Hello everybody,

I know I have had a second chance in life, but at the moment it's difficult to stay positive. I can't help feeling that I now live from bm to bm. I always feel something is in the pouch/anal canal and I never feel comfortable. It was slightly better in the first 2 months but after a stomach flu I have problems with a fissure, a partial blockage. I'm really trying to see the positive. My stool is around 8 times in 24 hours, I work partially again so not bad. I just can't get used to it.

After just 1 month uc i had a colectomy. My takedown was on May 27, 2019. I never had any problems with uc before this. I know that my life has changed for the worse and i have to learn to live with this frequency of bm's. I also know i'm still in the beginning of the recovery but it's really hard. It would be nice if at least I could live a normal life between the bm's without feeling anything.  I really hope it improves. sorry for my complaining.

greetings

Alex

Original Post

It is still very early days for you. Your pouch is still new at four months and it's trying to learn how to live its new life and behave like a small colon. When my pouch was a few weeks old it was so easy and I thought I got lucky. After two months I got my first bout of pouchitis and everything went downhill for a while: urgent frequency, fissures that felt like razor blades, burning skin, and always a feeling of incomplete BMs and needing to go every 15 minutes. This went on for weeks, then gradually it got better and better. Don't strain or push; you don't want to develop fissures. As your pouch matures and learns how to hold more and more stool, and your wounds and skin heal and toughens up, it should be much, much better. Food choices will be very important now, so don't feed your pouch anything rough, raw, spicy or insoluable. Be patient. You had major surgery and your insides are swollen and still healing. I began to feel normal at around eight months, and now most days I forget I have a j pouch. Don't be discouraged. One day at a time.

Hello Alex,

I'm sorry to hear that you had stomach flu and other problems. I hope you can take comfort in my telling you that my recovery made a substantial leap at about six months, and things kept on improving until 12 months.

Like Winterberry said, it's likely that your j-pouch will continue to improve. As you had a setback early on, maybe you will notice improvements coming a little later.

I found that taking smooth Metamucil (psyllium husk fibre) just before all main meals helped me a lot. I take a generous heaped teaspoon mixed with a small amount of water and gulp it down quickly right before eating – like 20 seconds before. You have to swallow it quickly before it turns to jelly!

I remember having that uncomfortable feeling between BMs too. With time and Metamucil and watching my diet, it definitely improved.

Cheers,
Sarah

 

Hi Alex I had my takedown on May 28. I don't know about the stomach flu as I haven't had that. Are you taking probiotics to prevent pouchitis?

I'm finally getting more comfortable but slowly. I still have to get up at night and things like that. I've been back working since two weeks after I was released. The only reason why I'm not doing good is because I delevoped inflammatory arthritis and it's noticeable because I walk like a grandma at 34 and everyone in my office sees that. I can't make it to the restroom fast. The arthritis started happening after they took me off of all meds and said I was cured. I'm back on them. My liver isn't happy. 

It could always be worse

You've been given some great advice so far.  With your bout with UC being only one month to colostomy, everything going so fast, it is hard to get your head around all the changes. Its hard to know what is a new "normal" and what just isn't right.  I had that issue too, only mine was a few weeks longer than yours between UC diagnosis and surgery.  It is a huge change, that I wasn't ready for.  My former GI said "I'd be cured" with the surgery.  Never warned me about what a j pouch is like.  I really understand how you feel.

I would try to slowly add some soluble fiber to your diet.  This will not only help with thickening (less bowel movements), but also with transit which should help prevent straining. Hopefully, it will help your gut feel like it emptying completely without always feeling something in the anal canal. Also if you haven't already talked to your GI, I'd do that and have him/her check for pouchitis or inflammation. He/she might recommend something you can do for the constant feeling in the anal canal as well.

Once again, your pouch is fairly new.  It took me a long time to get to my new "normal".  I found a new GI who helped me with medicine to get to that place. Don't give up trying to find some answers.

Thinking of you!

First of all I want to thank everyone for all the nice words and advice. It really helps me to understand this phase of recovery and gives me the energy to move on. I think the combination of my current problems and the mental aspect of the recovery has knocked me down, but.. not knockout.

Winterberry: thank you for the encouraging words. I try to live by all the advice I found on this great site. I take probiotics every day, pay attention to what I eat, drink enough water, don't eat spicy food, make sure I get enough exercise. So a setback is then difficult to process. I sometimes forget that time is the best medicine.

Sarah: I took 4 Imodium and psyllium fiber until I got a partial blockage. I currently use 1 or 2 Imodium per day. I wait a little longer with psyllium until I know for sure what the reason was for the blockage. I am glad that I am not the only one who has this annoying feeling that something is always "there" and that it's not due to the construction of my pouch.

Davina: In the hospital I told myself that I have reached the bottom and that I have to do everything to get my life back. So I sometimes feel guilty about complaining, because I know that it can or could be much worse. I hope you recover well.

Still Standing: mentally it's  very difficult sometimes. I had a socially active life and i'm afraid I can no longer do the fun things without worrying, going on vacation, going out to dinner, get drinks in the pub, you know just enjoying life. Next week i have a appointment with my GI for a scope. I will give a update after my scope. 

I just need a few good days in a row without any problems to see the good things again I think. Thanks again everyone.

greetings
Alex

It takes a while to feel better.  I was diagnosed with UC in April 2015 and had my first surgery in November that year.  So I barely got used to even having it, just one crazy flare that didn’t get better, even with biologics.  It’s been over 3 years since takedown and I have resumed most of my activities and more.  For me, it’s a little different because I am semi-retired, but the days I do work I take Lomotil to help get me through and I know where all the bathrooms are along the way since I am on the road.  I have gotten pretty good at holding it in longer, although it can get a little uncomfortable at times.  I occasionally have a little leakage, very rare.  Like others have said, give yourself time.  It’s a big adjustment for sure.  I will be 65 next month and go on 20 mile bike rides and climbed the Summit of Mt. Washington.  If I take my Lomotil and empty my pouch before I start, I have no issues even with eating and drinking along the way.  There are times when my diet causes more BM’s but for the most part things are good.  Bad timing with the flu, for sure.  Things should improve for you as you adjust!

Hi Alex, as everyone has already said early days for you. Things will get better, but not overnight. I think the best thing you can do is to go easy on yourself.  As new as your pouch is, eight BMs a day isn't really that bad. I mean, if you think about how many time we pee everyday, then the BMs really aren't that bad.   You just need to take that first step back into your active life style. Yes things will be different, but so what. I've had my pouch for 16 months, May of 2018. It hasn't all been rosy but you know what, I haven't regretted my pouch for a minute. My UC was fast and furious. Once it started it never stopped. This is just part of your journey. No, not the best part but a part we've all been through. The first months of not knowing what's normal or what to expect are hard. You've got this. Look what you've already been through. Just keep coming back here if you need advice. There are some pretty knowledgeable pouchers on this site, the rest of us are very empathetic. Lol Good luck Alex. Keep us up to date.

Aimee 

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