J-pouch lessons learned, one year after surgery

20150211_085539On February 11, 2014, I went to Mount Sinai Hospital in Toronto to get my ostomy reversed and my j-pouch up and running. I remember on that day being rushed through the usual protocols and procedures that precede an operation, because the operation that was scheduled before mine was cancelled. So rather than have all the doctors and nurses diddle around for a few hours, my surgeon’s office called me that morning and told me to get to the hospital as soon as possible.

I woke up after the surgery in the expected amount of pain, although it wasn’t as intense as what I felt after my first operation in May 2013, which was a considerably larger and more complex job. I had a tube in my nose, another in my ass, and a string of staples beside my belly button where my ostomy used to be. I was back home after four days in hospital and another period of recovery lay ahead.

Today, I look back on my first year with a j-pouch as a relatively successful one, although there are still complaints and challenges and aspirations yet to be fulfilled. I do consider myself rather fortunate on the whole, and so I thought it might be helpful to other j-pouchers, or people with IBD who are contemplating pelvic pouch surgery, to go over what I’ve learned after a year of living with my altered innards.

Bowel Movements

Really, where else could I begin?

The transition from an ostomy to a J-pouch was difficult, and even after a year it’s still a work in progress. In the first few months after my ostomy reversal, I would have to use the bathroom roughly eight times a day. That number, however, belies the actual amount of time I spent in the bathroom.

The first challenge I encountered with bowel movements was the inability to completely empty the pelvic pouch in one shot. I found that after having a bowel movement, I’d clean up, wash my hands, and a few minutes later feel the urge to go again. So rather than make multiple trips, I would just sit on the toilet for 10-20 minute stretches. I didn’t strain or push to get things out, I just waited. That strategy proved especially frustrating in the middle of the night, when my sleep was broken with 20-minute bathroom trips, sometimes twice or thrice a night. I was working part-time from home during this phase of my recovery, so I had the luxury of being able to sleep in every morning.

By around the five month mark, it became easier to get through the day’s bathroom trips without having to spend an excessive amount of time on the toilet. I developed a routine of going first thing in the morning, around 8 a.m., and sitting down for 10-15 minutes. After that first trip of the day, I’d be in good shape until about 1 p.m., when I’d have to go again. Then I’d have trips again around 4 p.m., 6 p.m., and 9 p.m. Then I’d try going again before bed, at around 11 p.m. I could sleep through the night about three times a week, with the other four nights requiring a bathroom trip at about 3 a.m.

With the exception of the middle of the night shits, I’d spend about 10 minutes on the toilet trying to get a good clear-out. I would stand for about a minute after the first wave of stool came out, so that more stool could drop down and be ready for removal. I also found that sitting on the toilet with my legs stretched out in front of me could make for a better clear-out. For those bathroom trips in the middle of the night, I’d usually sit, shit, clean-up, and go back to sleep.

I’m now working full-time, and I typically go 5-6 times during the day, and usually once overnight. The average span of each trip during the day is about 10 minutes, but the overnight trip is pretty quick and doesn’t cause much of an impediment to sleep. I still do have a hard time getting thorough clean-outs. It’s frustrating when you spend 10 minutes on the toilet, clean yourself up, and then feel an urge to go again a moment or two later.

My stools range from largely liquid to small, formed pieces. I like to analogize those pieces to KFC’s popcorn chicken so that people get an idea of how big they are and so that they never want to eat popcorn chicken again. Sometimes the bits are even smaller, sometimes there’s a mix of formed pieces and liquid, and sometimes there’s a sludge-like consistency similar to the output from an ostomy.

Part of training the j-pouch to function effectively is to not go to the bathroom every time you feel the need to. I’ve been quite happy with my ability to hold in the shits, whether sitting, standing, walking, or lying down. I wore adult diapers every time I left the house for the first month after the operation, just as a safeguard, but their absorbency was never tested. Holding it in was a painful practice at first, and even today it can be painful to do so, especially when the pouch is near its carrying capacity. But I can do it. It’s not like when I had a flare-up of my ulcerative colitis and I couldn’t hold in the bowel movements.

Farting

Yes, you can fart with a j-pouch, but it’s a tricky and sometimes dangerous proposition. A buildup of gas in the pouch can cause a considerable amount of pain in the pelvic area. When trapped gas wants to escape, it feels essentially the same as the urge to shit, and therein lies the problem. If you try to let out the gas by farting, there’s a good chance that some stool will come along for the ride. So to mitigate the risk of sharting myself, I usually try to let out gas while sitting on the toilet.

