UC to J-Pouch Story

Photos 2: Ileostomy

 Life Inbetween Surgery #1 & Surgery #2

(3 months between surgery #1 & #2)

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)

**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. 

Picture 1:  Stoma and Scars

Here is the stoma (temporary loop ileostomy) after 6 weeks. We put a quarter there so you could see scale. His scars look good, and he has a shaving rash under his belly button. Overall his skin is doing well under the ostomy wafer, but there is some redness, not too bad though.

The south scar is flat and healing well. Look at the scar above in his belly button, it looks pretty good, eh?

Picture 2: Mark and Dad- 9 days after step 1 surgery and 9 days living with new stoma

Mark is reading about how to care for his ostomy shortly after the July surgery. He can’t work but he is there giving his Dad moral support. Ironically he is reading in this picture a SUPER helpful post that was on jpouch.org site. Jason’s Ostomy Instructions taught Mark about how to care for his ostomy, way more helpful than what the ostomy nurse tried to help with.  Survival with the appliance is talking with others who have one! Tips for new Ileostomists

 Picture 3: Table from the “No Colon” Party – Be Sure to Celebrate!

We threw Mark a small “Welcome home, you have no colon” party, we had friends come into town and suprised Mark.  We unfortunately were having so much fun, we didn’t take pictures of the actual party.  We HIGHLY recommend that those going through this journey do celebrate the big things (like coming home from the hospital).  It is so important to celebrate our friends and family while we have them with us.

We noticed that from having sent out the photo blog as emails and cell phone pictures to our main people while he was still in the hospital, made it easier for people to support him.  So, at the party our friends/family were comfortable asking to see the stoma, watching it work. And in turn what this did for Mark was make him feel comfortable with the stoma and the situation.

 

We learned to celebrate from watching others enjoy their health instead of mourning the changes, for instance, Michelle had this incredible post running about what is your “best day” and she talks about her colon party:  http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/1681082832/p/1

 

 

 

Picture 4:  16 hour total stoma blockage (how we handled the blockage)

 

 

First, we wrote a post on jpouch.org and received fast responses which you can see here No Stoma output and vomitting Post.  What this did for us was allow us to remain calm because we had support online it wasn’t us going through this alone, but below is how we actually dealt with the blockage.

 

He had his first total blockage of the stoma, for 16 hours he created NO output!  He became ill and vomitted 4 times in 4 hours.  We tried the blockage remedies of hot compress, walking, shaking hips back and forth, grape juice, hot tea.

 

It was the ostomy nurse (whom we called) who said for him to take off his bag, take a long hot shower to see if the stoma was swollen and  to see if the hot shower would help it settle down. After the shower he drank hot tea/water, we massaged around the stoma, and he finally pooped.   He was exhausted and a getting a bit nervous, I sat with him the bathroom and just massaged above the stoma (almost like milking a cow style) to try to gently move whatever along.  Whatever was the problem was gone now.  He was exhausted all day afterward since he nothing in his system and was only on a soft foods for the rest of day.  We were about to take him to the ER to get fluids since that is the biggest concern, but we were saved by the bell so to speak.    We were scared some because his surgeon was now eight hours away because by now we had gone back home.  The stoma nurse said “YOU DO NOT LET ANYONE ELSE COME NEAR YOU WITH A KNIFE – If this is serious we will fly you down here and get you to your surgeon.”  This made us feel better to know there are ways to have surgery in places far from home and get back to the care you had if an emergency happens.

 

4 days later and Mark is still drained from the effects of the blockage.  His body is exhausted and he quickly has reverted back to his UC ways of ‘hating’ food.  The lesson in the story is to really be cognizant of the foods you introduce.    (Update after takedown – we learned that it was likely not food causing this and his other later blockages, but that he had some scar tissue that the surgeon later found during the “takedown”). 

 

*I have to admit this was a really long, and scary night.  It left both of drained emotionally because of the unknown again of what might be happening. Just be prepared to be gentle with yourself and your loved ones helping you through this process — it can be really emotionally draining and you need to give yourself and your family time and room to heal both physically and emotionally.

 

**As we understand having stoma blockages is not hugely common (but not uncommon either), some people do have them, we think that maybe his blockages were scar tissue (surgeon said he found some scar tissue during his takedown).

 

***Ostomy bags come in other styles, and they are not all clear so you don’t have to see your output.  I’m not sure why but Mark likes the clear ones, he is always checking out his output.  I guess it is a good way to learn what foods will do when he starts using his jpouch in a 8 weeks.   Also, if you have a stoma, you really need to watch this thing work, it moves around, breathes, sputters, and if you watch Family Guy and you know Chris’s talking pimple Hank you’ll understand the stoma.

 

 

Picture 5:  Mark 3 Months Post 1st Surgery – Back to Work

 

 

Mark at work during week 13 after step 1 lapro surgery, and doing well. Here is at a job, he built some arbors for a client.  

