about what could be, what may happen, thinking about what you are afraid of. You may need to find some books, or new coping tools. I know Megan really relied on meditation, and books from people like Eckert Tolle Power of Now, and Pema Chodron “When Things Fall Apart” to help her settle the worry in such extreme situations. Take care, Mark

  7. CindyW said

    Mark!

    Thank you for your quick reponse, suggestions, encouragment, and information on a support group, I will check it out. You are appreciated!

    Have a good day,
    CW

  8. ericmills said

    Hi Mark and Megan,
    I’ve been commenting on the flickr photos because that’s where I initially found you guys. I have a proposal: I’ve been considering writing a book about Colitis from a patient’s view and specifically dealing with the little things, like tricks for getting through the tedious hospital stays. I’m also an avid blogger and web designer, and I was considering setting up a blog to test out some ideas. Since your blog is already so great, I was wondering if you would consider adding me as a user to post some entries. The main reason I ask is because, as we know, Colitis is HIGHLY subjective and no two cases are exactly alike. Perhaps another story and point of view could help reach more people. Instead of setting up a different site, I would like to contribute to your site and help grow the community. Here is a site I started but couldn’t maintain http://ibdmatters.blogspot.com/ with more than one blogger, a site can really take off! Please email me directly at eric at eamills dot com and we can discuss this further. I think it would be great. Thanks, Eric

  9. mdhilton said

    Hi Eric,
    Thanks for your post. Megan said she sent you an email to discuss this further. Mark

  10. Jamie said

    Thank you so much for your site…I am not suffering from UC, however I have an ileostomy which stems from bleeding ulcers way back in 1998. It started with the removal of my stomach (3 major surgeries for that), then the diahrreah started. About 50 time per day. One day I woke up and I was severely constipated. That lasted for about 6 months and it was decided to remove my colon. They left the rectem, so now I am getting an opinion for a take down. I am very scared because I seem to have bad luck when it comes to health issues. My surgeon that I’ve had from the beginning will not do a take down because she thinks my belly looks like a cacoon tangled with adhesians. So, off to Mayo we go on July 22. Any advice for me? If they say it can be done safely, how do I make a decision…..
    Very confused and afraid!
    Thanks again, your site gave me some help…..
    Jamie

  11. mdhilton said

    Hi Jamie,

    Sounds like you’ve had a long road. I had no idea that bleeding ulcers advanced to ileo stages! That is good though that you are seeking another opinion, we sought multiple opinions until we felt that there was enough information to know what was the right decision for me. But as you probably noticed it took me 3 years to make that decision, so you are asking the million dollar question that is asked by almost everyone who has the “option” of jpouch. I think the best advice right now is to tell you to embrace the journey, look at all this is a positive situation no matter which option you choose (if you have a choice that is). Keep you mind open, and don’t have any expectations. This should help somewhat with the decision process. Then next thing is that you’ve been living with ileo this long, you can continue to live with it till you know 100% what is the right decision. And lastly is the big big big biggest thing: START TALKING ABOUT IT WITH FAMILY, FRIENDS, AND SUPPORT RESOURCES. We live by the support system we’ve had at http://www.jpouch.com, where you would fit right in trying to make that decision and getting info. We don’t see bleeding ulcers on their often, but I bet if you put it out there we’d find others with a like story.

    Next we also need to get your language to shift from “very confused and afraid” to “seeking clarity and curious.” Your health will do its thing and you can’t control that, so the only thing you can control are thoughts about how you meet this challenge. If you want we do have some books that I know Megan really clung to to get her through fear and confusion (a big issue for her) and into a clearer state of mind. We’d be happy to start a dialogue with you either here on the site or through private email, or maybe we’ll find you http://www.jpouch.org.

    Holler with anything, Jamie!
    Mark
    (megan too but she’s attempting to cook our dinner and yapping at me about what to say here 🙂

  12. Jamie said

    How AWSOME of you to offer private e-mail chat, if you will! I would love and appreciate it so very much. Please help me start the process…. You are two very awsome people and I give you so much credit and applaud you for your seeking out people who need help. This is so much what I need right now….thank you thank you thank you!!!!!
    Jamie at jlmikk@charter.net

  13. Megan said

    Hi Jamie,

    We can be reached at mdhilton@gmail.com. Feel free to PM (private message) with anything. We do of course understand that some people prefer PM for privacy reasons, but we also encourage people to share conversations online for others to see – this is how we keep our support community thriving. So, if there is anything you are comfortable with outside of PM, please post it here or you can try something like http://www.jpouch.org. At jpouch.org you’ll get our voice as well as many others. Look forward to helping you start the process either by PM or public.

