UC to J-Pouch Story

Mark 9 month Jpouch Update

Posted by mark on August 8, 2008

9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry.  Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again. 

BMs in 24 hour:  Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go.   I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same.  Here is my BM schedule for those of you interested: 

2 BMs when I get up and start my day  (don’t eat breakfast)

1 BM after eat Lunch

1 BM before dinner

2 BMs after dinner before bedtime

1 time in the middle of night between 3-4 am

Gas:  Simply put, I am pretty gassy.  My gas may be from metamucil or what I’ve eaten.  I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine. 

BM noise in the bathroom:   Sometimes it is quiet but sometimes it does sound pretty splatter like. 

Weight Gain & Body Changes:  My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo https://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay ) Megan likes to tease me about my “middle-age bulge” – she thinks its funny.

Sexuality:  I have some again, thank goodness!  UC days it seemed sex wasn’t a huge interest.  Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well.  And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days. 

Medicines:  2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time.  What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn.  Therefore, the goal for me is to keep the BMs more solid.  The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.

Drinking Alcohol:  The big question asked is can drink with my jpouch?  And the answer is YES, I do.  Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer.   Red wine and thats been fine.  Crown Royal and Coke doesn’t bother me either.  Other than that I haven’t tried many drinks.  Also, I don’t tend to drink so much that I’m drunk, just more causal.

Hemorrhoids:  Mild

Butt burn:  Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker. 

I LOVE MY J-POUCH – I HAVE ZERO REGRETS!  Mark

 

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53 Responses to “Mark 9 month Jpouch Update”

  1. Brenda said

    Mark,

    Do you find yourself more hungry now, with the J-Pouch, than before? (I’m worried about excessive weight gain that I read about on J-pouch.org). What is your appetite like now?

    Do you find, looking at yourself, that you look any different post j-pouch surgery than before? Your surgeon looks like he did a great job.

    Is it safe to take Imodium every day?

    I’ve also heard that rice is good to help with consistency and to avoid blockage. You probably know that though. 🙂

  2. mark said

    Good question, I meant to cover this in my update. I’m not sure if I’m more hungry than before, but unlike when I had UC, I want to eat now and now I eat when I’m hungry. So, I think I actually eat like a normal healthy person, and not that I eat more because I have a jpouch.

    Yes, as far as I understand from my doctors it is safe to Imodium every day. Of course, you’ll want to talk with your drs. about their thougths on if it is safe or not for you. Here is a great post about how stuff like imodium works in our body, pay close attention to the multiple posts by Jan Dollar, she explains it pretty well.

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

    Yes, my stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo https://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay 🙂 Megan likes to tease me about my “middle-age bulge” – she thinks its funny.

    Mark

  3. Kyel said

    Hey man,

    It’s pretty inspiring to see someone around my age (20) that has had success with the J-pouch, I have been reading on the J-pouch site of all the problems and making me kind of depressed lol. I am suppose have my 2nd surgery at the end of the month to reform the bowel into a J-shape. Then 3 months from that date actually get the J-pouch. You seem to have done pretty well since then and I am very happy for you. So will you have to take immodium/metamucil for the rest of your life or is that still temporary? Just curious as to what your doctor said about the future? I know everyones different, and I am hoping I don’t have problems but I WILL be prepared hah.

    Thanks in advance man,

    Kyel

  4. Eric Mills said

    hi there,
    Writing from the hospital after step 2 of 3: I had toxic mega colon. Just wanted to agree with previous commentor’s feelings. Keep it positive; everyone’s different. I feel great, have to wait 6 weeks for pouch to heal and then it’s reanastamosis time. (sp?).

  5. mark said

    Hi Kyel,

    Good to hear from you, sounds like you’ve still got some surgeries and healing ahead? You know, I don’t know if I’ll take the metamucil and imodium forever. I know there are people who live completely free of taking anything, and others like me who do need some help getting better results. My doctors have said long term use of both products is fine. As for now they have just become part of my routine, almost like taking a vitamin or something. For me it seems a small price for being able to live as normally as I do now. I’ll keep trying to get off of them, I’ll try again at a year anniversary of using the jpouch. I’ve heard that takes the pouch about a year to get settled.

