Mark 9 month Jpouch Update

by on Friday, August 8, 2008 4:07
This entry is filed under: UC

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 http://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to Même si vous cliquez sur l’un des jeux sans y être inscrit, vous serez en mesure de voir ce à quoi le jeu ressemble et ainsi vous entraîner, ce qui est appréciable lorsque vous décidez sur quel casino vous souhaitez jouer. 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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115 Responses to “Mark 9 month Jpouch Update”

  1. avatar

    Brenda says:

    August 8th, 2008 at 2:51 pm

    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. :)

    [Reply]

  2. avatar

    mark says:

    August 8th, 2008 at 3:44 pm

    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 http://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

    [Reply]

  3. avatar

    Kyel says:

    August 14th, 2008 at 3:40 am

    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

    [Reply]

  4. avatar

    Eric Mills says:

    August 14th, 2008 at 3:10 pm

    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?).

    [Reply]

  5. avatar

    mark says:

    August 14th, 2008 at 3:25 pm

    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

    [Reply]

  6. avatar

    mark says:

    August 14th, 2008 at 3:29 pm

    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.

    [Reply]

  7. avatar

    Karen says:

    August 14th, 2008 at 7:35 pm

    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

    [Reply]

  8. avatar

    JM says:

    August 14th, 2008 at 7:44 pm

    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.

    [Reply]

  9. avatar

    Megan says:

    August 14th, 2008 at 8:14 pm

    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 http://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

    [Reply]

  10. avatar

    bellyluv0sofine says:

    August 21st, 2008 at 4:20 pm

    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

    [Reply]

  11. avatar

    bellyluv0sofine says:

    August 21st, 2008 at 4:21 pm

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

    [Reply]

  12. avatar

    Megan says:

    August 21st, 2008 at 8:51 pm

    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

    [Reply]

  13. avatar

    Lisa says:

    August 29th, 2008 at 4:16 pm

    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

    [Reply]

  14. avatar

    mark says:

    August 31st, 2008 at 12:12 am

    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

    [Reply]

  15. avatar

    Ken says:

    September 3rd, 2008 at 3:57 pm

    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

    [Reply]

  16. avatar

    mark says:

    September 3rd, 2008 at 4:13 pm

    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

    [Reply]

  17. avatar

    Ken says:

    September 9th, 2008 at 8:17 pm

    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

    [Reply]

  18. avatar

    mark says:

    September 12th, 2008 at 5:03 pm

    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

    [Reply]

  19. avatar

    Jewels says:

    September 15th, 2008 at 1:27 am

    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!!

    [Reply]

  20. avatar

    mark says:

    September 15th, 2008 at 5:14 am

    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

    [Reply]

  21. avatar

    Michael says:

    September 25th, 2008 at 4:34 pm

    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?

    [Reply]

  22. avatar

    Eric says:

    September 25th, 2008 at 11:14 pm

    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”

    [Reply]

  23. avatar

    mark says:

    September 27th, 2008 at 2:46 pm

    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

    [Reply]

  24. avatar

    Davus says:

    October 22nd, 2008 at 5:50 pm

    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…

    [Reply]

  25. avatar

    mark says:

    October 22nd, 2008 at 7:34 pm

    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.

    http://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

    [Reply]

  26. avatar

    Shellee says:

    October 26th, 2008 at 4:00 am

    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

    [Reply]

  27. avatar

    Becky says:

    December 5th, 2008 at 1:56 pm

    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

    [Reply]

  28. avatar

    mark says:

    December 5th, 2008 at 4:57 pm

    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

    [Reply]

  29. avatar

    Megan says:

    December 5th, 2008 at 9:28 pm

    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:

    http://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

    [Reply]

  30. avatar

    Becky says:

    December 10th, 2008 at 10:57 am

    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

    [Reply]

  31. avatar

    Megan says:

    December 10th, 2008 at 2:33 pm

    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

    [Reply]

  32. avatar

    Stephanie P says:

    January 10th, 2009 at 11:43 pm

    Mark:
    I’m so happy to hear that you are doing great. I have my j pouch surgery on wednesday 1/14/09. I’ve been a little nervous and excited. One step closer to taking down my stoma (i’ve had it a little over a year now). Hearing you doing so well gives me hope that all my struggling will be done soon and i’ll get my life back.

    THank you for all the information your site provides. Keep up the great work. People like you give strength to those like me who need it the most. THank you from the bottom of my heart. Wish me luck for this wednesday. Hopefully I’ll be as lucky as you!
    Stephanie P.