I can generally ride out the pain of gas trying to work its way out of my body. If I’m sitting I’ll lean forward, and if I’m standing I’ll cross my legs. I’ll hear a rumble in my pouch and the pain will subside, but if there’s a significant buildup of gas and/or stool, the urge will return within a few minutes. However, I have found that if I lay on my stomach or on my side, I can let out gas alone. Successful farting usually occurs while I’m in bed, and for that I apologize profusely to my girlfriend.

The most frustrating aspect about dealing with gas is that it relies so much on timing. If I feel the urge to let out the gas, and I’m not near a toilet or a place I can lie down, I’ll hold back the urge and it will pass. Then when I do get to a toilet, the gas sometimes doesn’t come out, only stool. So I’ll clean up, walk away from the bathroom, and the gas will make itself known again. If I’m near a toilet right when the urge strikes, I can get a good clear-out of gas, along with some stool. If you can just let a fart rip wherever you are and whenever the feeling strikes, I envy at least a part of you.

Butt burn and bidets

Butt burn is exactly what it sounds like, although for me, I also experienced an intense itch during my bouts with butt burn. It’s a tough itch to scratch, because after a burning bowel movement, the instinctive reaction is to stick a finger where it itches, but that would only make things messier and more unpleasant.

The butt burn and itch set in about a month or so after I left hospital, and did so regardless of what I ate, and regardless of the creams I used in an attempt to prevent it. I think that part of what made the anal area so uncomfortable was my clean-up regimen. From the moment I returned home from hospital, I used a handheld bidet and “flushable” wet wipes. But not using regular toilet paper meant I wasn’t properly drying the area. That leftover moisture could have been partly to blame for the itchiness.

I also discovered that “flushable” wet wipes is a misnomer; they don’t break down like regular toilet paper and really shouldn’t be flushed. I kept using the bidet, but then regular toilet paper to dry/wipe up the area. I also started using Calmoseptine ointment once or twice a day to relieve the itch and create a little moisture barrier. I kept the wet wipes in my backpack for bathroom trips when I was out of the house, but I used them in combination with regular toilet paper, and I tossed the used wet wipes in the garbage.

When I started my full-time job in August, I brought a box of wet wipes with me on my first day to keep in my desk. Over that first week at work, I kept forgetting to bring the wipes with me to the bathroom, but I discovered regular toilet paper worked just fine. A little less comfortable, but also less cumbersome. I haven’t used wet wipes at work, or anywhere else, since. I still use my handheld bidet at home, and I have to say it’s rather refreshing.

Food and drink

In the first two to three months with the j-pouch, I stuck to a low residue, low fibre diet. That meant limits to raw fruits and vegetables, no grainy bread products, and plenty of white bread, oats, applesauce, and peanut butter. Meats and dairy products were cool. I was, and still am, good with cheese, yogurt, and ice cream, but I don’t drink milk.

Over time I introduced more foods into my diet, including small portions of raw fruits and vegetables, and even nuts, which I used to steer clear of. I still avoid popcorn like it’s an unvaccinated child, and I try to avoid or at least limit spicy foods, because they bring back the butt burn.

When I first had my colon removed, I found that I would get thirsty quite easily. That’s changed as my intestines have adjusted to their new setup. I drink at least two litres of water a day, and closer to three when I exercise. While I probably could drink alcohol, I choose not to because Allah says it’s haram.

I’m just fucking with you, I’m not religious. But I genuinely do avoid alcohol, because I’d rather not risk it causing any intestinal troubles.

Medications and supplements

I was sent home from hospital with painkillers. I didn’t take any. I was on a proton pump inhibitor called Dexilant, used to decrease output, before the ostomy reversal. I was able to taper off the medication and I don’t use it anymore. I’m happy to say that for the moment I’m medication-free.

However, I did run into difficulties last fall when my iron levels dipped. I took an over-the-counter iron supplement for a few months to bring the levels back up, and have since tapered off it on the advice of my doctor. Hopefully I won’t need them again, but it is a possibility. I also use a supplement powder called Vega, which I shake with water and drink every evening. I found taking it in the morning caused more bowel movements.

Exercise

After my surgery, I couldn’t wait to run again, but I did hold off on running for longer than the recommended post-op period. Even so, I probably should have waited a little longer, just to be safe. I have been able to run again, which I did regularly last summer. A couple of 8-9 kilometre runs were my best distances. However, I encountered difficulties in the fall.