    Did you have UC? How are you living now with the ostomy?
    Mark

  6. mark said

    Eric,

    Good to hear from you. HOw is the recovery going? 6 weeks isn’t too long inbetween your surgeries, and that last surgery shouldn’t have a super long recovery and hopefully you’ll be back to full speed quickly.

    Are there other physical repercussions from Toxic Megacolon? What is T. Megacolon – I know but I don’t really know.

  7. Karen said

    Hi Mark,

    I just saw your comment on my blog and wanted to thank you for taking the time to comment and for linking your site to Healthtalk. I had stumbled across your site a while ago, and loved how informative it was and the pictures. I know if I have to have surgery again (fingers crossed that I won’t!) that this will be one of the first places I come so that I know what to expect.

    I’m glad everything seems to be going well for you now!
    Karen

  8. JM said

    Kyel, Mark,
    I’m one of those lucky people who have no need of meds or fibre supplements any more. If it’s any use to you I took psyllium husk (we don’t get Metamucil this side of the pond) for about the first 18 months. I simply found quite gradually that I needed it less and less and eventually cut it out altogether, hopefully you will find the same happens to you as your pouch expands and adapts over the first couple of years. I’ve never had any need of loperamide so can’t offer much there.

  9. Megan said

    Hi Karen,

    Mark and I agree that the Colitis resources, webcasts and blogs are some of the BEST resources available. I wish everyone with UC knew about Health Talk: Colitis. And the quality of the webcasts are incredible – we are always raving about it on our blog. I think one of the best recent webcasts was about when to make the “elective” surgery decision and a surgeon talked about the complexity of the decision – really excellent information – here was our post on the webcast https://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

    And for other readers do check out Karen’s blog and other resources on http://www2.healthtalk.com/go/colitis

    Take care!
    Megan

  10. bellyluv0sofine said

    Megan,

    I don’t even know if I can adequately express how enormously helpful you and Mark’s blog was for me. Then I was able to connect with Brenda and Lottie who offered so much support. God! I just can’t imagine having going through this with all of you. I am so grateful. Thanks for the Health Talk link. I will check it out. Now I am looking forward to my pull down surgery on October 20. I am anxious about what that will bring for me.
    Carmen

  11. bellyluv0sofine said

    oops! I meant to say ” just can’t imagine having going through this with OUT all of you.”
    ~D

  12. Megan said

    Carmen,

    Sounds like your recovery is going really well! That is great to hear 🙂 We are so glad that the blog and other contacts you’ve made were helpful – that is what we had wanted to provide for others. It was great timing that you, Brenda and Lottie all found each other – such a great support system.

    I’m sure your takedown will be great, Mark recovered so quickly from that and has been so good with his jpouch, you’ll soon forget you ever had UC.

    Megan

  13. Lisa said

    Mark,

    Thanx for all your pics and commtents it really is helpful to see what you have gone through.
    I had my 1st procedure 1 month ago so i now have the ileo.
    I was diagnosted with cavernous hemangioma of the rectum which is extremly rare.
    Im only 28 so hopefully i can put this all behind me and live a normal life.
    I will have the takedown in mid october.

    i was wondering if there was any special foods you ate when you had the ileo, i’m getting sick of eating the same things.

    Best wishes,
    Lisa

  14. mark said

    Hi Lisa,

    You should definately have a normal life now, not being sick is HUGE, just be sure to keep your atitude positive, that is the best thing for getting back to a good way. As for foods, I ate whatever I wanted with the ileo after week 4. I am not very good about following tight rules for food – my advice to you would be to introduce 1 new food slowly that you like and if that works, then try something else.

    On http://www.j-pouch.org/diet.html this is a link to diet suggestions you may want to check there. And also at the http://www.jpouch.org there is a forum section for Ostomy & Skin and you could also seek advice there if you are having concerns.