    [Reply]

  33. avatar

    Tracey Falkenberg says:

    January 11th, 2009 at 1:28 pm

    Hello Mark, My brother just recently had an ilestomy and he is having a hard time with it leaking. I read before about how to stop it but i can’t find it now, and i want to tell him what to do. Can you give me any inspiring words to give him or any help? It’s been a month since the surgery now and he is still very weak and skinny. If you can offer any kind of help i would so much appreciate it Thanks for your time

    [Reply]

  34. avatar

    Mark says:

    January 11th, 2009 at 2:46 pm

    Hi Tracey,

    Sorry to hear your brother is struggling with his ostomy. Leaking could be due to many things but mainly you’ll need to figure out if the flange around the stoma is cut to the right size for him. Megan would help me with that she’d get right down there with the stoma and we’d figure out the right hole size. Leaking is also from it not sticking right to his skin, so you should read what Jason Pa says in this post (Jason’s post is the 2nd one) http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/5071010732/p/1
    The other possible cause of leaking is that the appliance he is using isn’t right for him, I was told to use an appliance that popped up because I had a small stoma, but that didn’t fit me right even though the ostomy nurse said it was right for me.

    Also, you should probably visit, http://www.jpouch.org and post on the ostomy forum there, and of course, the excellent UOAA forum board

    http://www.uoaa.org/forum/index.php and people on there can help you figure out how to trouble shot the problem.

    Physically it is indeed a tough recovery, but how is his emotional state going? Is he coping with all this okay? It is really common to have trouble emotionally coping with this which can be hard on the recovery. He needs to just get back into life, get out there, start eating, living and having fun – and remember he is NO LONGER sick, he is a healthy person in recovery. I didn’t really stick to a set diet or anything, I just started eating as I could and learned what worked for me, but never really on a “diet” (other than the first few weeks right after surgery with the stoma and of course, whatever the surgeon wanted right after surgery).

    You may also want to post on http://www.jpouch.org about him being skinny and weak, people there may have some good tips for you, especially with getting him on the right electrolite drinks and stuff. Holler if we can help with anything else, Mark

    [Reply]

  35. avatar

    Tracey says:

    January 12th, 2009 at 4:55 pm

    Hi Mark, I will send this information on to him, but he is still so weak that he cannot even sit at the computer. It has been a month since the surgery and he seems to be still so weak. He had many blood transfusion before surgery, so he was not in good shape when he went in and then his bowel ruptured during surgery. Then he got an infection on the insicion site and a nurse still has to come and change his bandages. He still had to have blood transfusion while in the hospital. He is not coping very well with it at all. He is very depressed and he doesn’t even know i’m writing to you. But since all of this has happened i have done a lot of surfing on the internet and that’s how i found you.. Thank you so much for responding back, I’m hoping to send this off to him and then maybe he can talk with you himself.

    [Reply]

  36. avatar

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    January 12th, 2009 at 8:31 pm

    […] Mark’s 9 Month Update, even though it wasn’t posted recently, had the most visitors. “My life 9 months with my jpouch now is completely normal, I don’t think about being sick…” […]

  37. avatar

    Jim says:

    February 23rd, 2009 at 12:51 pm

    Good day Mark, God bless the information you are sharing with everyone. I was diagnosed with UC about 4 ½ years ago (will be 41 in May). I have been on a rollercoaster ride for the last 15 months with numerous trips to the ER for flairs and other complications to the mixture of medications my GI Dr. had prescribed. I am in the process of interviewing surgeons for options and I could really use your insight on what questions to ask. I am currently on high doses of prednisone and Colazol that barely keep me under control. I have been frantically searching the web for information on the J-Pouch and I was lucky enough to find you. I am finally looking forward to the procedure when the time comes so I can have a high quality of life again. I will definitely have tons of questions as the procedure approaches so I just want to thank you for your insight and experiences in advance..

    [Reply]

  38. avatar

    vince mcgonagle says:

    March 13th, 2009 at 8:44 am

    hi mark, it was good to here about your experience with the j pouch .
    i have just come out of hospital following closure of my ileostomy that i have lived with for the past
    12 years
    . still getting used to the fact of going to the toilet naturally.
    it was good
    to read
    about your experiences and hopefully can relate to your experiences over the coming weeks.
    as things start to adjust, no doubt i will have more questions as time develops.

    [Reply]

  39. avatar

    Angie says:

    October 21st, 2009 at 1:56 pm

    Thank you very much for your detailed posting of your Jpouch journey on the CCFA website. It was because of your in-depth descriptions of the entire process that my mind was eased when I had my ileoanal pullthrough this summer. I too love my jpouch!