    Holler,
    Megan

  14. mdhilton said

    Jamie,

    Here is an excellent video on a woman who had ileo and then making the decision to go to a jpouch. Her situation is different than yours b/c she finds she has not UC but Crohn’s, but it her story and it is good to hear because she is doing so well even with all her challenges:

    http://wrongdiagnosis.healthology.com/hybrid/hybrid-autodetect.aspx?content_id=1841&focus_handle=colitis&brand_name=wrongdiagnosis

  15. Jamie said

    Hi Mark & Megan,
    I’m sorry I haven’t gotten back to you, been gone for a couple days, but I do have to check a couple things out before I tell you about some things….I just want to make sure I am understanding it correctly before I explain it to you!!!
    Thanks so much again for your care and concern.
    Jamie

  16. NATALIE ARGUELLO said

    MARK AND MEGAN,
    I WENT THROUGH THIS SURGERY THREE YEARS AGO WHEN I WAS 23 YEARS OLD. I AM NOW 26. I WISH I HAD READ THIS ARTICLE BEFORE I HAD THE SURGERY. I WAS REALLY SCARED AND I DIDNT HAVE A DETAILED DOCUMENTARY LIKE THE ONE YOU HAVE POSTED. I WAS DIAGNOSED WITH ULCERATIVE COLITIS WHEN I WAS 19 AND AFTER NOT HAVING A LIFE AND A LOT OF PAIN AND SUFFERING, THE DOCTORS DECIDED TO GO THROUGH WITH THE SURGERY. IT WAS VERY PAINFUL FOR ME BECAUSE THE AREA WHERE I HAD MY BAG, KEPT GETTING VERY RED AND IRRITATED. I ALSO HAD AN OBSTRUCTION TWO WEEKS AFTER MY FIRST SURGERY AND THEY HAD TO RE OPEN MY WOUND TO FIX IT. I HAD A VERTICAL CUT GOING DOWN MY STOMACH AND NOT THE LITTLE OPENINGS LIKE YOUR HUSBAND. SO MY CIT WAS MUCH BIGGER AND GOT INFECTED BECAUSE IT WAS RE-OPENED IN A TWO WEEK PERIOD. FINALLY IT CAME TIME TO HAVE THE BARIUM X-RAY AND YOU ARE CORRECT! THEY DID IT WRONG ON ME THE FIRST TIME. THEY HURT ME SO BAD THAT I DIDNT EVEN WANT TO GO THROUGH THE SECOND SURGERY ANYMORE. I CALLED MY SURGEONS OFICE AND SENT ME TO A DIFFERENT OFFICE TO GET THE BARIUM X-RAY DONE CORRECTLY. I FINALLY WENT TO GET MY BAG REMOVED AND EVERYTHING WAS SUCCESFUL. I NOW GO TO THE BATHROOM MANY TIMES A DAY, BUT IT DOESN’T HURT AND I CAN ACTUALLY HOLD IT FOR MANY MINUTES. THANK YOU FOR SHARING YOUR STORY WITH US!
    NATALIE ARGUELLO
    SAN DIEGO, CA

  17. Megan said

    Hi Natalie,

    Sounds like you had a bumpy road getting back to health, and it all happened so young. Yes, there are lots of stoma skin irritation issues and I know some people have lots of issues, sounds like yours was more serious than some irritation. We are so glad to hear you have good control holding with your jpouch, did the lenght of time you can hold yours before having a bm increase over the years? We’ve heard Mark’s pouch will expand as the years go on, especially at around the year Mark.

    Also, thanks for saying hello, we love to hear from others – keep us posted!
    Megan

  18. Jamie said

    Hi Mark & Megan,
    Sorry it took so long to get back to you, but as I said, I had to research some things….turns out I do not have a J pouch. I did after they removed my stomach, but when it got to the removal of my colon, they totally “redid” the J pouch deal and removed that portion. Now I am attached like this….my small intestine is attached to my esophogas and then comes out to my stoma. Then the rest of my small intestine sort of floats around in the abdomen because that end is no longer attached to anything. I’m hoping/praying that they will be able to take down the ileostomy and attach that portion to my rectum. It will all depend on how risky it will be and if Mayo is willing to take me on. Chances are they will not. Say a prayer for me!

    Thanks for caring for all of these people, including myself…..it really does help to have people that care.