 

After 6 weeks he felt great, and was cleared by the surgeon to get to work (don’t do anything till the surgeon clears you is the most important rule : ).  Our biggest concern was him lifting things too heavy.  But the surgeon said it would be fine, and he has been back to work for 7 weeks and doing well.  

For those going into surgery a big question is ‘how long will I really be out of work’;  for Mark the first few weeks after week 6, he was back at work, but he would get tired easily, so he did work half days on and off for about 4 weeks.  

 

Also, no complaints with the ostomy bag, life is more normal with the bag than it has been in years.  He is able to lift things and move around without problems.  He does not wear the phoenix belt very often anymore, he found the belt was too hot and restraining for him, but others love the belt and we recommend you try it out for yourself because it may be just what works for you.

 

Picture 6 (series):  Ileostomy and wearing ostomy bag using the Phoenix Belt

*For Mark we didn’t document his changing of the appliance, and this is a question we get sometimes.  There are great resources for learning how to live with the appliance, however, here is a great photo and text explanation 12 Step Tutorial on Chnaging Ileostomy Bag.   Other sources are ostomates.org, and Jason’s Ostomy Instructions (which was really helpful for Mark).  More than anything you just need to find what works for you through trial and error, Mark changed his bag every 2-3 days, his skin couldn’t handle 5-7 days.  Jpouch.org Ostomy & Skin Forum can help you out as well.  Also, here is some info on where to buy ostomy supplies online that we asked on jpouch.org Websites to buy Ostomy Supplies Online.

 

Here are a series of photos with Mark showing how he wears his bag under the Phoenix Ostomy Support System – Belt. We’ve also heard that you can get this belt covered by your insurance.  The belt came highly recommened for comfort and ease of use. It is a little awkward b/c you have to wear the belt on its side so emptying can be tricky, but it does contain that bag which can be helpful.  Mark got the smallest belt size they offered (Small) and he had to have it sewn to make it a bit smaller.

 

 

  

 

 

 

 Dressed with belt underneath. Getting ready to go to a wedding located 1hour away from home. It was so very very nice to go and not worry about Mark and UC problems. We still aren’t used to the freedom of living without UC.  Life with the ostomy is 1000 times better.

 

 

 

 

 

 

 

 

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Here is an interesting video Colostomy Bag Change Video  (not made by Mark and Megan), but it is a fairly graphic representation of how the stoma and ostomy bag works.  Of course, this process varies for everyone but if you are a future ostomate of a temporary ostomy this may help you Visualize how things might work out for you.  The man in the video says he changes his bag daily, Mark only changed his every couple of days.  And his stool seems a lot thicker than Mark’s was probably because he has an Colostomy (large intestine b/c he only had a piece of his large instentine removed) and not an Ileostomy (small intestine, if you are getting a jpouch then your whole large instentine is gone so you’ll have an ileostomy).

 

69 Responses to “Photos 2: Ileostomy”

  1. m said

    Hello, I see you are using my Colostomy Experience video for your blog.

    Watch it in better quality over at http://vimeo.com/409849

    M

    • queenhobart said

      thank you for making that video. i have been miserable with my bag, and you acutally made me laugh. its coming off in a few weeks and i’m SO HAPPY

  2. Abbey said

    Hi
    What an excellent photo diary and very informative. I work in stoma care in the UK and SecuriCare (who I work for) also have a pouch changing video have a look at our website:
    http://www.securicaremedical.co.uk/pouch-changing.asp or you can view it on Youtube ‘changing a stoma bag’.
    Welland Medical our sister company also manufacture a flushable stoma pouch (both flange and pouch flush) which also maybe of interest

  3. Megan said

    To Abbey and our Readers,

    We wouldn’t normally allow “spam” like comments on the site, however, we think that new ileostomates could benefit from the 4 short videos that Abbey’s UK based SecuriCare company has designed. The video on What is a Stoma is helpful in explaining the 3 different basic types of stoma.

    Please note:

    1) We have used any products by SecuriCare or Welland Medical so we do not know the quality of the products. Mark used Convatec products when he had his ileostomy.

    2) The video shows someone with what I think is an end colostomy (I think), you’ll see that the stoma shown in the video is long at about 2 inches, longer stomas typically mean it is not a loop ileostomy like what you see both Mark and Carter have. I think the reason that some stomas are longer is that when they are permanent they function better having a longer stoma. We should ask someone with a permanent ostomy to explain this better to us.

    Megan

  4. JM said

    Megan,
    The video shows somebody with an end ileostomy (colostomies are typically on the left side whereas ileostomies are normally on the right, though this is only a general guideline). Not all end ileostomies are permanent, anybody who had their pouch surgery in 3 stages will have had an end stoma after stage 1.

    People who have had both types of stoma (loop and end) tell me that loop ileostomies are much harder to deal with. This is largely due to the longer spout on an end ileo, this hangs down into the bag and waste falls straight into it. The much flatter loop stoma has a tendency to allow waste under the flange and thus cause leaks much easier.