    Overall, as long as your stoma is still pooping, then keep eating, FEED THE STOMA 🙂

    Mark

  15. Ken said

    Hello, Mark
    I have a couple questions.
    First THANKS for the blog, VERY infomative,cool and positive.
    Next… How active were you with the “Stoma” bag.
    Im a singer in a bar band…(just for fun).Maybe wanna bowl or something.Just was wondering what and what not they told you to do.I know everyones different,just looking for some first hand examples.

    Thanks!
    Ken

  16. mark said

    Hey Ken,

    Oh yeah, I was active with the ostomy (stoma bag). It took me about 5 weeks after the first surgery to feel fit again, that first surgery took some downtime physcially to recover. I was approved to lift heavy things and such after 6 weeks. You will be able to social and out after probably 4-6 weeks, and signing and such should happen around the same time. I found my life with the ostomy was really normal, it was great and I didn’t have any limitations. Plus, taken care of it, emptying it and such is easy to do and doesn’t require much change to your life and definately doesn’t get in the way of being active. In fact, if you have UC you’ll be suprised by how much better the ostomy life is than having UC – then the jpouch is just icing the cake.

    Good luck and heal well, be sure to keep your attitude positive that will make this process “active” and successful for you.
    Mark

  17. Ken said

    Thanks again Mark, I cannot tell you how helpfull this site/page has been.I have scheduled my 1st surgery for Oct 8th.
    My wife and I are expecting our first child(a boy) in late January. I decided I cant be worried about CRAPPING my pants with a child depending on me(LOL)
    Im hoping for the best…and trying not to even think (but willing to prepare) for the worst.
    Ill keep the site informed of my progress, as EVERYONES comments and posts have been VERY helpfull for me. Just hoping I can “Share the love”

    HOLLA !!!
    Ken

  18. mark said

    Hi Ken,

    Wow. new baby, surgery, you’ll have a crazy few months. But that is good because all the changes in your life are positive changes. You should feel a lot better after you have the surgery and can be healthy with the new baby. We look forward to hearing your story, and sharing the love…every story helps.

    Mark

  19. Jewels said

    Wow Mark, Your story is inspiring!! My husband just had his 3rd surgery, the pull down. We are constantly checking out what you and Megan have to say. It’s so great to see how well you’re doing. Hopefully my husband will be there soon!!

  20. mark said

    Jewels,

    Great to hear from you and thanks for the kind words. Glad that your husband has had his takedown, how has he been adjusting to his jpouch? I will continue to post updates on mine but hopefully I wont’ have much to report other than doing well 🙂

    Mark

  21. Michael said

    Mark,
    I wanted to take a few minutes to say thanks for this site. I have been trying to read up on this surgery and this was a God send. I am 33 and was diagnosed with colon cancer in June. The chemo and radiation were awful and now I have to look forward to this. I am glad to have a better understanding of what to expect. I hope you don’t mind if I reach out to you again in case I have more questions? My main concern now is how quickly I will be able to work out etc. That is my hobby and stress relief from the office. Should I safely assume about 6 weeks before I can do anything active like going to the gym?

  22. Eric said

    Hi Michael,
    6 weeks is the time after which your tissue, under a microscope, has completely healed to its former state (think internal goodness) and the time the Doctors say you can lift more than 10 lbs. I wouldn’t go straight to the gym on the 42nd day of recovery; instead, try some very light weights while watching TV or start with a few minutes on a stationary bike. You’ll see that even though you’re after the 6 week mark, you’ll still have some healing to do.

    –Eric
    May 2008 Emergency Surgery for Toxic Megacolon
    August 2008 Jpouch created (with a complication that led to a 2nd emergency surgery)
    Nov 2008 what I like to call “hooking back up the plumbing”

  23. mark said

    Hi Michael,

    Yes, Eric stated it pretty clear. I was told at the 6 week mark my surgeon would approve me to lift more than 10pounds. Assuming your recovery goes as planned you should think about 6 wks. Although, like Eric I wasn’t ready yet at 6 wks to lift huge amounts so be patient and listen to your body.