    [Reply]

  40. avatar

    Marisa says:

    December 1st, 2009 at 8:21 pm

    Hi Mark,

    I love researching about Ulcerative Colitis and life with a J-pouch. It’s always nice reading stories about before the surgery and then the recovery afterwards. I used to have Ulcerative Colitis, and I’ve had the J-pouch for almost five years. It’s been wonderful. I am currently fifteen years old and a sophomore in high school. I don’t really know why I’ve been researching more and more lately about Ulcerative Colitis and J-pouches, I guess I’m just maturing and starting to become more interested in what happened to my body, and how I can help keep my J-pouch as healthy as possible.
    I noticed the pictures that you posted. I too have a small horizontal scar where the stoma was, and I also have a long vertical scar running from above my belly button down to my pubic bone. So I’m assuming that I have a bit more scar tissue than you do. Although I am not overweight, I do have a small bulge in that general area, but I’m not sure if it’s from the surgery, or if it’s just belly fat. I have a doctor’s appointment once a year for this, but it’s not until April. I will ask my doctor when I next see him, but for now-
    •If it is just belly fat, do you have any suggestions as to how i could lose it? And do you know whether or not it’s harder or easier for people with a J-pouch to lose weight?
    •If it is scar tissue and whatnot from the surgery, is there any way to get rid of it? Or will I have to live with it for the rest of my life?
    Thanks!

    [Reply]

    avatar

    Mark Reply:

    Hi Marisa,

    Wow, that means you had your surgery at 10 years old. That must have been difficult to be sick as a child. Sounds like you are doing great now and I completely understand your desire to find info on UC and jpouch today. A lot of our readers and contributors on this site are people living with the jpouch. A while back over at http://www.jpouch.org there was a post running about people with long term jpouches. I looked to find that for you but I couldn’t locate it but you will find over there that many people have 20+ years. I think we have a great chance of a long live with our jpouch. Now about the belly question. Of course your doctor will be able to give you better info than me, but if you have the the vertical scar then you probably had an open surgery. Open surgery can leave different scars than lapro like mine. But if you look at the pictures from my 15 month update, you can see I’ve got a pocket of pudge around my stoma site and a little lower. I don’t know if it is scar tissue or what, but it won’t go away and I think it is from surgery. But to be honest, I just see it as a war wound that I’m willing to have if it means I’m HEALTHY!

    http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/ Your doc. may have some advice – sorry I can’t help more.

    Also, if you ever want to share your story we’d love to have you blog on the site since you have such a unique story being 15 and having the pouch for 5 years! Just send me an email at mdhilton@gmail.com if you ever are interested.

    [Reply]

  41. avatar

    katherine says:

    December 22nd, 2009 at 9:14 am

    Hi Mark.
    my name is katherine, I I was reading your blog, and I have to say, you’re doing a great Job, and I thank you for sharing your story with us.
    my husband just got his 3rd surgery done, like 2 months ago, the way you describe BM, is what he’s dealing with at this time.
    I see that you are keeping your self in good shape and feeling energetic, the case with my husband is the opposite, he’s feeling tired all the time and he’s losing weight, specially when he has to go BM every night 2 or 3 times…
    Right now I’m very concern, and I would like to know what worked for you?? in order to gain weight, and is dehydration an issue for you?
    and at what point you felt comfortable, to star exercising?..
    and how often do you exercise?
    I realllllllly appreciate it your answer, anything helps…

    thank you so much and my best regards to you, and your family.
    katherine.

    [Reply]

    avatar

    Mark Reply:

    Hi Katherine, Of course your doctors should have advice for you for weight gain. Is your husband losing weight he doesn’t need (in other words, is he losing fat?) or is he losing weight he needs? I gain and maintain my weight ONLY by eating a good of amount of healthy carbs. So every meal has some type of quality bread product, and I eat a lot of that bread at each seating. I lose weight weight when I eat only protein and veggies. I am a big sandwich eater since it has protein, veggies and carbs all in one. I do indulge in pizza and other junk more than I should but I try to be good for my heart more than anything. You’ll need to find for your husband what helps his body gain weight. There are LOTS of options like Ensure drinks for calories (watch the sugar levels on those). I too have 2-3 BMs each night, but if I use a good mix of immodium and metamucil I can usually slow it down to 1-2.

    And Yes, dehydration is an issue for most of us since we don’t have the large colon there to absorb fluid for us normally. So our small bowel is slowing learning how to absorb more fluid. The older the jpouch gets the more it will get used to its new job and he should have lower BMs and absorb more fluid. We have more BMs or watery BMs when we have lots of fluid not being absorbed. So for Megan right now, she is pregnant and dealing with constipation b/c her colon is absorbing all her fluids trying to keep up with the needs of her pregnancy. Do avoid dehdrydration he needs to watch the signs and know how to drink the right mixture of drinks to avoid it, I have a blend of gatorade in the morning (to get my salt intake to help my body absorb fluids) and then I drink water the rest of the day. Any time his muscles hurt, or he feels dizzy increase his fluids intake.