    One thing I have found is that those who have only ever had a loop never thought it was too bad whereas those who had an end ileo first think they are a real nightmare, I guess the two groups simply have different expectations on how a stoma will behave.

    JM

  5. Bill said

    Thank you for sharing your experience. I am a nursing student working on a GI floor. I learned a lot from your posts. I wish you many happy years to come. You are a brave man, and I admire you.

    Bill

  6. mark said

    Hi Bill,

    I’m glad to hear that it helped someone in teh medical community, especially a nurse. I am convinced that world would come to an end without nurses. I only had one male nurse during all my surgeries, but I really like having a guy. I noticed he was a lot more comfortable with me and my wounds, where the women tended to be more cautious and gentle he just did his work and left – I preferred that. Good luck with your nursing career and thanks for doing such an important career!

    Mark

  7. cindy said

    thank you so much 4 being the brave soul you are i am deciding as i read your journey weather 2 get mine or just deal with the bathroom trama all the time i really appreciate you and megan sharing with us what a great couple with a great play by play god bless yall thanks cindy

    • denice said

      I am baout to have surgery and im very scared of all of this because this is how I will be , how can my husband look at me or even make love to me im so scared of this its awful but i cantr keep going to the hospital every 3-4 weeks to be cleaned out Im so scared

  8. mark said

    Hi Cindy,

    It took me nearly 3 years to decide surgery was right for me and when that decision came to pass, it was so easy to make and felt very right. So, you just be patient with your process and let it happen naturally. At some point you’ll know if you can live with UC or want to live without UC.

    We have some great resources on here for people who are considering surgery, you should definately check out the two following links:

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

    AND

    https://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

    Take care,
    Mark

  9. cindy said

    MY PROBLEM IS THAT MY RECTUM WALLS ARE STIFF AND WONT HOLD POOP SO I HAVE ABOUT A TWO MINIT WINDOW 2 FIND A RESTROOM AND PRAY THERE ARE MORE THAN ONE STALL. SO IM SURE MINE ISNT AS HORRIBLE AS YOU BUT I CAN RELATE 2 THE RESTROOM PHOBIA.I HAVE HAD HEMMOROIDS THAT ALL STARTED MINE HAD SURGERY THEN HAD 2 HAVE A SPHINCTORECTOMY THEN HAD RECTACEAL, THEN A PROLAPSE RECTUM SURGERY NOW THIS HAS ALL BEEN SINCE 94 SO IVE BEEN DEALING WITH THIS WHOLE ISSUE FOR SO LONG IM JUST TIRED OF IT.I APPRECIATE YOU EMAILING ME BACK IM SCARED 2 BUT ALSO NOT TOO. IM JUST WORRIED ILL HAVE TO HAVE THE PERMANENT ONE THEN I WOULD GO INTO A WORSE DEPRESSION DONT WANT THAT.

  10. mark said

    Hi,

    There are so many people out there living happy and healthy with an ostomy. I mean look at Chelsea, just 17 yrs old, sick all her childhood and now she is happy with a perm ileo:

    https://ucstory.wordpress.com/2008/06/07/another-inspirational-story/

    I know of many others who have found great happiness with the ostomy, so try not to fear this possible step too much – if it means your health and freedom back, you’d be suprised by how adaptable humans can be 🙂

    Also, if you ever to go perm ileo there are great sources like Shaz’s group here: http://www.ostomates.org/ you wouldn’t be alone while coping with the lifestyle change.

  11. cindy said

    thaks again 4 answering my mail yall are so positive it helps as i am 48 and they say the younger you are the better 4 you 2 heal so im still unsure did you have 2 take steriods after surgery or b4 it.and do you have 2 take any med 4 life if so what if you dont mind me asking? thanks again cindy

  12. mark said

    Cindy,

    Yes, with any major surgery youth is probably in favor for healing, but 48 is still young 🙂

    Yes, I was on 20mg of pred. before the surgery, I tried to taper off but was too sick. So after the surgery they kept me on the pred for a few weeks and had me do a really slow taper. Now I’m steriod and medicine free. I do take immodium once or twice a day, and I do take metamucil to help me thicken it up. There are others who are 100% medicine free, but for me I need a little help slowing things down and thickening up. Maybe though as my pouch gets older I will be able to stop with my two medicine like treatments.

  13. Ken said

    Thanks for all the time spent on this VERY informative story.
    Ive suffered from UC on and off sense 1993. A very dormant period from 1994-2003. Ive been on predizone of and on for the last 5 years.I am scheduling my 1st surgery in early oct.
    I will DEFINATELY be refering to and using this sight!

  14. Joe said

    You guys are doing the community in whole a huge service and deserve to be commended for this. I received a J-Pouch in 2005, and had I known that there were sites like this, I know I would have been a big contributor.

    For those of you who are about to undergo the surgeries, rest assured that you will have your life back!