    Mark

  24. Davus said

    Hey Mark,

    Congrats on your stellar recovery – everything seems to be going great for you. I had severe UC myself from 2002-2006 until I got extremely ill and then I got an ostomy. Smartest decision of my life. I went from a very sick 130 lbs to 200 lbs (and most of that is muscle from working out haha) and I feel amazing. Still have the ostomy, but I’m getting the J-Pouch surgery in a week. A question – how long did it take for you to be able to do “athletic” things, i.e. things where your abs are under considerable stress? I’m looking forward to this year’s ski season but I figure I’ll miss a good portion of it due to recovery…

  25. mark said

    Hi Davus,

    Glad to hear you are recovering so well and feeling amazing – isn’t it great to not be sick.

    Well considering I’m a contractor and do a lot of manual labor myself that is a good question. My surgeon wanted me to wait 4 weeks after takedown before lifting 10pounds or more. At three weeks in the photos on the below page, I’m stacking wood. I felt fine, but probably could have used another week before I did anything too body oriented.

    https://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/

    Overall I was ready to go at 3-4 weeks but would tire easily, but around wk 10 I was feeling excellent, not feeling tired and that stuff.

    Keep us posted and send in a picture of yourself skiing when you hit the mountain!

    Mark

  26. Shellee said

    Hi Mark,

    I just wanted to thank you. My son, who will be 24 this month, had his first surgery in March of 2008 and his take-down in June. We followed your progress as you had documented in the photos and it gave us the hope that we needed to get through. I can’t begin to tell you what a huge thing you have done by sharing your story. Knowing that others have gone through what you are facing, makes all the difference in the world. You have done a great job with this website. Thank-you so much again. My son, Nick has his life back and is doing very, very well too.

    Shellee

  27. Becky said

    Mark and Megan,
    I can’t tell you how much I find peace and hope in reading your post. My husband will be having his having his first surgery at the end of this month and the take down in June. I actually banned myself from reading blogs about J-Pouch surgery because so many were negative… and I was getting depressed. I am glad I broke my own rule and found the two of you. I have been a bag of nerves and can’t wait for this to be over. I do have a question for you, Mark… I am trying to prepare for my hubby to need emotional support, but don’t want to overwhelm him or make him feel isolated. What things can I do (small or big) to make the first two weeks at home easier on him? Did you want to be alone? Sit in a recliner? Sleep by yourself (I am afraid of bumping him), did you want company? Ok, so I lied… I have a million questions! 🙂

    Thank you for sharing something SOOO personal and giving me hope!

    Becky

  28. mark said

    Hi Becky,

    So glad that the site was able to ease some of those nerves. I think that was a huge reason we made the blog, see, Megan is a visual person and it was driving her nuts before my surgery not knowing what things were going to look like – so she documented it all.

    About the emotional support for your husband, I think the big thing is that he needs to be willing to accept your support 100%. Instead of the attitude of “you don’t understand because you aren’t the sick one” he needs to let you in completely. The big thing for me was how much Megan normalized my rather abnormal situation. She did a wonderful job of educating herself and then me on things like the stoma, bags, etc…So by the time the stoma arrived Megan actually knew more than I did in a sense. That type of stuff made it easy for her to be involved in my early ostomy bag changes and such. For us there wasn’t anything about my recovery that she wasn’t in the know about. This made it easier for me to just figure things otu with her help, and ultimately, it brought us really close.

    For me I was lucky because I didn’t have any surgery related complications so when I got home I feeling pretty good, and I wanted company from Megan. I was hungry and wanted comfort food. Meg did sleep in the other room the first few nights b/c I was sleeping mainly on back, but I really liked her company. She helped with my first bag change outs. Right after we got home Megan was actually more tired than me, she slept two full days practically. Make sure your husband understands that he isn’t the only one recovering. You’ve been living with UC too and you are just as involved in this surgery as he is. As much support that you give him, he needs to give back to you.