I noticed that running in the evenings was at times uncomfortable because gas would build up and cause pain in the pouch. I could hold in the gas, the pain would subside, and I’d get on with my run. After the run though, I would let out a bloody bowel movement. The next bowel movement after that would be normal again, and there would be no blood in any of my bowel movements until after my next evening run. Curiously, I didn’t have this problem if I ran in the morning before I ate.

My doctors and I are still trying to figure this one out, and it’s still something that concerns me. If for whatever reason I had to stop running, I’d likely fall into a deep depression. In the meantime, I’ve opted to run less frequently and only in the mornings, and take walks in the evenings. Walking is still one of my great pleasures, as it was during my recovery after both surgeries. On my commute home from work, I get off the bus a few kilometres from my house and walk the rest of the way.

Work

The two hallmarks of my first year with a pelvic pouch were the ability to run again (despite the concerns noted above), and the ability to work full-time again. Being entrusted with work to do is a right proper boost to one’s psyche, and I’m relieved more than anything that my body has held up to the rigors of a full-time job. I haven’t taken any sick days, and I’ve only occasionally had to arrive or leave early for doctor’s appointments.

Looking back, it was also beneficial to only have had a part-time job I worked from home in the immediate aftermath of the operation. I certainly wasn’t up for commuting and full days away from the comforts of home (namely my home bathroom), and I was fortunate enough to be able to live in my dad’s house and work off a laptop in my bedroom while I recovered. I could put in my scant working hours when I was up for it, and I could break up my day with a long walk in the afternoon – a perk I truly miss now.

The psychological side

When you go into an operation that’s going to mangle your insides, you expect there to be physical difficulties in the weeks and months that follow. But you may not anticipate the psychological challenges you’re almost bound to confront. I regularly fell into pissy moods and sad stretches after my first operation, namely because the operation came with multiple complications. The second surgery went more or less according to plan, but the ensuing recovery was not devoid of mental angst.

After taking a year out of my life to recover from my operations, I became increasingly frustrated with the slow progression of my health. The longer I went without full-time work, and without the ability to live independently, the angrier I became. Angry at other people who had it better and easier than me. Angry at my own horrible body for screwing me over time and time again. Angry that as I approached 30, I was nowhere close to making an even remotely notable contribution to the world.

Mixed with that anger were nights spent crying over feelings of regret in choosing to have surgery, over nostalgia of better bygone days, and over the sheer exhaustion of living through cycles of setbacks and recuperations.

Those flashpoints of anger and sadness and frustration are still there. They simmer under the surface and bubble up when I see blood in my stool after running, when I have to hold in a bowel movement while eating a meal, when I miss my morning bus because even 20 minutes on the toilet weren’t enough.

It’s not all gloom, all the time though. Sometimes I catch myself feeling lucky to have survived all that IBD has levelled at me, especially when I know others with the disease struggle still. Sometimes I feel amazed at the fact that my body has healed after being sliced open and stapled up a couple of times. Sometimes I realize that it is quite remarkable what I can do despite not having a vital organ. Sometimes I think about all the knowledge and skill of my doctors and nurses, and all those who came before them who helped establish a wealth of scientific understanding that has never in human history been as immense as it is today.

On February 11, 2015, I went to a nondescript office building in Mississauga to get to work. One year with a j-pouch gone by. It’s been rocky, but positive overall. I’m running, working, and soon to be apartment hunting so I can make the transition to real self-sufficiency. There’s still more to learn about how to live with my pouch, and how to manage its difficult days without getting unduly upset. I’m not exactly where I’d like to be in life, and living with a pelvic pouch will make attaining that place in life undoubtedly more difficult than if I had properly functioning bowels, but I’m here, alive and writing and hopeful that I can find better days and work to become a better human being.

UPDATE: See what progress I made between year one and year two with a j-pouch here.

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About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

54 comments

  1. Thank you for sharing such an honest and insightful story.

    All the very best

    • Thanks, Gav. I’m not always honest in real life, but I always try to be on my blog.

      Best to you as well.