  15. Megan said

    Hi Ken,

    Yes, living on/off prednisone is a good signal to consider surgery. I know with Mark it was a big thing to accept b/c he was in the cycle of prednisone, taper, get sick, prednisone, taper, get sick….and so it was easy to think “oh, he isn’t living on pred.” but in reality he was totally pred depedent and still not with any quality of life. You’ll do great with your Oct surgery, just do your best to keep a positive attitude, and be sure to read Carter’s page https://ucstory.wordpress.com/carters-surgery-photos/ His positive attitude about the whole surgery and stuff is really incredible. And keep in mind there are many excellent resources out there for you so be sure to utilize the jpouch community, we are fans of http://www.jpouch.org for anything ostomy/jpouch related.

    Joe,

    Thanks for sharing that you have your life back, it is so important to hear from people with jpouches how they are doing years after the surgery – you sound great!

    Megan

  16. mary said

    hey very interesting story, i don’t even know how i ended up at this site but i’m glad i did. i’m 35 and have had an illiostomey since i was 16 i had a severe case of chrones and am now just coming out of remission and never knew anybody else with a bag. in the early internet days i looked for groups and stuff but there wasn’t alot out there and what i did find was usually people much older than me with different concerns so its nice to find somthing that i can relate to. i have those blockages a few times a year and they suck. its usually my own fault tho. the last time i had one i was pregnant and was craving dried apricots i ate the whole container not my best idea. i usually just do the grape juice thing and curl up in a ball for 24 – 48 hrs while it works it’s self out. i also wanted to mention somthing else i learned while i was pregnant that waist wrap you use i found those bella belly bands are great at keeping your bag flat and from making crincly noises. any way i’d love to become part of the conversation thanks,and take care, mary

  17. midwifemuse said

    Thank you for writing this blog. My son has just had his ileostomy, two days ago, and reading your experiences is a huge help in enabling me to understand what he is going through and what else may be to come.

  18. keith said

    mark,

    im getting an ileostomy done on the 30th of oct. ive had chrones for since i was 14 years old and now im 26. im very active in sports and actually played a little in college. im so in the dark about this??? ive never seen a stoma our ileostomy before but looking at your pics has been so helpful ! im scared nervious and just angry about all this becuse i think its gonna stop me from doin all the things i love to do . all i ever wanted was a family house and a good dog but with all this goin on i dont see this ever happning for me . it would be awsome if you could just let me know how you delt with all this . and from what the docs are saying to me is that mine cant be reversed ?? and ive never herd of the j bag before this web site . thanks for the pics
    – keith

  19. mark said

    Hi Keith,

    You have had a long journey with Chrons Disease (CD) at such a young age. The surgery should help relieve some of your pain. I had Ulcerative Colitis (UC) which is like CD, but UC only affects the large colon and rectum, whereas, CD can affect anything digestive from mouth to anus.

    You’ll want to get more accurate medical info on this and below I’ll give you some links, etc…but as far as I understand CD people don’t often get the jpouch like I have because the jpouch is created from the small intestine that in UC isn’t sick, whereas, with CD the small intesntine may also be sick – therefore, the jpouch wouldn’t work as well for CD. (sorry if that is confusing)

    It is more common for CD people to have a permanent ostomy, and then people like me with UC to have temporary ostomy then jpouch. You’ll want to find the right sources of support for CD and Ostomy, and I recommend the following pages for you:

    1) /www.healingwell.com/community/
    They have an OSTOMY and Chrons forum board, use these for support and find people who are dealing with same thing as you.

    2) http://www.uoaa.org/ United ostomy organization has an active forum for people living with ostomies but it won’t be people with just CD.

    3) On this page you’ll find great links to videos about living with an ostomy that you may want to watch…
    http://www.wrongdiagnosis.com/u/ulcerative_colitis/video.htm Be sure to watch the video on this page titled “Living with an Ostomy” it is a true story of a young woman about your age dealing with the same thing as you.

    To answer your question, I have dealt with all this through seeking, reaching out and asking for support like you are now. I used the online support groups (still do), my friends and family know my story, seen my photos, I just tried to make this best I could by not being embarrassed and doing what I could to help others like me. You know, if you ever need to tell your story, we’d be happy to share it on our blog – you’d be suprised how good it feels to get it off your chest.

    Most importantly, throughout the years I’ve also sought professional therapy to learn how to cope with chronic illness, fear, anger. You’ll need to learn to cope because you’ll have a better life if you can find ways to be positive not negative in this. You will need to find ways to make the best of the sitaution no matter how dark it seems at times – the goal is get your life back and to be healthy and young.