    Please let us know how things are going and contact us with anything.

    Mark

  29. Megan said

    Hi Becky,

    Welcome to the world of the colonless men in our lives 🙂 First, your husband is so fortunate to have you in his life, you sound so loving and understanding!

    I’ve said this before on the blog but in our family Mark’s disease became so dominant thatafter a while it became the family disease not Mark’s disease. I think as long as your husband knows that this surgery is about your family as much as it is about his health, he’ll heal well. He needs to be willing to accept your support, but he also has to give you support in return, this is just as huge and scary for you as it is for him.

    During Mark’s jpouch recovery I wrote during this time this little rant, but now the words really showcase what I was experiencing, and how important the emotional recovery is for both you and your husband at this time:

    https://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/

    “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.”

    Stay in touch, Becky!
    Megan

  30. Becky said

    Mark and Megan,
    Thank you so much for responding (and quickly!!!). I am really not good at letting things out of my control and this disease has certainly tested me! We have a 2 1/2 year old son and I know that my husband wants so badly to move forward and focus on our family. We are at almost a week and counting and I am getting excited (sounds strange, I know). He is having surgery @ Mayo… can I ask where you, Mark, had yours done?

    Jake and I are both teachers and I know he is anxious to get back to work quickly after surgery(he loves his job), I know that every person is so different, but when Mark did you feel like you could be back at work if you didn’t have to do any heavy lifting? He can a lot of the day if he needs to, he works one on one with students that are struggling.

    Ok.. my last question of this batch, where did you get your ostomy supplies? I need to check on all of that with our insurance company and don’t even know where to begin. Does the doctor write a prescription?

    Thank you again (a million times over) for this blog. I appreciate even more that you are willing to answer questions.

    Thank you, thank you…

    Becky

  31. Megan said

    Hi Becky,

    We were both excited too before his surgery b/c it meant the possibility of a healthy future. Your husband should expect to have a good life ahead and get back to living instead of living sick. Just keep your feet grounded that for many people the first year after surgeries can have ups and downs adjusting, so realism in the outcome is helpful.

    Ostomy supplies were bought from a local medical supply store – we just paid out of pocket and then the store would bill the insurance company. It was pretty easy to get the supplies and you won’t need many if he only has the temp ileo.

    Don’t buy any ostomy stuff before the surgery b/c the nurses will figure out after surgery what appliance will be best for his stoma, body, etc…
    Also, on http://www.jpouch.org you can ask around for further ostomy advice as need (or use uoaa forum).

    I’ll answer for Mark and work since he is super busy right now managing our move – after the 1st surgery he was back to office work around wk 4-6ish. He was still uncomfortable and would tire after half day, but was totally working around wk 11ish. After surgery 2 he was up and working full steam around wk 3. Now keep in mind, Mark had a flawless recovery with no complications.

    Is your husband increases his cardio and protein intake to help speed that recovery?

    Megan

  32. tower 200 said

    How swiftly can I see muscle definition?

  33. Kevin said

    I see this site is a couple of years old now — but wanted to add my sincere thanks; your pictures and blog mean that for the first time I feel like I can ‘get my head around’ what I face.

    Many thanks!

  34. robyn said

    Hi Mark,
    I’ve just come across this site and read your story, it has been such a big help…I’m 21 from England, I had my first ever uc flair up in sept 09…I went on every medication..and was in hospital until nov when they told me I had severe acute uc and needed the stoma op…so I had a really rough time with it..left hospital mid december at the weight of 5stone…and at 5ft 8 that isn’t good…I see my surgeon next week and he will tell me and book me in for jpouch…I wasn’t going to go for it because I feel so good and healthy..but after reading your story I’m deffo going for it now…I’m just so scared of loosing that much weight again! Did you loose much…also I know my surgery will be in two parts..but I don’t know if I will have to stay in hosp for that period of time…
    Robyn (21 year old hairdresser from England) x

    • Danny said

      Hi Mark Megan & Robyn!