    Take care,
    Jamie

  19. mdhilton said

    Jamie,

    Good to hear you are getting to the bottom of what is inside! Knowing and having the facts is a HUGE part in feeling more calm about things even if it isn’t the way we wanted. Even if you can’t have a pull-through, you will be able to live well with the ileo. I know there are lots of people who are happy and healthy with the ileo, like Chelsea here: https://ucstory.wordpress.com/?s=chelsea

    wishing you good health!

  20. Jamie said

    thanks for everything…..
    Jamie

  21. Jeremy Harris said

    Good stuff! In the past couple of years I went through almost the same exact thing. I had a question about weight gain – I struggled to gain weight(weighed 108lbs when i got out of the hospital from my 2nd Ostomy Takedown surgery) and probably weighed between 118-133 for a year after that. Finally in the past year and a half or so i’ve been able to gain weight and finally put on some muscle/fat.

    It might of been poor diet, but I did try for a while to put on weight(weight gainers, even doing 4000calorie a day diets) and it was still really difficult.

  22. Megan said

    Hi Jeremy,

    Weight has been an issue for Mark as well, at 5-6″ and 120ish UC weight, now after surgery he is 140pounds. Not sure how the weight gain happened. I figure he/we eat pretty healthy overall, try to eat balanced, eat mostly organic, lots of bread, pasta, veggies, white meat, etc…Not high in sugar drinks, mainly water and some gatorade for sugar/sodium to hold the water. But Mark also uses his body for work being a contractor so he is lifting and using his body and I think that helps keep the muscle mass. I think more than anything just an organic and balanced diet with a good amount of excercise is the trick.

  23. Traci said

    This is a wonderful site. I wish I had seen it before now! I just had the ileostomy take down. Funny, because I had this same idea and took my camera to the hospital, but my husband thought I had grabbed it by mistake and took it back home…anyway, I’m really glad you did this for other people in the future. I am glad your recovery is coming along well. Best.

  24. Megan said

    Thanks Traci. Oh, it would have been great to have had a woman’s perspective in photos from the surgery. I know just as many woman have it as men! Hopefully, a female will document the surgeries like we did so that other women have that perspective.

    How is your recovery going?

  25. carter99 said

    Hey Guys,
    I think you mentioned that Mark started taking immodium around 2 weeks after ‘takedown’. Do you remember how soon he started taking fiber supplements? I wasn’t told not to take that stuff or at even hold off for a while; so I’m of the thinking that if they didn’t say ‘not to’ then it must be fair game.

    Carter

  26. Traci said

    Thanks for asking. My recovery is up and down. Sometimes I feel like I have a handle on it and others like last night and today, I am in the bathroom every hour. I am hoping this is normal. I am trying the immodium as recommended by my doctor as well, but more often than not it works too well and I end up feeling, well, constipated but still feel like I urgently need to go to the bathroom. Did your hubby ever feel this way? Did the metamucil help? I bought some but haven’t tried it yet cause I have a follow up on Friday and figured I’d ask the Dr.

  27. mark said

    Hey Tracy and Carter,

    Under photo 12 on this page, there is a link “How Imodium works” – click on that link Tracy and read about how our body processes a medicine like imodium, Jan Dollar really explains it well. Once you understand how it works you may find you have better success with it slowing down your movements.

    As for fiber, I started “Benefiber” in the hospital and now I take metamucial. My info here is rusty, but Benefiber is a soluable fiber so after step 1 and when in hospital after step 2 took benefiber. Then when home around week 4ish once I was having semi-regular BMs I moved up to Metamucil. But metamucil is a thickener so it can be hard on some people b/c it makes things too thick. for me it works well, and now I take it once a day, usually at night time. And I take between 2-4 imodium a day depending on how things are going. When you take fiber, watch for gas. If you get gas increase, cut back on the fiber.

    Tracy,
    If you are having urgency, you should definately talk with your surgeon or GI, you may need an antibiotic for some type of pouchitis or cuffitis (not serious so don’t panic) but they may just be something potentially causing urgency. Also, you should post a question on http://www.jpouch.org and ask about urgency and you’ll get some better answers than mine probably.

    Mark

  28. Erin said

    Hey Megan and Mark – I had my reattachment about 4 weeks ago, and it seems I JUST figured out a few things to help me. I take immodium once a day at 6 pm. I’ve been having 6-10 bms a day with 1-2 at night. I had horrific gas, but take gas-x after every meal and once in the middle of the night. I panic sometimes thinking, how am I going to live the rest of my life without my colon and with this j-pouch??? I went through really bad withdrawal from the opiates I was on, and was in the hospital for 10 days before my reversal because of a blockage. My back still hurts a bit as well as my stomach muscles, but it now seems to be subsiding some.

    I’m glad you’re doing so well, Mark! I hope everything keeps going up for all of us!!!