    Keep us posted!
    Mark

  20. Shirley St.John said

    My son has been going thru all these familiar problems for over a year now. He has finally decided his best bet is to go for the surgery. He plans on discussing this with his Doctor at M.G.H. in Boston very soon and hopes to have the surgery done just after the first of the year. He is married with three small children (1- 8 yr. old daughter and twins 5 yrs. old- boy & girl). His wife cannot take any more time off from work, so he has asked me to stay with him to assist him in the hospital and at home, until he is comfortable doing things himself. He is 44 yrs old and is trying to plan this so they have enough money to live on while he is out of work for an extended time. His boss has told him he will help as much as possible, so this will take some of the pressure off. This is a wonderful site for someone like me to know what will be expected of me in helping my son. I have five other children and this son is one of twins. I, myself am about to turn 76 yrs of age in November, so this will be a challenge. I’m saying my prayers that my health holds out in order for me to assist my son as long as possible. Thanks for all your wonderful info on this subject. Sincerely, Shirley

  21. Megan said

    Hi Shirley,

    Your family is being challenged now, but you are all so lucky that you have the ability to support each other through this.

    We planned Mark’s surgery for about 9 months before we did it because we needed it to work with my schedule and his, we had to get our finances settled to have him out of work that long, etc…It was a really difficult time, but between support from family and planning as best we could, we made it through and did well.

    You will definately be invaluable to your son during his recovery. More than the physical help, he’ll just need the emotional support from you and his wife. I know with Mark, his Mom and myself were a huge part of helping him heal. Also, we were so good and supporting each other. You make sure that you and the wife give each other support to get through this. We always said his disease was “our family disease” because it took so many people to support the healing process.

    There are WONDERFUL resources for making this transition. Especially the wonderful http://www.jpouch.org support forum. It will likely be your lifeline through the journey b/c there you can ask and learn all the stuff you need to manuevre the changes. Most importantly, it is crucial to realize you and your family ARE NOT ALONE in the difficulties you face. Use your resources like our site or jpouch.org and get the support needed to go through the journey.

    Take care and feel free to write us if you need anything, our email is mdhilton@gmail.com

    Megan

  22. courtney said

    What a great documentary. I have had UC for 2 years now and I am dealing with flare ups that cannot be controlled unless I use steroids. I have also been on Imuran which is an immunosupressant drug for 2 years. I have started my research into the total colectomy surgery. I am a registered nurse/supervisor, so I have taken care of a lot of colon surgery patients, but when you deal with your self; you feel very uneducated. I appreciate the step-by step journal that you have placed on the internet. I hope that you are doing well, I a just want to say that I commend your strenght and dedication.

  23. Maud Gerritsen said

    Hi Mark,

    Thank you for sharing your experiences via your blog. I’ve had UC for about 6 years now and after the initial courses of steroids, tried Imuran and Infliximab. However after yet another relapse I have now made the decision I am sick of the drugs (particularly the steroids) the moodiness and the moonface!
    So I’m counting down until 19 January when part one of my surgery process will happen.
    Fingers crossed it will all go well, your story and pictures have made me a lot less afraid (as the unknown is half the battle).
    So thank you very much.

    Maud

  24. Hi there!

    I’m new to this forum and just wanted to say hi. So Hi!

    bye!

  25. Michele said

    Thank you so much for sharing Mark’s experience. I am 29 and having surgery in one month for a permanent ileostomy for UC. This is more information than I could have hoped for. 🙂

  26. john said

    Hi, ive had my jpouch connected now for six mounths and am living a nightmare, I am in the toilet up to twenty five times a day,ive been hospitalised for a week to clear up an infection but has made very little differance..ive tried all the different diets but nothing works.. when i had my bag i enjoyed a normal life, i could eat whatever i liked and was fully active where as now i cant even leave my house. what i would like to know is, is there anybody out there who has gone back to the bag after the jpouch failed and is there any problems with doing that…please respond as i dont know what to do..

  27. Tony said

    Thanks for sharing your experience. It has helped settle my mind a great deal.
    I am due to go into surgery for an ileostomy tomorrow after a long and difficult argument with UC.
    Thanks again & I hope you remain well.

  28. KDelphi said

    I am considering giving up my almost decade old j pouch for a permanent ileostomy and cannot seem to find anyone who has had the arthritis and thyroid problema I am having —with the surgeon just saying he “dopesnt know” if removing the j pouch would clear them up! I never had those problems before and did not have UC ot CD—I had a botched hemorrhoidectomy that destroyed my sphincter muscles…I am female..can anyone tell me anything, please?? Thank you so much for any replies…its not the ilestomy (although, I am on medicaid and do worry about paying for supplies) as much as going through another major surgery and still having the pain and problems…THNX.

  29. jason hereford said

    How do I get To Mark’s origional story…not on this site.