    • Barbara Jones

      Thank you so much, for putting into words, my every day struggles living with a j-pouch! I had my surgery in May 2009 after being diagnosed with rectal cancer. I experiene everything you have experienced. I have searched the web for years trying to find someone that would understand. Now I do not feel alone. I think my biggest challenge is to get others to understand the bathroom problems. I do not go out much unless I really feel like I may have a good day. I used to go out in the morning before eating anything. I still would not go out for long. Problem with that was nutrition problems. I have had issues with low potassium and B-12. I was really sick last fall from the low vitamin B-12. I could hardly do anything because I wa so weak. I had to research online to see what may be the cause and after a while of searching I found what could be the issue. I boied up some eggs and started scarfing them down along with B-12 I ran out for even though I was very weak. Within one day I started feeling so much better! I still have problems but is much better. Very frustrating. Now I am dealing with high cholesterol and pain from scoliosis. I often wonder if the medications I take sap some nutrients out of my body. I don’t seem to get answers from my doctor, just an RX for some new drug to try that will most likely clme with a long list of side effects. Sometimes I think I may go back to the ostomy, seemed I could do much more, but of course, that comes with its own problems. Thank you so much, once again for posting your experience and I hope things will get much better for you!

      Barb

      • Hi Barb,

        Thanks for reading, and sharing your story. I’m sorry to hear that life with the pouch has been rough. It’s hard to balance getting adequate nutrition and not having to make multiple trips to the bathroom. It’s ideal for me to exercise first thing in the morning before eating, so I don’t have to worry as much about urges to go, but then I’m exercising without a great amount of fuel to keep me going. Frustrating.

        Medications are certainly hit and miss, and if you feel like the drugs you’re taking are taking away from your quality of life, it’s worth researching the side effects and asking for blood tests from your doctor. Of course that’s easier said than done. It can be hard to press doctors for what you really want. I hope things get better for you soon!

  2. David Faust

    Glad to hear that things are going well even if they are not as great as you would like. It’s a long road and improvements will continue to come your way.

  3. Terry Walsh

    Rasheed,awesome read.Went through the same Total Colectomy between 04/2013-04/2014. As an ultra-endurance athlete and avid runner,I relate well.I have not had any bleeding ever and I run 5-6. Days weekly 8-17 km with weekly volume 50-65km.

    • Hi Terry, thanks for your comment! I’m amazed by your athletic ability. I’ve eased off on running over the last couple of months, but I hope to get out more this spring. Obviously I’ll have to monitor how my pouch behaves as I go.

  4. Marty

    Thanks for writing this!! I enjoyed reading it (as I sat on my throne!)
    I feel your pain, I too had a jpouch reversal on March 9th 2015 .. I don’t seem to be as lucky as you though, toilet trips ranging from 20-40 times per day.. Still..
    Loved the part about the alcohol lol

    Anyways thanks again, good luck with the apartment hunting!

    • Hi Marty,

      I’m sorry to hear your pouch has been giving you such a rough time. Is there anything that can be done to bring down the number of bathroom trips? Maybe it’s taking a longer than expected time to adjust? I hope things do get better for you soon, and thank you for reading – from wherever you may have been.

      PS. I’ll have an update on the apartment soon!

  5. 007

    hi. did at any point your lower back start to hurt after the surgery ?
    i had my surgery done in 2013 and since last Sept my back started to hurt and the doctors said its due to the surgery some days its so bad that i can not even get out of bed

    • Hi 007,

      I didn’t have any back pain after my surgery. So far my back has been in relatively good shape. I still get occasional aches and pains, but nothing that seemed to be directly related to the surgery. If the pain is severe and persistent, you might want to press your doctors for more answers. Hope you start to feel better soon!

    • Barbara Jones

      Hello 007. I too had back problems after my surgery. It has been six years now since my surgery and I live with back pain daily. I found it quite strange that I did not have everyday pain before surgery. I was told I had scoliosis after an x-ray in 2014.. I have to have pain medication but am having terrible side effects that are really bringing me down. It is hard enough with the bathroom issues.

      Barb

  6. Kristen O'Gorman

    Rasheed,

    Thanks for sharing your experience. I think you nailed the psychological part on the head! I had my takedown on February 2, 2015 after 6 years of UC and a collapsed colon. I also ended up with Gastroparesis from all the inflammation/damage my colon and inflammation from the surgeries did. I’m managing, though, I wish it were easier. I have a lot of issues with the night time. It’s not that I go a lot… I just don’t feel it/wake up when I have to. It’s extremely frustrating and I hope, beyond hope, it gets better. I don’t have all the pain I used to have though, so, that’s definitely a bonus. Hope you keep updating. It’s always helpful to read that it does get better, even if it takes time. 🙂

    • Hi Kristen,

      Thank you for reading and for your kind words. Things are generally good with my pouch, and I hope that you’ll be able to say that about your pouch soon enough.