      Mark & Megan, thanks so much for your site, just read it and im going for my second surgery in 2 and a half weeks time and although ive always been very confident and positive its good to hear such a positive story.

      Robyn,

      I too never had any previous history but suddenly had a bout of severe u/c. It started in Sept 09 and by 29th sept i was in hospital having medication to try to recify my u/c. I never felt, or was, sick but had all the other symptoms. After 1 week of trying the specialist advised that the operation to remove my large bowel was necesary due to the severity of the ulceration. I had my surgery on 6th October and was released on 12th. My starting weight was 11st 2pounds, i left hospital at 9st 2pounds, so i know what its like to lose the weight and have the shock of looking in the mirror for the first time. I have regained all of my original weight and am now looking forward to the second operation to start the reversal process. I will keep you updated as to my progress after i come out from the second operation, until then keep positive:-)

  35. Danny said

    8 Weeks after my second surgery and I feel good! ive had no problems with blockages and im eating most things (apart from Mushrooms) and all seems to be going down fine. Ive now had my scan to check that the pouch has healed and all is ok so the final surgery is now being booked. I have no regrets in going for the surgery and im now looking forward to life without a stoma bag:) The only slight problem I had was after about 8 days when I had v bad bum burn, but creams and time sorted that problem out and all was fine:)

  36. Jennifer said

    If I could go back again when they gave me a stoma, I would have rather of died!!!! It has been the worst two years of my life. I can no longer swim, I have trouble exercising due to the bag leaking, and I am the butt end of everybody’s jokes!!! I am not a teenager, I am 29 for goodness sake!

    • Mary Margaret said

      Hey Jennifer,

      I’m not sure if you still have the ostomy or not, but I saw your comment and I wanted to share with you this website. If the link doesn’t work, just google Ostomysecrets. A small group of people with Crohn’s and UC started an undergarment company designed to support and hide ostomy bags so that people can return to their pre-ostomy activities without worrying about leaks and bulges. The garment line has really expanded and now they have casual and sexy panties and they make wraps that support the bag and are designed for exercise, intimacy, and even swimming! Each garment has a pouch inside that holds the bag securely. I came across an article about the founder of the company in a Crohn’s magazine and thought it was such a great idea… so helpful to so many people.

      http://www.ostomysecrets.com/index.php

      Take care,
      Mary Margaret

  37. Bjorn said

    Jennifer.
    You can swim and do all the other things you would normally do without the stoma bag! I’m 29 and I had my first surgery a month ago.
    So far I’m really happy with my new situation. I choose to focus on all the good aspects the surgery brought with it. I can eat again, my body is getting healthier and I have more energy. Besides that I can now function together with my friends, go to the movies, restaurants etc.

    If people are making jokes on your behalf, it tells me more about them than about you. But you should really try and be open with people about it and show them that you don’t have a problem with it.
    Are you going to complete the takedown procedure?

    I wish you all the best!

    -B-

  38. Jessica said

    Thank you both so much for all the information! I just came across your sites tonight, my hhusband had his let down surgery on Feb 24, 5 days ago. He had his first sutgery in 2008. ( I cant believe I never found you guys, as much as I have searched the web for positive information.Anyway so he just had his let down all of this due to UC that he almost died from, because of doctors who werent very attentive to his concerns. Eventually we found an awesome surgeon who we LOVE and are so grateful to. Since his letdown 5 days ago he has suffered from extreme gas pains and watery stools. We started keeping a log today of the number of bms a day. From 9:30 am to 9:30 pm he has had 20. Yea thats alot! Hes pretty bummed about it, we are both trying to stay positive and the dr says to give it time. We have started some exercises to relieve the gas pressure. I bend his legs and push them toward his abdomen the same thing I have done to my three children when they were gassy as babies. This helps so much! Once his stoma area is healed completely he can continue these himself. he took immodium with the ileo because he had fairly watery stools most of the time. The Dr says to not take anything until we go for his one week checkup. Thank you again for your POSITIVE comments. There is so much negative info out there about the jpouch it was starting to get me down but this gives us hope that everyone is different!
    Thanks,
    Jessica