  30. Lacey said

    I do not have UC, I was born with VATER syndrome. I’ve had over 180 surgeries, all dealing with the birth defect. I was given a colostomy at birth. I had it reversed when I was two. This past February I had to have another colostomy. I’ve consistently had problems with my colon simply not working, thus I become impacted and am forced to stay in bed in severe pain daily. My doctors decided to remove a portion of my colon to try and relieve the problem. However, it has not worked either. I’ve had absolutely no output since the surgery over two weeks ago. My surgeon, both of my GI doctors and my urologist have met and discussed my situation. The final decision has been made to remove the entire colon, and I will now have an Ileostomy. Since they are removing the entire colon, this will never be reversed. Psychologically, I have had a very hard time coming to terms with such a permanent change.
    After doing much research, speaking with doctors and nurses who I’ve known all of my life, and countless conversations with my family and closest friends I am now looking forward to it. For the first time in my life I will go days with no pain. I’m already used to the care needed for the colostomy, and from what I understand that aspect is no different with an ileostomy (except the stoma itself will be much smaller than what I have now.) I stumbled upon your photograph of your stoma doing a google image search and it led me to your blog. I really believe I was meant to find it because your story and the documentation have really encouraged me. I am now going to start a blog and join some support groups.
    Surgery is in two days! Wish me luck.
    Thanks,
    Lacey

  31. Robert Stansbury said

    Hi there, Anyone who is suffering with U/C or crohns and is considering an ostomy then take my advice, dont worry, I suffered for over 30yrs U/C. on Pred steriods practically all the time, in fact in the end i became a steriod induced diabetic. Then the surgeon said its about time we removed the colon, of course I was afraid but realised i had suffered so much, every time I went out i was looking for the nearest toilet etc:. So I had a full collectomy 6yrs ago. I had a ileostomy bag for six months, then had j-pouch constructed. I would just like to say the six mths with ileostomy was the best six mths I had for years. The first year with j-pouch was brilliant once i had recovered from the op, it was a very invasive operation and took a lot of getting over, the last 4 yrs i have had pouchitis on and off, very simular to U/C, if I had known more about this then I would have stayed with the ostomy, plaese dont worry ostomy is not as bad as you may think. All the best anyone who is having the operation and dont worry.

  32. Monica Hartz said

    I wanted to thank you for posting these pictures. They eased my mind. My husband has uc and was just told yesterday he needed surgery. We were devastated…If you still check this site I would be interested in getting some more information about your experience past and present…We are very scared…

  33. S. Wilson said

    Thank you for sharing so openly your experience. What an informative post. I am sure that this will greatly help many who face this same procedure and life change. Thank you again. I will share this with the young ladies in my life who are facing this same thing.
    Continue to excel in life you are an inspiration to all.

  34. Jim Conway said

    Mark& Megan,
    Thanks for all the documentation and feelings through your journey.I had a permanent iliostomy six months ago.I can relate to just about everything you spoke of.I am called a crumudgen,by my girls,on the day I change my bag.It bothers me to no end that I have to do this twice a week for the rest of my life.However I am very greatful I have a rest of my life.To all the crumudgens out there.Enjoy!!!! Again tanks for all your input and support.God bless you on your ongoing journey.Have a good one…I DO!!!

  35. jimmy said

    MCdsy6 http://chfEd38MkKsw7cXv0x3Dlc3b7.com

  36. zen said

    I’m going for my certification in ostomy nursing and stumbled on your website when I was looking for IPAA, J-pouch for short. You’ve helped me a lot and so did the other “ileostomates”. Good luck and take care.

  37. Donald A. said

    I was diagnosed with crohns disease when I was sixteen. I am
    now 65 years old. At the age of 21 my colon and bowels were removed because of obstructions, bleeding, cramps, diarrhea,and
    other complications. My health improved dramatically after
    recovering from the surgery. I completed my degree in education
    the next year. Wearing a pouch all my adult life was worth the
    improvement in my health. As I was teaching I got a Masters Degree in education and completed a 37 year career in education. The main problem I have had was three abscesses over the years that required surgery and new ostomies. Looking back I have not
    regrets having the surgery. The difference was a largely healthy
    life instead of a life as an invalid.

  38. phiphi04 said

    i have to say that ive suffered for many years with this and find the information here fantastic, great to know im not alone out there, thank you.

  39. I am constantly signing in and out of my college website and it is rather annoying to always have to type in my user id. It used to be saved, but then I updated Firefox and it won’t save.. . If anyone could explain to make Firefox remember that would be great. Thanks..

  40. Chris said

    Mark (and/or Megan)

    Thanks, I have just recently myself had a colostomy and have been looking for other 20 year-olds in the same boat. I am actually trying to get a group of young adults (18 to 35), to help with a project I am working on. If you get me your email, I’ll send you more information and maybe we can see if we can help each other out in any way.

    If anybody else meets the age criteria and is looking to raise awareness about people with ostomies, help others facing possible ostomies, and have fun in the process drop me a line and some back-ground information at proudofmybag@gmail.com

    Thanks,
    Chris

  41. Cory said

    I recently was discovered i had sever Crohns Disease, and in result of the disease, part of my rectum, all of my colon, and most of my small intestine was removed, I now have to wear a one-piece drainable pouch, this is new to me and its been very hard for me and my family to get use to it. Main thing that is the hardest for me is knowing i have to live with this for the rest of my life. I really enjoy websites like this, knowing that im not the only one going through this. I know things will get better for me in time. But it is hard. My name is Cory and because i weighed 300 pounds at the time of my procedure there was complication like when they tried to make the stoma by attaching my small intestine to the surface the small intestine kept dying on them resulting in pulling more and more out. I have to go back in for another operation here in a month once my surgery area heals, because they want to fix my stoma, In a course of 4 months I have lost 70 pounds and now weigh 230 pounds to this date. Its not a easy journey but I’m just lucky i have my mother and sister by side. Glad to read other peoples stories and thought i would share mine

    Thanks,
    Cory

  42. These pictures are very helpful and this entire post should help rid people of their uneasieness concerning this disease.