  29. Rob said

    Hi Erin, First of all I hope your not panicking as much. Easy for me to say right? Many of us panic about life’s uncertainties but you have to keep the faith up. Without that I would be nothing and a total mess. You mentioned Imodium. Ask you Doctor about LOMOTIL. I take 6 in the morning and I’m fine right to the next morning. I don’t know what I’d do without it. It’s an RX and the max allowed is 8 daily. Take good care of your self Erin and you’ll be fine.

    ROB

  30. Rob said

    Hi Mark and Megan, I emailed you privately before Mark but I forgot to tell you that after all I’ve been through, seeing your picture with the bag was the very first time I saw anyone with the guts to show it. That second you changed my life so much. Not that I was ever inbarest about a stoma but I never showed anyone at all (just scared I guess). Like I told you before, I’ll be going under the knife again within 2 weeks 4 a permanent colostomy and I’ll post the pictures. I never would have thought about doing that until I saw your photos. Helping others is what I’m all about.
    BTW…YOUR TWO REAL SPECIAL PEOPLE,

    ROB

  31. mark said

    Erin,

    Be sure to read this post about how imodium works, Jan Dollar explains how our body takes imodium, when you understand it you might be better able to use the imodium to benefit you more.

    http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/5601080242?r=5601080242#5601080242

    I too had really bad gas, but that has settled down now, just be patient and give your body time to adjust. As for the gas, are you on any fiber, I know fiber can cause gas for some people. Do keep us posted, let us know how your recovery goes!

    Hey Rob, I am so glad the photos helped you, Megan was really good about normalizing my bag, photos were her way of showing our family/friends what we were dealing with. We figured we’d share it with the world since you gotta admit, it is kinda cool and weird to have an ostomy. Whats funny with the ostomy was how normal it became in my life so quickly. I guess anything was better than feeling UC sick. How long have you had your jpouch? And why are you losing your jpouch? Did you have UC or Crohn’s?

  32. Rob said

    Hi Mark, I had Colon Cancer when I was real young and 15 years later it came back but this time it spread to my butt. It was all removed surgically so no reason for chemo or radiation this time. Since then I’ve had 6 surgeries with no success so I have no option but to have the colostomy. I think I handled the bag like a trouper but of course I’d would rather not have had it. Now I have a hernia in the same place my stoma was (incision hernia). Actually I’m having 3 surgeries in one. The Colostomy, the hernia repaired and butt closed. You could imagine how much I want this over with and my life back. I know that when this is all over I’m going to be better than ever.

    ROB

  33. Rob said

    Hi Mark & Megan, Weird and cool it was.
    I’ll be going in the hospital on the 8th of August . This time the stoma is going to be on the right side. Three surgeries then back to my room, I’ll wake up and scream WHY ME!!!( just kidding). I really look at all of this as a blessing. I wish more people wouldn’t fall victim to that “self image “ thing. It takes to much time and energy away from what’s really important. I know I’m in for a lot of pain and that bothers me a lot. I remember the last surgery the pain just took over. I was a mess so this time I told the surgeon to just keep me drugged up to the max. I’m usually not like that but enough with the pain already!!

    Take care you two,

    ROB

  34. mark said

    Rob, you seem in a good place to be having the surgery. On the 8th, little Emily at http://www.sweetsliceoflife.blogspot.com is also going into surgery. So, hopefully both of you will be getting a new lease on life those days. And I can’t agree with you more that the boddy image thing is shame, but as we know how important body image is, and how devasted it can be with these diseases and surgery.

  35. Mitesh said

    Hi, Mark

    I am a 19 year old student, I was diagnosed with Ulcerative Colitis at the age of 15 years old. Through my years of suffering with this I have tried several medications although still have a bad condition and no medication seems to help me. After reading your story it has really gave me the courage to think about having the operation although I still fear of it. How long did it take you to recover fully after the operation? Was it a painful situation to go through?

    Thanks

    Mitesh

  36. mark said

    Hi Mitesh,

    This would be a really hard disease to have during your teenage years – sounds though like you are considering surgery pretty seriously? Deciding on surgery is really one of the hardest decisions myself and my family has had to make. I tis consider an “elective” surgery and yet seems so scary because it is such a major major surery and who knew we could live without our colons?!