  39. Dennis said

    Thank you

  40. Mark said

    Hi Mark,

    I just wanted to take a minute to say how amazing this diary of yours was. I am 22 and was diagnosed with UC about 5 weeks ago, i’ve been out of hospital for 4. It’s been difficult to adjust to the change and to accept the fact i cannot undertake my life’s ambition of joining the army. Anyway I’m on Infliximab to treat it as the steroids didn’t work. I’ve been taking asacol and azathioprine aswell to help get me in to remission. However between each infusion of Infliximab it sometimes feels like i’m going backwards and deteriorating back to pre-diagnosis days. It’s been pretty frustrating and depressing with surgery playing on my mind a lot but these posts make it seem like its not so bad and even if worst comes to worst there still is a light at the end of the tunnel so once again thankyou.

  41. Anthony v said

    mark you are truely an inspiration. I am at the point in my UC career you could call it. Where i spend almost every day reading about Jpouch surgery, your blog is the most informative and personal thing i have read yet.

    I’m a 19 year old male and have had ulcerative colitis for 11 years. I’ve read heaps about the j pouch and the two obvious things that scare me are having no bowel control, the j pouch failing and losing sexual function. If you don’t mind answering, were you able to function after you had your surgeries? or did it take months to return with times you wondering wether or not it ever would?

    i really appreciate your time and am interested how you are going now

    thanks 🙂

  42. Jessica C said

    Anthony,
    I posted a comment a few abouve yours. I thought I would respond to you as well. I agree that Marks story was an inspiration. My husband who is now 33, had J pouch surgery in Feburary 2011, so he is 5 months into it. At first he was a little discouraged, he has many bowels movements in a 24 hr period, I would say 15-20. He was up several times a night. Now he goes 5-8 times a day takes a generic form of immodium 3-3 times a day. And very seldem gets up at night to go to the bathroom. Getting a full nights rest has improved his attitude tremendously.It was only about 3 months after the surgery that he stopped getting up at night. The Dr told him that it would take a full year for the pouch to stretch out. So he still has time for improvement I would say his daily BM’s may possibly slow down. He passes gas, which for him was a huge relief, he thought that he would have accidents each time he did, but never has. As for the losing sexual fuctions, he was terrified about it, he almost didnt have the second surgery because of his fear. His Dr reassured him it was a very small percentage that is affected and in most cases it is older men. My husband has never has an issue. I know that is some relief to you as it was to him anytime we found an article with positive thoughts. Seems we came across so many that were negative, thats one reason I love Marks story. As for my husband he is living a normal life working harder than ever and enjoying being healthy, the only thing now is trying to put more weight on him. He is 5’10 and currently 161 lbs. He has always been between 178-190, so to us he seems very thin. But we do blame much of the weight loss on his working outdoors in the heat. He eats whatever he likes, whenever he wants to. Anthony I wish you all the luck and look forward to hearing about you progress. If you want to email myself or my husband please do so, I know it would make my husband very happy to share his story or advance with anyone who may benefit from it. jessi_chatelain@yahoo.com

  43. Megan said

    Hey Anthony,

    our site was moved to http://www.jpouch.net and there you can find all the follows up on Mark’s surgery. But in a nutshell life is wonderful now after his surgery, 3 years out and we have a new baby and his health is great.

    megan

  44. James said

    Dear Mark,
    Thankyou for sharing your experience, I’ve had an ileostomy for 1 year and am now making the decision whether to go for reconstructive surgery. At first I didn’t want to go for any more surgery, but I realise that at the age of 19 it is better to have tried and failed… I am pleased to hear everything has gone well for you and the scars are hardly noticeable. I now hope I can have the same positive outcome returning to more confident sporty self.
    Thankyou