  43. Mark J said

    In 2004, I was 39 years of age and was hospitalized and diagnosed with Ulcerative Colitis, PSC Liver disease and type 2 diabetes…. all in the same week! The UC has become insane within the last year and I have been hospitalized in intensive care, and had 3 colon exams. I am now going to be turning 48 and this past year I have been on/off 40mg daily of prednisone, 300mg daily of immuran, MONTHLY double doses of remicade ivs, 1500mg daily of colozal, a handful of other daily medications (58 pills a day) and nothing is changing for the better. I can honestly say with all sincerity I never thought at 47 years of age that I would be so tired!

    I am getting ready to undergo removal of my colon on June 22, 2012 and am not looking forward to the procedure at all. I am hoping to be able to have a jpouch but need to lose 70 lbs by December for that surgery to take place. My cancer risks are 50-50 right now and recent post colon exam slides show unusual patterns with the colon and way too many polyps to remove (increased cancer risk again). I hope I can lose the weight and get through this surgery (it just looks so complex and intense). I have a great support network with my partner and family (mom, dad, sisters) but I keep telling everyone they are not the one going through this. This site and the photos and narratives have been very helpful and have answered a lot of my questions. I hope I can handle this, lose the weight, and have the other surgeries …. I just can not imagine myself having a permanent bag. THANK YOU FOR THIS SITE

  44. Tony said

    I lost about 50lbs after my 1st surgery without even trying. I think it was not taking all the steroids. The surgery itself was not as bad as I expected, just give yourself plenty of time to get over it.
    As for the bag on the side… I wish I’d done it years ago! I feel so much better now, not tired, not feeling continually unwell, no meds, no worrying where the nearest toilet is. The benefits far outweigh the very few minor drawbacks.
    Just take it easy after surgery & don’t do too much too soon.
    Good luck

  45. Mark J said

    Two weeks out of 1st surgery (06-22-2012) and my recovery has been going great. The staples are tightening so I know the healing has been going well too. They should be coming out on 07-10-2012. The medical team at Univeristy of Chicago Medical Center has been fantastic as have been the ostemy nurses and home healthcare nurses. Changing the appliance every three days is essential as it starts to breakdown and I am used to emptying it every couple off hours to keep it clean and not so heavy. Major medication changes have ocurrred and I stopped having to take 17 of about 63 different pills… mainly for the accompanying PSC liver disease. I have been experiencing some dehydration and have found I get exccessive heartburn drinking juices (I think it is due to the high acid level). I can sleep on the drop of a dime at anytime and I thought that would be better but it is not as of yet. I take lots of naps. I still can not believe the amount of time I no longer have to spend in the bathroom… its almost like I have gained an extra 2 to 3 hours a day or a whole day each week in time!! I hope I will be able to drink soda soon, water, juice and iced tea is getting old.

  46. Angie said

    My best friend was diagnosed with cancer last year and after radiation, she has been feeling better. Now, unfortunately, they have told her she will have to get her colon removed (I am still unsure of why). It’s a huge and devastating change for us because I know we have been working so hard at keeping our hopes up and being optimistic together. The hope and optimism will never stop, but I have not been able to find an answer to my question.

    It has been tough to have a sexual relationship, but now, how will having a stoma be different. I know she will still be loved, but can you control the bowel movements? can you remove the bag and put a patch on it or must the bag be on during intercourse? My best friend is a very tough cookie, but I know this could be one of the hardest things to get use to and start to re-love her body.

    • Mark J said

      Just had mine removed and have yet to approach the intimacy issue… its difficult to think about it with a bag hanging from you and some joint and body pains that occur irregularly. I never know what is going to hurt next at times, almost feel like I am 70+ vs 47 at times; I hope others can give some great advise. I am intersted myself.

  47. jayce said

    I was really glad to see you and the pictures it took some of my outlandish thoughts of what a colostomy bag was. I am still a long way off or even not close to having this procedure, I just needed to know for my worst case senario. Though not an appealing thing my fears and my expectations are relieved. If I do get the procedure I only hope I am half as brave as you are

  48. Lisa said

    I’m a first semester nursing student and our class has been learning the basics of ostomies. I felt like what we were learning in class was too general (apparently, I can’t accept that I’m just in my FIRST semester – lol) and quickly came upon your site. Very helpful! My goal is to not only be able to take care of my ostomy patients, but try my best to help them cope with the huge life change, even though I’m not going through it myself.

    I’m glad to hear that people can feel like an ostomy makes their life happier than before it. Information like that would definitely change the perspective of someone who is getting ready to go through the process and is experiencing anxiety about it.