    What I can say is that for me the process of decising to have surgery took about 3 years because it was scary to me as well, some people make the decision quicker – you’ll have your process making htat decision. On this About Us page are some links about 34 paragraphs down on the page that will link you to other posts where people are talking and asking about “how did you know it was time for surgery” you should really look at those: https://ucstory.wordpress.com/about/

    And below is the link to an excellent webcast about making the deicison for surgery you and your family should really check it out, it will help to remove some of that fear when you better understand why doctors recommend the surgery, what it means, etc..

    https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    As for me, my recovery from step 1 took about 5 weeks, and at about 3 months I was feeling totally normally, and then after takedown my recoery was quick and was only about 3 weeks that I was down and felt great really quickly after that surgery. And for me the pain wasn’t too bad at all, I think after years of UC this pain was welcome because I didn’t feel UC flu sick anymore. If you are worried about potential pain, you should definately talk with the doctors about that, and also you could inquire some jpouch.org and find out others opinions on that as well. But pain shouldn’t be your main focus, I think it comes and goes with the surgery pretty naturally.

    Mark

  37. Mitesh said

    Hi,

    Mark

    Thank you ever so much for the information you have provided, I shall take a look through the websites. Just one more question, Do you feel you live a normal healthy life after the operation? Due to myself being very thin not being able to put weight on, i was wondering would this be the case of having UC?

    thanks

    Mitesh!

  38. mark said

    Mitesh,

    I just put up this detailed post about my 9 month status point. Click on the link to get to the post, I have pictures and all. You’ll find that I do address my weight and I talk about how 100% normal my life is these days. THe only thing I have that reminds me I have a jpouch or once had UC is this blog –

    https://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

    Mark

  39. jay said

    Thanks a lot for publishing this. I ahve been struggling with UC for a few years now. You have answered so many questions I had.

  40. Laura said

    Mark and Meghan-

    Thank you so much for your blog. I am 24 years old and, after suffering from UC for 3 years (an active flair for the last year and a half) and running out of drug options, I have decided to undergo surgery to “cure my colitis”. This is an especially difficult decision for me (not that it is an easy one for anyone) as my husband and I are living in the UK and all of our family is in the states. The next few months will surely be difficult but I thank you for your extremely informative blog and am sure I will refer to it often. I find it very full of hope.

    Laura

  41. mark said

    Hi Laura,

    With your family away you may want to create some sort of blog or something for them to follow and support you through the surgery. We found having the photo blog for our friends and family was a great great source of support!

    Also, you can find good support on http://www.jpouch.org (tends to be more U.S. people there, but some people from U.K. use that board).

    But at http://www.iasupport.org/ this support group is primarily used by people in U.K. and Europe. Which might be good for you if you need U.K. info.

    Keep us posted, and yes this site is full of hope because you will regain your life back after surgery and no longer need to live sick!

    Mark

  42. Juan said

    Hi,I watched your pics mark and they are helping me a lot,i made a coment in the other site about 10 month ago may be you remember me,good luck

  43. […] is excellent as it means that once son has recovered from this surgery and, fingers crossed, the ‘take down’ surgery he will be almost back to how he was 2 years ago and before his ulcerative colitis […]

  44. Dana said

    I just wanted to say ~ I really appreciated this post. I am about to have my surgical takedown Nov 10th and this has helped.

    Thank you both

  45. Eric said

    Dana: I’m having my takedown on the 4th of November, if you would like to compare notes or have a takedown buddy or whatever, I think it’d be cool to talk to someone in real time going through exactly the same thing. Let me know, you can comment here and I’ll see it.

  46. dani said

    Thanks for your blog, im 17 and had my reversal 3 weeks ago and im still having really loose stools and kinda miss the freedom of the bag but hopefully soon the urgency will go away and my stools will become more solid and someday i will be able to eat like you in the last pic ! Dani

  47. mark said

    Hey Dani,

    You may want to visit http://www.jpouch.org and find out how others BMs go after takedown, I know that many people on there have a period of time after takedown where their movements are loose and it just took time for it to thicken up. Also, talk with your surgeon (or GI) about starting an anti-diarraheal like imodium, and with your doctors okay, you may want to try a fiber supplement to help thicken things up like Metamucil (but fiber seems to give some people gas which can maybe not feel good for some people with a jpouch) – Again, check out jpouch.org and ask there how others manage that loose stool in the beginning.

    Stay well,
    Mark

  48. Kathy said

    HELP…I am currently with my 19 year old son in the hospital on day 8 after take down surgery. He started vomiting 2 days after surgery and had to have an NG tube up his nose and down his throat for 1 1/2 days. I feel he is being pressured to leave but he is eating next to nothing and barely walking because of constant nausea. He has lost a lot of weight. He is off the IV and and is drinking plenty of water. He has loose stools but doesn’t eat anything to thicken them up. The nausea meds don’t help that much. He did not have nausea at all with his first surgery. Have you heard of anything like this before?