    • Scott chatelain said

      My name is Scott. This is my wife’s log in but she saw your post on here and too me about it and I wanted reply. You will have to make the decision for you but I can tell you that I would do it every time. I had the bag for 3 years and had the reconstruction about a year ago. I don’t regret doing it at all. Life is almost normal again. Wish I had made the decision I to do it sooner. I took Imodium for the first 8 months or so (no metimucel as it hurt me more than helped me). After about 8-9 Months I only take Imodium once or twice a week when my digestive system takes a hit by bad bacterium. Even then it’s only 1-2 a day instead if the 10 a day I was taking he first 8 months. Your diet will have a lot to do with it. For me the things to stay away from are high bran foods like cereal. I never eat beans anymore!!! LOL. Never armed for em anyway. But things that help my regularity is while grain bread and whole wheat bread. Steak, hamburger, and pretty much any other food of the sort are great for me. I am loving it so far man. The first month or so will suck. Make yourself ready for that and accept that it will not be a picnic. But keep your faith, do some praying and stay the course and it will get better. For the first month or two I went to the bathroom 8-12 times a day. After 3 months it was 8-10. After 6 months it was 6-8. After a year I now go 4-6 times a day. I’ve gotten used to it but as you know when u have UC you go a lot more than that so 4-6 times (with no pain) is a dream come true.
      I am truly sorry that a person so young has to go thru this like you and others. I was 28 when it hit me.
      You will have to decide for yourself but as for me, I would definitely do it again. Best decision I could have made. Good luck brother.

  45. Aaron said

    Hey Mark, who was your surgeon? I’m looking for a good surgeon in the Portland area.

  46. Christy said

    Hi Mark
    My name is Christy and I am looking forward to having my second surgery in July. I had my first surgery in December after being rushed to the hospital with severe complications due to UC. I was down to 110 pounds, I am 5’9″, and my hemogloblin was 58. I could not stop bleeding and was in a lot of pain running to the bathroom 12-15 times a day.
    I remember waking up from the surgery and looking at my husband and saying, “the pain is gone!” Best decision I had made, my only regret was that I waited 4 years to come to the conclusion. I am so type A! I thought I could fix myself ….not so much.lol
    The one thing that really made the whole thing so much easier to understand and go through was reading your story. You were honest and up front about everything and that is something I admired and appreciated.
    I am from Canada and unfortunately my surgeon does not do the reversal before 6 months. I went in at 3.5 months and told him I was ready and he just laughed. I am looking forward to the reversal but like you am fine if it does not work and I am stuck with the ileostomy.
    I hope I come through it like you with flying clours and just wanted to say thank you! Thank you for having the courage and guts(no pun intended!) to allow us to follow your journey. You truly have inspired and helped so many of us living with UC, ileostomies and surgery!
    I hope you have continued good health and wish you and your family all the best.
    Christy

  47. Faith Willinsky said

    I happened across this when reviewing literature; I’m a research nurse. This was tremendous journey and I’m sure a great life lesson for those with the same issues and undergoing the same decisions/procedures. You have an incredible sense of self-worth with your willingness to share your circumstances.
    Bless you and your strong family with good health and fortune.
    Faith

  48. bani said

    Thanks a lot Mark , ur positive attitute has given me hope
    M a nursing student(internship)
    Was diagnosed with this disease in 2010 feb
    My symptoms r nt so severe but still want to get rid of this chronic disease, now i can plan for surgery in future, because of u
    I really want to get back that healthy feeling again.

  49. Abbie said

    Thank you for your story. I am facing a total colectomy for complications of uc! I know everyone is different but it helps to hear all sides. BTW have you considered trying high dose probiotics I’m talking like billion unit dose probiotics. I am using them with my uc now and it has made a positive difference in the consistency of my stools. I use something called VSL 3 I per order from costco pharmacy. Might want to ask you surgeon/ GI doc if it’s ok for your condition. Thanks again!

  50. I was recommended this blog by means of my cousin. I am not certain whether or not
    this post is written by means of him as no one else recognize
    such special about my trouble. You are amazing!
    Thanks!

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