      It is incredibly frustrating when you want to see progress and it’s not happening, but that doesn’t mean things won’t improve down the line.

      All the best to you!

  7. Seems like you are doing well, and that’s very good. I’m nervous, frustrated and surprised at how slow recovery can be with the pouch. The colectomy was quick. I ran soon after and everything was smoother (except for my two blockages!). Takedown is horribly slow for me. I lost a ton of weight that I have managed to recover over a few months, I started running again, but had to stop, and I complain all the time. Still, my worst days these days are much better than my best days just after coming back home. I’m improving very slowly, but always improving. I’m looking forward to better days, like last Friday. I felt great, it was so good that it made me worried. This will keep improving.

  8. Robert Rochford (Sonny)

    I thought I would reply to your article because it is so close to what I had done. I had to have three operations over a period of 9 months and I had my take down in May of 2014 and I was back to work full time in two weeks. All of the items you listed are a mirror image to what mine are so I can relate. It all is still better than the seven years that I had to deal with colitis? I was 54 when I had mine done and I am still able to water ski and enjoy life. Good luck in the future we will need it?

    • Hi Robert, thanks for your comment. I’m impressed and quite envious about your quick turnaround time after after the takedown. Glad to hear you’re capable of enjoying life with the pouch. I hope we both have many years of good health ahead!

      • Robert Rochford

        I had all of the operations done at the Mayo in Scottsdale, AZ and I think I had the finest Doctor’s is one of the main reasons I was able to recover so fast. The other reason is a positive out look even with what I had to look forward to in the future?
        Robert

  9. Cody

    What a phenomenal article! Thank you so much for sharing all of the insignificant and repulsive details. As I’m sure we’re all too aware, no detail is too insignificant or repulsive when you are considering jpouch surgery.
    I admire your courage for going through with the operation! I don’t think a day goes by that the rest of us don’t fantasize about doing the same.
    Anyways, thanks for the article!

    • Hi Cody,

      Really happy to hear you found the article worthwhile. I spent plenty of time fantasizing about the surgery before I had it too, and as is so often the case in life, the fantasy was so much better than the reality. But overall the pouch has been pretty good to me. Hope you’re doing well!

  10. Chealean Peterson

    I understand your frustrations. I too have gone through the same as you. I had quit smoking cold turkey 7 years ago come Jan. Hiwever, I was diagnosed with UC I got sick quickly I had to have emergency surgery to remove colon. After first surgery I had found out I had blood clot in my abdomen. I had to go back in hospital for 5 more days. After first surgery I had been diagnosed with chiari type 1 malformation with syrinx cyst. Had surgery in 2012 for that. Then had second surgery for UC in Oct 2014 I had complications with that one. The doctors found out I had a fluid pack down by my bottom incision and next to my ostomy pouch. The third surgery was Feb 2015 when they did this surgery they found a hernia where my stoma was I had complications for a couple months after. I had a suture that started showing, the drs told me to cut it which advice to anyone don’t do that see your doctor right away, but the day after I got an infection got rid of that one I got 3 more. During all this I was also diagnosed anemic with iron deficiency. I had to have 2 blood transfusions and 2 iron infusions. It has only been 7 months since my last surgery but I still deal with certain struggles everyday and since losing weight I feel the movement in the j pouch when I put my hand on my stomach. I feel it where my belly button is after my surgeries and the right side of my stomach. It feels like air or fluid in it. I am now going back to work starting thursday. Sept 24th, 2015

    • Hi Chealean,

      I’m sorry to hear about all the complications you’ve had to endure. I had plenty after my first surgery, and I needed blood infusions too. I’ve managed to gain back most of the weight I lost after my first operation, but it’s taken a long time and I’d like to be able to add a little more. I’m glad to hear you’re heading back to work. I find having work to occupy my mind sometimes helps keep the pouch in check. All the best for your return to work, and with with the rest of your recovery!

  11. Jayne

    Hi Rasheed

    Here I am on a Sunday afternoon searching the web for a solution to the awful itching and anus pain I am experiencing 1.5 weeks after surgery. So refreshing to have stumbled across your article as it mirrors exactly what I am experiencing. Its really encouraging to see that you have improved and are moving forward with your life and that you have maintained such an excellent sense of humour!

    As a somewhat psychologically strong person I am surprised by how I seem to have been psychologically effected by recovering from take down. Thank goodness for my supportive partner as I just don’t think I could have managed otherwise. He probably knows all there is to know about pooping and butt burn now!