  49. mark said

    Hi Kathy,

    I’m so sorry to hear about your sons situation right now – you must be very concerned. I’m personally not familiar with his situation but you should visit http://www.jpouch.org and ask on there if anyone has any experience or advice for you. I find http://www.jpouch.org to be the best support forum for quality jpouch surgery related info.

    Mark

  50. Eric said

    Kathy, First off: you should not be pressured to leave the hospital, ever! For my second surgery, I had some complications and I was in much the same state as your son: NG tube, weak, vomiting, etc. I actually vomited the first day out of the hospital, too. Here are my thoughts, get him to eat! You might even have to feel like you are forcing him (verbally, not physically!), I know how tough it is to feel that way and not want to eat, but the fact is, solid food and the ability to digest it are your ticket out of the hospital. Without this, and BMs slowing down, you are at risk for dehydration and malnutrition. Oh, and GET HIM TO WALK.

  51. Yves et Nathalie said

    Thank you so much Mark and Megan for your wonderfull site!
    It help both of us!!!
    Yves had his colons remove on september 17th after almost six years struggle with UC and the j-pouch operation is set on january 20th. He gains 25 pounds and he’s feeling really good…no pain and we can both sleep all night (only three times, he had leaks problems)!!! He is able to go skiing but can not work for the moment. He’s a firefighter and the city prefer that he gets some rest for the next operation…question of insurance too!!!

    We’re from Québec, the french canadians…
    so sorry for our english writing!!!

    I would like to hear from you and your girlfriend…how she was able to deal with her anxiety and help you more to go througt this other step.

    Thank you again…I feel better this morning after reading your story!!!

    Yves and Nathalie

  52. Megan said

    Hi Yves & Nathalie,

    So pleased to hear that Yves is doing better – sounds like he was sick about as long as Mark. Talk about a welcome change when they get healthy again, even if it means healthy with the ostomy bag, right?

    You asked about how to deal with anxiety and you more throughout the next step and for me the hardest thing was helping Mark make the surgery decision and our prep going into step 1. I was really tense and anxious during that phase. By the time step 2 came (3 months after step 1) we had learned that if the jpouch didn’t work that living with the ostomy would be okay, so that soothed a lot of anxiety. Also, the jpouch surgery and recovery was a lot easier than step 1, but what was hard was some of the symptoms early on with the jpouch adjusting felt to Mark like UC. Especially during the first two weeks or so when he was pooping lots and up all night, his skin hurt from using his anus again. This was a hard time because he was concerned maybe he should have stayed with the bag, but those symptoms quickly passed once his jpouch settled in and he has never regretted the decision.

    I think for us the biggest thing for anxiety is that we always worked together as a team, he would work not to take out bad moods on me, and I would hard to not blame him for being sick, or being out of work, etc…That way then we didn’t add any more stress to an already difficult situation. We just learned to be really gentle emotionally with each us and know that we were a team, no body was to blame for our problems, and Mark and I have always had an unspoken rule in our house that if one person is down (blue/depressed/scared/anxious), the other person has to be positive. We knew that only one of us could be down at a time, if both of us were down at the same time then if felt really heavy in the household.

    Here is a post he did at his 9-month jpouch update that may be encouraging for you both: https://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/

    Please stay in touch and you might want to read through the previous posts and find posts by Jenelle. Jenelle is a Ph.D. Candidate in Psychology and about to get her jpouch and on the site she offers great thoughts about coping and more, plus, she is Canadian – not French Canadian though.

    Stay in touch,
    Megan

  53. Michael said

    Hi, Mark and Megan. I’ve spent all night reading and looking at your pictures and thinking about all that you’ve went through. I’m 18 and was diagnosed with UC over 2 years ago. I have not had the greatest of times with this disease. I am/was very very active, I am supposed to play college tennis next year on a scholarship to a nearby college. I have tried just about every medication possible, you name it I’ve been on it at one time or another. Also, I’ve been on prednisone ever since I’ve been diagnosed, I know there are problems that can arise from being on that steroid for long periods of time. Do you still take medication at all other than imodium and metamucil? I take pills like candy and am really getting sick of them. I see a specialist that is going to try this new injection on me called Cimzia. Ever heard of it? If this doesn’t work I am seriously considering surgery… Anything you have to offer would be greatly appreciated. Thanks. Hope all is well.