  49. becca said

    My husband was officially diagnosed with UC in January of this year. He has been suffering from it for about 4 years, though, we just didn’t know what the problem was. since diagnosis, they have tried several drug therapies to bring down his inflammation, but has had no relief. imuran-nope, remicade-nope, some other things i cant remember….several bouts with prednisone. absolutely not better. so, finally we have his colectomy scheduled, with plans to do a 3-step set of surgeries to a j-pouch. your post has been tremendously helpful to me, as his wife, to know what to expect. in looking at the first several photos, i could guess that mark had suffered from uc, because his body looks so much like my husbands does today. We are so thankful for this option..for him to be so much better off than life with UC has been. I want my husband to get his LIFE back. he hasn’t worked in a full year for lack of ability to stay away from the restroom to be able to get to work on time and things. its so hard to be open about this in social settings. thank you for your openness.

  50. dog lover said

    that cover is really cool i think i should get the same thing i had that cancer at age 10.

  51. Heather mac said

    I’m a nursing student in Portland, Oregon and we have an assignment to wear a bag (with a mixture of our own making) for 24 hours so we can know what it’s like. I came across your blog when I was looking for pictures to know exact placement. Your smiling face immediately was reassuring. I will cite your blog in my write up. Hope you are well and still active! Thank you so much for sharing your story!

  52. black teas said

    I rarely leave a response, however i did some searching and wound up here Photos 2: Ileostomy UC to J-Pouch Story.
    And I actually do have a few questions for you if you usually do not mind.

    Could it be just me or does it look like some of these responses appear like coming from
    brain dead visitors? 😛 And, if you are posting at additional sites, I’d like to keep up with everything new you have to post. Would you make a list of all of your public pages like your Facebook page, twitter feed, or linkedin profile?

  53. Andrew said

    Thank you for the most excellent read and share of Mark.
    I am in stage 1 of 3. Very happy for the choice and just 18 days out of surgery.
    My UC hit me just this year back in March where i was diagnosed with c diff and spent 9 days in the hospital. On 9/11 I checked into Mayo Clinic and could barely move or see. 7 days later they removed my colon.

    I feel great, however I do have moments where I just need to lay down and rest.
    Thank you again for Mark’s story!

  54. May I use some of the photos and text for a blog – it would benefit my colon hydrotherapy clients. Thank you SO much for having the courage to post and help others!

  55. Liz said

    Dear Mark and Megan. it’s been really helpful reading your ‘story’. My son was diagnosed with UC in March of this year, but hasn’t responded to any of the treatments and is scheduled for surgery tomorrow. I’ve sent him your link as I think it will really help him face up to what’s going to happen and see that there is light at the end of the tunnel. I hope your health has continued to improve Mark.

  56. hollie said

    Hello there, The chap in this picture.. Are you still alive?

  57. Jonathan Rix said

    I have UC and have been Battling it for about 6 years. I am going for a consult for the colectomy. I stumbled on this last night. I am very thankful that you posted this in great detail. brilliant. Now I know what to expect. Thank you so much. I will be posting my progress too. Very inspiring.

    • Liz said

      Hi Jonathan. My son had a total colectomy back in November and I found Mark’s blog so helpful. (I couldn’t get my son to read it, his surgery was an ’emergency’ and he was in denial a bit) Good luck for your surgery, you may be interested to know that my son is scheduled for take-down in a few weeks, so hold onto that thought 🙂

  58. Caitlin said

    i am a 3yr colon cancer surviver and I have an ileostomy bag do the belts that you wear work??

    • Caitlin said

      o and I am only 12

      • Liz said

        Hi Caitlin. Bearing in mind that everyone is different, I suggest you give it a go, try it at home first to give you some confidence. My son has been using his belt since he had his colectomy on November and has found it great, he’s goes to the gym about 10 times a week and uses it when he goes out to meet his friends, and you wouldn’t know it was there. He wheres one of those ‘skins’ type of t-shirts under his regular shirts which also helps disguise it. Good luck

  59. Caitlin said

    the belts really do work I can go out with my friends and I have confidents that they wont find out 🙂

  60. I am in fact happy to read this web site posts which carries lots of valuable facts, thanks for providing
    these kinds of statistics.

  61. My 89 year old father just had an ilo. How long will it take him to feel better? Before all this he was very active and heathy. I’ve never seen him like this and he maybe getting depressed. Before surgery he walked 45 min a day, did 20 military pushups and rode his Exercycle 35 min and climbed stairs stairs with my mom. They do this every day, in the morning. It’s 4 days later and he can barely stand.

    He was diagnosed with colon cancer 1 mos. ago. It metastasized to his liver and spleen. The tumor in his colon caused blockeged. That’s why the did a ilostopy. It’s so frightening looking. He hasn’t even seen it yet.

    I’m so sad for my father. Went from a healthy active senior to depressed frail helpless old man. He is scared to look at it.

    How can I best help him?

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