    I am currently following the same cleansing routine that you followed in your early days but my bottom is just too sore to go near it with toilet paper. I have however, decreased the amount of barrier cream I am using and always ensure I am fully dry.

    Just love your description of wind and timing – what an excellent, accurate and humorous description!!

    A huge thank you for taking the time to write such a wonderful article – I have no doubt that it has and will continue to help hundreds of people around the world.

    Jayne
    (United Kingdom)

    • Hi Jayne,

      Thank you for your kind comments, and I’m glad you could take something from my post. Calmoseptine has been the most effective cream for me, and I still use it once a day and additional times when needed. You might have to spring for some more expensive toilet paper to make the process more comfortable. I also found that patting – rather than wiping – the area dry made it a little easier.

      I’ve also heard of people using Vicks Vaporub to treat butt burn, and they claim it’s quite effective. I’ve never tried it myself, but I just thought I’d put it out there. Hope your pouch gets more manageable as time goes on!

  12. Steve

    I love this post, mainly because it gives me hope that after one year, it’ll be a little bit better. I had my take down in January, and things have progressed at a slow pace, but I keep thinking to myself that after a year, this will all seem silly! It appears it will. Like you, I’m probably at about 6 movements a day, which are usually like you, way too long. I wonder what people did before smart phones? Anyway, thanks for the great post, it was a nice read and I’m looking forward to the silver lining. Oh…and hope you were able to get back to running, I did my first chip timed 5K since the big flare that sent me down the surgery path…and it was awesome!

    • Thanks for that, Steve! Glad to hear you’re running again, and I hope things keep getting better. The progress can be slow, and even after you hit the one-year mark, doesn’t mean you can’t still find ways to make things easier. I find I can hold it in longer now than I used to, albeit with discomfort. And yeah, smartphones – they’re essential bathroom items now. 🙂

      • Danielle

        I just had my takedown on 11/30 and I was going frequently at first but now it’s been 2 days and I have not gone to the bathroom. Has anyone been constipated? I have the pressure n urge to go but it just won’t come out. Has anyone else had this problem with their j pouch? I just want it to come out! Lol

      • Hi Danielle,

        I’ve never been constipated with the J-pouch. You might want to try taking a warm bath to relax the abdominal muscles, and lying down in different positions – like with your knees pulled in close to your chest. I’ve found lying down in certain positions sometimes moves things along inside. Hope you’ll find a solution if you haven’t already!

  13. John

    Your story is exactly like mine. I am glad I found it. Witch Hazel is my best friend for butt burn. I recommend this procedure for anyone with long term bowel disease. It has been 18 months for me some small problems, but after 22 years of ulcerated colitis it is great.

  14. Pingback: Two years with a J-pouch | Rasheed Clarke

  15. Ricky

    Hi Rasheed,
    I just wanted to say thanks. Looks like I’ve got to do the surgery this summer, though it’s not quite 100% because of colitis/dysplasia stuff. I’m pretty freaked out, but I also have three kids and a wife I love and I can’t mess about with the potential for colon cancer.

    I appreciate your humor, warmth, and realistic take. I hope you do so well that you forget about this site and move on with your life, and I hope to join you in doing so someday.

    Best of luck. Ricky

    • Hi Ricky,

      Sorry to hear that surgery looks more likely now, but you’re right about not taking the chance with colon cancer. Life has improved for me quite a bit with the J-pouch, so I hope the same will happen for you.

      All the very best!

  16. CC

    Rasheed,

    Hi there! As a 15 years-ago-post-op J pouch recipient, I totally related to everything you wrote about. I can only tell you that it does get better. Aside from the recurring bouts of pouchitis, which are usually so far and few between that you have to remember why your suddenly feeling like there’s a cactus growing in your belly. Although I always try to eat healthy, I can tell you that low-carb and glutamine powder on an empty stomach has greatly reduced stomach discomforts and the gassiness, which seemed much worse after getting my J pouch. It’s probably improved my situation 80%. Also, desitin at night for buttburn!

    Hope this helps you and your readers!