    I exercise in the form of work mainly, I work with my body in the construction industry so that is my main exercise. But Megan and I do have a Wii Fit and we play that a couple nights a week and I work on my balance mainly. We used to do pilates but had to stop due to expense, but I loved pilates with the machines and we would totally do that again when we can afford it.

    And please know I do feel energetic, I am energetic because I am NO LONGER sick with UC. I’ve got this great 2nd chance in life to live healthy and feel good and I will live that to the fullest that I can. I think this recovery is a lot about healthy mind = healthy body.

    Mark

    [Reply]

  42. avatar

    Bonnie says:

    January 26th, 2010 at 12:04 pm

    Hi Mark, awhile ago I emailed you concerning my 8 yr old granddaughter. She just turned nine, had the surgery and on Feb 12 gets the reversal. She had a blockage recently, and before that a prolapse so the poor little thing has gone through a lot. The problem she is having is rawness around the bag area and also itching. Any suggestions, wondering what you found works best and what bags work best if you had any of these problems.
    Thanks. Bonnie

    [Reply]

    avatar

    Mark Reply:

    Glad to hear she did well with the first surgery, and sorry to hear about the skin around the stoma. Unfortunately that is common, but do read these instructions/advice from Jason PA on the following link (his reply is the 2nd post). He is a perm ileo so he has lots of tricks and his advice in this post in the most helpful I found — http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/5071010732/p/1 Please let us know how she adjusts to her jpouch, I’m sure she’ll be much happier once she gets her jpouch up and running.

    [Reply]

    avatar

    Marisa Reply:

    Hi Bonnie,

    I just read your comment, and your granddaughter seems to have very similar symptoms as I did when I was sick with Ulcerative Colitis. I’m not sure how much I can help, but I’ll give you a little background information…

    I am currently 15 years old. I was diagnosed with UC at 8 years old, and suffered with it until I was 10. Then I had the ostomy surgery. Two months or so later, I started getting really bad stomach cramps, so bad that I had to be rushed to a hospital three hours away where I had all four of my surgeries. Turns out I had a blockage. They fixed it, and two weeks later I was released. A couple months later, the skin around that area started to get really red, itchy, and irritated. My doctor told my parents to buy a cream called Ilex, and apply it on the affected area before applying the bag. The Ilex really worked for me for the last couple of months before I had the reversal surgery. You could recommend that to her parents so they can ask their doctor about it. Hope I was helpful!

    -Marisa

    [Reply]

  43. avatar

    Chris says:

    March 3rd, 2010 at 9:30 am

    Hi Mark,

    Thanks so much for sharing your story in this blog. I hope you realize the positive impact it is having on so many people.

    It’s great to hear how happy you are with the J-pouch decision 9 months in. I’m currently at a point where I’m likely going to need to make a decision myself soon, as the Remicade and Prednisone just aren’t working as well as they should.

    Regarding the surgeries, I was just wondering how the healing process was? Was there a lot of pain after the colonectomy, and how long before you could kinda “function” again? Just wondering what I have to look forward to. In any case it sounds like it was definitely worth it.

    Thanks again and God bless.

    Chris

    [Reply]

  44. avatar

    Donna says:

    July 1st, 2010 at 5:46 pm

    Hi Mark, I had my surgery 2 years ago and came across your blog tonight and think it is great, would have been great to have something like this when I was getting my pouch. Any how to agree with all that you have said, I have had no problems with mine since being done, eat and drink what i like, went camping a week after my 2nd stage of surgery and can saefely say its the best thing I have done

    Donna

    [Reply]

  45. avatar

    lafem says:

    April 30th, 2011 at 3:36 pm

    An increase in waist is SCAR tissue. J pouch surgery is life saving and necessary HOWEVER it is NOT a cure.
    NOTHING was done to correct the immune system. inflammation still abounds and all extra terrestrial symptoms are there. UNTIL the cause of the disease gets correct ( mormailiozing immune system , it will still be there, just less and out of the danger zone
    The bastard doctors lie.

    [Reply]

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    [Reply]

    avatar

    Uffe Jensen Reply:

    Soreness and burning of the skin around the anus can be caused by leftover digestive enzymes. Wiping with paper is not enough to remove the enzymes. After wiping use baby-wipes or simply rinse with water, then use paper to remove the water, which hopefully contains enzymes or other irritants. Repeat once or twice even if the area appears to be clean.
    Another tip: if you have trouble getting rid of gas, lie on your stomach for a few minutes while passing gas. Note that this can sometimes also get enzymes on the skin.

    [Reply]

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