  54. mark said

    Hi Michael,

    Congrats on the tennis scholarship. Sounds like you need to figure a way to get your health back so you can use that scholarship fully. I’m assuming your GI has mentioned surgery to you so that is why you are doing research, etc..? You should take the time to listen to this great webcast that was hosted on Colitis Health Talk about making the decision for surgery. They talk with a surgeon and she explains how doctors base talking with patients about surgery and why. It should help you understand the medicines, like prednisone and the surgery decision:

    https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    I haven’t heard of Cimzia but the meds change so quickly that it could be new since I was on UC medicine. You may want to post on healingwell.com/community on the UC forum and see if anyone there with UC is on Cimzia.

    I am not on any medicine other than taking fiber and immodium, but I don’t even take those all the time because I get lazy or like you I don’t like always having to take something. I don’t have to take the fiber/immodium but they do help slow me down and thicken up my BMs.

    If you are considering surgery, you should listen to the webcast, then go to http://www.jpouch.org and post on that forum about your considering the surgery. It might be helpful for you to hear what others say about how they made the decision and stuff. As you can gather from my blog, I am doing well and really happy with my decision. It took me years to decide but when I did decide I knew all my medicine interventions weren’t working and I was ready. I had lots of family/friend support and I scheduled the surgeries for the summer time when it best fit mine and Megan’s schedule. My advice to you is to also send you parents/support system to our blog and get them on board for what the surgery would mean and the recovery time. And from there as a family you can start making decisions that are best for your health and future.

    Keep us posted, and if you ever want to blog your story and decision making process on our site, let me know. Having an althete tell their story would be very inspiring to many others.

    Stay positive,
    Mark

  55. Yves & Nathalie said

    Thank you SO MUCH to both of you!!!

    You can’t imagine how your website and your email response help us deal with all of the things we go through!!! You know what we mean…

    Wishing you both a happy new year!
    Health and precious goods moments with all your love’s ones

    Yves & Nathalie

  56. Bea said

    Hi Megan,

    These kind of posting are bringing people in pain together.. with so much compassion.

    May you be blessed for such kind work.

    A tiny bit, but not much, off the subject, a lot of bowel disease are linked to degeneration with immune system attacking, food and environment allergies or genetic make up, from what I understand. I have some experience (IBS) and a ex boyfriend with Crohns and want to share a major discovery with testing that changed my life.

    At 42 after repeatedly having tested negative for celiac disease via blood test, a rheumatologist sent my lab work to L.A. to look at dna and they found out that I was celiac. So my diet has dramatically changed, I am still in pain once in a while because eating out is just a nightmare avoiding gluten, but I have incredible energy and know that from now on damages the intestinal lining has ceased. I had lived with pain and cramping for all my life.

    That’s all I wanted to say.

    Do test for celiac via the dna. otherwise source of problem goes unscreened, and further lining damage persists past repeated surgeries.

    Take good care,
    Love,

    Beatrice

  57. KDelphi said

    I would like to know anything anyone knows about whether going back to an ileostomy stops the rectal and vaginal pain and the arthritis (with constant electrolyte imbalance?) of a j pouch…any info or links greatly appreciated…I just cant seem to find out anything and my surgeon “cant say for sure”!

  58. patti said

    i read about your journey and i am glad that it worked for you. i was in the hospital for 9 weeks before the doctors did the colectomy.
    i then went homne to recover. then i had 2 bowel obstructions and once again had to be admitted.
    after 3 months i was well enough to have the take down surgery. all this was about 10 years ago.

    about 6 months ago i started having exreme bathroom issues,everything i eat goes right through me and if i am not near a bathromm/bad things happen.
    there is no pain but could this be pouchitis or something else. i am back to living in the bathroom most of the day and nites also

  59. Justin Hoeke said

    Thank you for this story. I am 30 and have a similar story will be having surgery in late March. I needed to see someone my age do this. Again I cannot thank you enough.

  60. Leroy said

    Just found this site while wondering just how many people online have had the J-pouch.I have to give mine up to F.A.P. which caused cancer.Cancer was removed with full colon removal.I was in HP for 2 days first for jpouch and 1 day for reversal 3 mths later.I was just reading about the page why you had to have this and wanted to see if you maybe made a mistake there.It says that the UC caused the removal of entire colon and the rectum.I was handed down this through the family genes and my mother had FAP also but her cancer broke through the colon walls and she had to go through kimo and now has a bag for life.Hers was not caught early and is the only reason that I caught mine early and could have the J-pouch setup.I also had my children tested and one was found so far that he got the gene.What I noticed is that you stated you had entire colon and rectum removed.Now I was told that the rectum is where you control removal of waste. Without this you have no control of stopping waste from exiting the body,which means that you will require a stoma/bag for life and rectum is sewed up(my mother was forced to this due to cancer busted through wall and spread to other organs and rectum because it was not caught in time).If the rectum is removed then there is really no reason for a j-pouch to even be done being your going to have a stoma for life as a means to capture uncontrolled waste.Now I am not sure , maybe they changed things and there is some sorta new manual operated valve they install now in place of rectum removal.Just wondering if it was a mistake.

