Do any of you who are well into your lives as j-pouchers remember how much additional quality of life improvement you got as you moved into your 2nd year, 3rd etc..?? Without doing anything necessarily fundamentally different other than just adapting and adjusting the best you could?

I'm post-takedown ~9 months. I do very well during the day. I do not so well in the evenings. I have a pretty limited diet.

I'm still far better off than my UC days and even better than with ostomy appliance but far from where I'd like to be.

Happy weekend everyone........

Speaking as a K poucher and not a j poucher I know that by the end of the first year I was living on a cloud of happiness...it took 9 months for the 3 surgeries but once it was all over life slowly went back to normal...my pouched stretched and started taking over the functions of my colon (absorbing liquids and nutrients) and I got my strength and energy back...I'd give it a year if there are no major problems and by 2 you should be feeling great...That said, do your kiegels to keep that sphincter strong and support your pelvic floor. Suppliments are rather important at this stage...you are coming off of a long period of stress, illness, biological transformation and the loss of a major organ...you need to support all of your systems and a good multi-vitamin + minerals couldn't hurt at all. At this stage you could also ask for some blood work to check your iron, D, Calcium etc and make sure that you are getting everything that you need...it helps a lot.
Sharon

thanks for the thoughts... I have been doing the daily multi-vitamin and I thought about the bloodwork that you noted. As it turns out I have to get a new primary physician anyway so I think I'll have my new primary run a full bloodwork.

You just wonder if there is a predictable time period where you need to escalate matters if you still haven't gotten to a good stable place. I gather though that there isn't a fixed date/time period. thanks again for chiming in !~!

What do you consider specifically as doing well and not doing well? Everything is relative. For what it's worth my progress curve leveled off in terms of function at about a year and a half. I saw some slow improvement over the next couple of years but at 1.5 years I was mostly there.

At 9 months I'd consider 8-10 times a day while on some immodium and fiber, including a couple wakeup trips overnight, to be doing pretty good.

Newpouch,

I am about where you are and have struggled through numerous issues to get here (pouchitis, stricture, cuffitis).

I am FINALLY feeling some relief after first trying anucort suppositories and now on canasa suppositories. I honestly thought I was going to pack in in more times than I can count over the last 6 months.

I too think at this time if you are going between 4-8 times a day and once or twice at night you are doing well. I think if you are pain free, this is another huge accomplishment by this stage.

After 8 REALLY long months, numerous tests, and surgeons prodding and poking up my butt, I am finally enjoying freedom from struggling to empty my pouch, constant, severe rectal pain, anal irritation, burning, itching, *****ers up my butt feelings in addition to feeling like I am passing broken glass when emptying my pouch.
After several months of this and three exams/pouchoscopy/dilations later (last visit was dilation and biopsies under anesthesia), I finally feel human and pray it stays this way.

So, if you are not experiencing a lot of discomfort or pain, you can expect your improvement to continue slowly but surely over the next six months to a year and can use bowel slowing meds also to help ease this period.

good to hear you doing better kjeane... I know you have had some struggles.

actually my issues of the past month haven't been frequency. I'm just having trouble getting control of the stinging/burn down below. I cake on 2 or 3 different barriers but it's a little further up inside than is accessible to me. Hearing you talk about suppositories.. it feels to me that is the area where I am having my issues. You have me thinking maybe I should ask doc for a canasa prescrip. (I never did well with canasa back in the UC days though)....

again, good to hear you're doing better !!

While not perfect-my bathroom trips are higher than I would like, I am very aware that my quality of life has improved drastically from my UC days. My first year with my jpouch was rough, but I learned how to cope emotionally and getting through the butt burn.

Now I am not taking any medications, eating what I want ( and sometimes paying a price).

So all said, life is good.

Mike,

It is worth a try for the canasa. If your irritation is in the cuff, which it sounds like it is, this is most likely UC in the remaining cuff and it feels very different than the normal, occasional butt burn you get with the pouch.

See how you make out. You can always more to cortifoam or anucort if needed. I know I was beyond miserable and cried many evenings when the burning and pain were so intense that the only thing that helped was warm baths before I got on the rectal meds. Many nights I remember telling my husband I so wanted the pouch OUT now and no offense to our surgeons, but they have no clue how miserable our suffering can be.

Hi,

My trick is to use babywipes for every BM. It works. You have to use them and not toilet paper. Try it for a week, you will feel the difference. Since I've been using them (10 years now) my butt is much much better.

Also, when I have trouble passing stool, I use an anal catheter. I helps has well.

So again, I encourage you to try the wipes (and bring them everywhere you go) and use them everytime.

I go 8 to 10 times a day and 1 to 3 times a night. I can't eat corn, nuts, raw veggies and mushrooms anymore because it blocks my stricture still.

good luck

Caro

In addition to the above great answers I'm a big promoter of cleaning after every BM, when possible, with water. I have a hand held sprayer by my toilet bit think bidets and seats are better.

I'm at 13 months and am still having problems which I now believe I've been having all along. I wish I'd have a pouch scope earlier than waiting the suggested year. Kjeane has had several and is now feeling better as they've been treating her problems. I have cuffitis and probably pouchitis at the same time. I was given one week of flagyll a few months ago and noticed fewer BM's for a while. A few months later I was given anucourt, like kjeane, for only 2 weeks for cuffitis that was diagnosed by my surgeon's scope.

I've gone back to my GI and hopefully he'll put it all together and treat me so I'll get over all of this. I have to take pain meds as my BM's cause pain at my cuff plus I have adhesion pain as well. It sounds like your pain is generating from the cuff as well.

This is a long way of saying I wish I'd gone in and pushed more for answers at 9 months. I had a barium small bowel series and kept talking about my pain. All that got me was assurance the adhesions were not interfering with my small intestines and norco prescriptions.

With a sprayer or bidet you can direct the spray to clean up further inside and that helps some with the cuffitis pain.