    • Hi CC, thanks for all those tips! I’ve been using Calmoseptine regularly, and it’s really kept the butt burn in check. It’s really motivating and reassuring to hear from people who have lived with a j-pouch for many years, as you have, so thank you for taking the time to write. 🙂

  17. Dear Rasheed, thank you for a most honest and detailed journal. Had my surgery (in India–no insurance in America) in 2007. Two surgeries, three months apart. Yes, the first year was hell. I didn’t read all the comments but I’m wondering if anyone else has broached the subject of using an “enema syringe” rectal bulb tool to aid with clearing out. It brings its own problems (use in public restrooms being one of them), but does aid in clearing out. Because of other health related conditions, I choose to eat a diet high in vegetable material along with meat. Grains are “acidic” for me and uncomfortable. I manage without them–too high in carbs for my pre-diabetes. So, I heat a high protein, high vegetable diet and don’t have “butt burn.” I used to though.

    Other things of interest are the whole microbiome (gut bugs) paradigm that is trying to infiltrate modern medicine. Probably UC and IBD will be treated with “fecal transplants” in the future. (too late for me).
    But I was definitely not breast fed, given grains in the first month of life and multiple antibiotics before coming down with UC. Try to make sure I still get probiotics, prebiotics, and low carb to keep bad-bug fermentation down.

    In your procedure, did the surgeons scrape the lining of rectal tissue during your surgery? My American doctor muttered under his breath once, something about they should have done that in India. I’m still a candidate for rectal cancer, but hopefully they’ll catch it in time and open me back up and scrape the lining and then I won’t get cancer.

    Thanks for your website–

    Best
    Jamie

    • Hi Jamie, thanks for sharing your story. As far as food goes, I’ve been able to tolerate just about everything, including grains. Before my surgery, I did try a gluten-free diet which didn’t do a thing for me. One of the biggest problems with IBD is that it impacts everyone differently.

      No one has ever mentioned the possible use of enema syringes to help better clear out the pouch. I’ve gotten better at clearing the pouch out – just needs some patience, and usually standing then sitting down again helps.

      My rectum was removed along with my colon, so the scraping issue wasn’t there for me. In your case, even though you’re a candidate, I hope there’s never anything to catch.

      All the best!

  18. Trisha

    Hi Raheed!! I loved hearing your story! I also had my operations at Mt Siani but in 2010. Both were nightmeres. Everything that could go wrong, certainly did.the first year getting used to the new pouch was really tricky. Butt burn was a big problem. I resorted to ice on a wash cloth and a lot of sitting in a tub. I just want to share with you what 6 years out looks like. First of all I am a very active mother of two girls. Thank goodness for them as they are my reason for always pushing myself. I never ever feel sorry for myself and although I can sometime rack with discomfort, I continue to push myself for them. I get pouchitis frequently and juggle with Capri, flagyl, and lomotil. I have gotten quite good at knowing when I need them and when they are doing me harm. I have come across a few new riddles lately. The best was a few months ago, I started to develop pain in a strange part of my GI and through emailing my awesome GI here in Oakville, I discovered I was constipated! Now that was a new one. Obviously the first thing to go was Lomotil. I found a great tea that is peppermint, spearmint, and apple. I cut back on oatmeal and all other binding foods I usually eat – let me recommend Life brand cereal, it is a little miracle food for me. The recent surprise was that my mouth, tongue especially went black. This happened while I was in the hospital and they actually googled in front of me what could have caused it. So I googled and found that it was due to over meds and a disturbance with the friendly bacteria which I probably have none of due to all of the cipro and flagyl. I started to eat a half of children’s chewable probiotics and within 2 days my tongue returned to normal – phew. I am so happy to be able to have my body respond to some positive things. I take a full one around noon each day and it’s made a big difference with frequency. I have big problems with gas. The pelvic pain and pressure to my butt is very troublesome. Still trying to figure out what’s causing it. I have had times when I have had my pouch inflamed and I will use cortfoam. I bring it on vacations – just in case and it works very well. My tailbone can ache at times and my lower back can get quite locked up – I have found a great chiropractor and I go to barre class twice a week that helps build up those small muscles that have been compromised during surgery. I strongly recommend Epsom salts bath when things have been active and the butt becomes very sore. Just remember to rinse afterwards and put some diaper cream on the area and the butt heals very quickly. I see my GI every 4 months. We always do blood work and check all levels. Good idea to keep on top of things as our systems can whack out other systems in your body. Being a mother of two with all of their soccer, dance and golf, I have to remember to take time for myself and do some yoga or have some zen time otherwise I find myself wound up and that can also accelerate the symptoms. Anyhow – just wanted to say “good for you” keep positive, keep these awesome stories for sharing going, this can be a lonely private journey even with a room full of people.