  61. Jeff said

    Hey Mark and Megan,
    I realize this site is old and I’m not sure if you guys still respond to posts, but I figured I’d try. I’m a 23 year old male and I’ve had UC for about 3 years now. Medicine seemed to work at first but over the past year, I’ve had serious flare-ups and have been in and out of the hospital. I’ve met with a surgeon and decided that surgery is the way to go. Since then, I’ve been searching the web to find information on the surgery. I’ve scheduled surgery for this coming Tuesday, March 29th. I just wanted to thank you guys for your very inspiring and helpful story. Your site has been extremely helpful, I think you guys are wonderful.

    Jeff

  62. john said

    hi.. im a nursing student.. and im learning about the IBD(UC,Chron’s), different types of pouch, what does it look like and all that stuff.. and ur blog helps me to understand the subject more.. to see the disease and treatment in a patient’s perspective.. and i thank you for that.. good luck with everything!!

  63. miserable said

    Listen man I have had crohns for 8 years and my first reaction was depression and smoking tonz of weed …. after started to get anti social still didnt get out that much cause of the anxiety and embarrassment of public area going to the washroom…. tried harbs meds started to try acupuncture…..how is your life now compared to before how much percent has it approved by i was going to get the surgery was to angry and depressed to do it ?

  64. Amira said

    Hi, mark and Megan
    I have UC for about 10 years and I’m starting to go to college with my UC. I was wondering if that your J-pouch is it outside or inside? And if it’s inside how does that work? My UC affects me when I eat fast foods or cola drinks, or psychical activities like running and water rafting. I’m taking Lliada for about 4 years and its been doing great I don’t use the bathroom or have as much cramps-unless I eat bad foods/drinks. My doctor said its a possibility that I’d get a J-pouch if my intestines don’t get better. But since you got the J-pouch have you been able to do stuff and eat foods more then before? And really, how does it work if its in the inside?

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  66. laurie said

    Thanks Mark your journey through j-pouch surgery is inspiring and has helped me so much . I am currently deciding to go forward and have surgery if Dr. agrees as Im sure she will. I have a scope next week am in a flare 3x in 8 mo, have had UC for 25-30 yrs , a dysplasic show 8-10 yrs ago. They sugested J-pouch then and I chose a wait and watch approch, had frequent scopes all good. Periods of remission up to 3 yrs then UC rears its ugly head again, respond to 60mg or as low as 20 if i catch it early , Asacol 400mg 4-19 daily . I am 52 and have decided this is not going away what am I waiting for surgery at 70 or continued flares into my however many yrs ahead? or the dreaded Cancer, I must have a huge %risk. Surgery has always been so daunting until now , reading other blogs and stories and especially yours has really given me a much more positive outlook and certainly calmed my fears. Thankyou so much, best of health to you.
    Laurie

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  68. Diane said

    I admire the both of you for being strong during those trying times. I stumbled upon your website looking for more information regarding take down. and thank God I was able to read this. Very informative and helpful as it is from the patient and carer’s point of view. I’m sure my husband can relate to Megan when it comes to wanting to scream sometimes especially during my mood swings.

    I am battling with dehydration as my output is more of a liquid form, it caused me being in and out of the hospital month on month after my 1st surgery. Now my output still ranges from 1300 to 1500 per day though I am taking 2 loperamide capsules every 6 hours. Doctor said it’ll be better to put it back as it is causing more harm than good unfortunately.I might be scheduled for takedown 1st week of January. Hope everything goes well.

    Best of health to yhe both of you. Thank you so much.

  69. Irene said

    Hi Mark,
    Your story has been my bedtimestory for the last 7 months. I had UC and is now only 3 weeks away from takedown. Thank you so much for sharing this, it helped me and my family a lot, botg in the US and Denmark.

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  73. Colitiscutie said

    Thank you so much for sharing! Going to my first consult with colorectal surgeon next week!

  74. PAMELA said

    I too went through the rough journey with UC, no have a J-pouch- awesome. I lost 45 pounds before—now I am gaining all of my weight back and more… Glad to see everyone doing well with this. Ya, the journey is bumppy–but in the end the ride was well worth it.

  75. PAMELA said

    I had my colon removed 04/15/2014 and my take down was 10/14/2014….The best decision i have ever made..

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