    • Hi Trisha, thank you for sharing all of your experiences and your tips. Sorry that your bouts with pouchitis have been frequent – I hope the probiotics help. Have you ever tried VSL#3 probiotics? I believe that it’s shown positive effects in staving off pouchitis. Just a thought. And good for you for carrying on with your motherly duties in spite of everything. All the best to you!

  19. Cyndi

    Hi Rasheed, thank you so much for sharing. I have my reversal surgery in 2 weeks. Everything I feel inside and every physical obstacle I have, you expressed better than I ever could. I kept a full time job as a nurse practitioner and taking several weeks off after my first and second surgery, it kept me somewhat normal, less of a psychotic angry bitch I guess. In my heart, my biggest loss is myself. I haven’t been able to exercise for a long time due to frequent leakage problems with my ileostomy and when I exercise it is worse. I lost my old self who was happier and had more fun with my family. I remember lying on the couch in severe pain and watching my little 4 year old slip on the snow and fall but unable to get up fast enough to catch her as she was running to me after a day of daycare. I miss spending time with my teenager, she sits there and rubs my feet when I’m hurting. I miss myself as the caregiver. Recently I picked up making dinner most evenings and that’s very fulfiling. If I didn’t bring home the paychecks I honest probably have killed myself! It’s sad to say but it’s true. The depression drastically got better after I started working. I even started have short love making sessions again, not frequent, but generous of me as my poor husband put it. He often tells me how lucky I am and I sometimes or most times feel that way too, especially how everyone has found me while I was losing myself. Sometimes though, call me an ungrateful person, but sometimes I am so pissed off about the whole thing, why me dammit?! So now I’m getting prepared for my 3rd and last procedure, I hope. I look forward to not just being able to wear skinny jeans again, although my midsection is “pudgy” from the lack of exercise. I look forward to exercising again. Your blog made me cry and laugh, and I also enjoyed reading feedback from others. When my husband tries to be understanding, he really doesn’t know what it’s like, only we do, so reading your blog and replies from others is very comforting, I’m not alone!

    • Hi Cyndi,

      I’m sorry that times have been so rough. I’ve felt that feeling of loss, that wonder of ‘why me?’, and the outright anger of having to go through so much. Sometimes I still feel those things, but it’s much more bearable now. Exercise and work are huge for me, and when I wasn’t able to do either it really knocked me back. Hope your next procedure goes well and you have a quick recovery. If you’re anything like me you’ll be really eager to get back to exercise, but I think it’s a good idea to ease into it. You’ll be the best judge of what exactly that means for you. And hey, a little pudgy isn’t so bad – it can be hard for a lot of people with IBD to gain or maintain weight, so at least your body is working to absorb what it needs.

      All the very best!

  20. Lynn

    Thank you for sharing your story. I also am a runner who recently had a takedown and am getting very frustrated with a lot of mu symptoms and dealing with the “why me” attitude. It’s reassuring to know others have gone through the same issues and same symptoms that I’m dealing with

    • Hi Lynn,

      Just as an update, I’ve been able to increase my running distance over the last several months. I still do occasionally have blood in the stool after I run, but that’s the only time it ever happens. And if I can do a good job clearing out the pouch before I run, there won’t be blood in any of the post-run bathroom trips. I guess what I’m saying is that things can get better, and I hope you’ll see those improvements soon!

  21. Pingback: 4 Questions People Ask Me About Living With A J-Pouch | OstomyConnection

  22. Amanda

    Thank you for sharing. I can relate to some of things that you went through. I went through a 3 part surgery in 2015 and I’m a little over a year from my take down surgery.
    I am having issues with my cuff (remaining part of my large intestine). I had pouchitis several times after the take down surgery and I’m now battling cuffitis. The psychological problems and trying to reach a routine with my pouch is playing havoc on my emotions.

    • Hi Amanda, being able to find a routine you’re comfortable with makes a big difference physically and mentally, and I hope you can find a routine like that soon. Thanks for reading!

  23. Chloe McCrae

    I just want to say Thank You for this information

  24. Pingback: Rasheed Clarke Answers 4 Common Questions About Living With A J-Pouch | OstomyConnection

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  27. Paige

    I go into my “take down” surgery (reconnecting my small intestine to my j pouch) next week. This article gave me absolute life, and more importantly…hope.
    Thanks so much.

    • Hi Paige, so happy to hear you found the post uplifting. I’ve been lucky enough to make even more progress in the years that have followed this post, and I hope you will too. All the best next week and beyond!

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