Recovery From Final Procedure

Oh, and if it helps, I'm currently taking 9 Lomotil per day (Imodium did nothing) along with an antibiotic for acute Pouchitis. I'm also eating a banana, some peanut butter, and taking VSL3 every day.

Thanks again

Wow. So young. You sound very strong and confident. Thats so much to go through. I can't imagine. 

I can't give much advice as mine didn't work out. J pouch that is. But it sounds like they say. 18 months for it to even out. 

You'll get some wonderful advice and answers to your questions. 

After just five months it sounds like your doing very well. 

I wish you the best. 

Richard. 

(no advice. Just encouragement) 

My j pouch is 7 months old but I don't poop as much now. I'm too lazy to keep track of how often I go and plus I've been sick since the 1st surgery. So I have hardly any energy to do much. Anyways, if lomotil doesn't work for you, you could try asking your doctor for a prescription of Colestipol. It's one of the only medications besides immodium that has helped me. Lomotil never helped me, so that's why my surgeon prescribed Colestipol. Except I started having trouble going to the bathroom and it made my output way too formed. So I am trying to slowly ease off it. Eggs also make go to the bathroom less, so maybe you could try that. After an amount of time, I think you will be going to the bathroom less. That's how it was for me anyways I'm sorry I can't be of more help but I'm struggling with my j pouch. 

I'm coming up to the 12 month mark and still have to get up every night.  Always exactly the same time and I can usually get straight back to sleep.  Other than that I'm around the elusive 5 tines a day mark, eat all food, and take loperomide twice a day (and psyllium husk when I have lots of fluid)

Basically I find I need a bathroom visit every 2to 3 hours, but I can hold 2 to 3 hours with increasing discomfort.  I could easily go 12 to 15 times a day though.  

What I've noticed is that having a sore a butt makes for more urgency/frequency and discomfort.  The more bathroom visits the more irritated the butt is.  It's kinda of a self fulfilling prophecy, the more you go, the more you need to go.  I don't think your doc should make any promises like that, but if your not bleeding or in significant pain, you may well be on the right track.  Are you sure the lomotil is working for you though? 

Almost a year out and typically 3-5 times a day, not at night.  Mostly 4 times.  I only take Benefiber once in the morning and Immodium at bedtime.  On rare occasions I will take 2 Lomotil if I am working a long day doing home visits. 

Thanks to everyone who replied so quickly! Seems like a lot of people had similar experiences. Mysticobra, if you don't mind me asking, when did your J-Pouch fail and what did they do instead? My doctor has been pretty confident that my pouch will stretch and be fine, but I was wondering what other alternatives are. Does anyone know the science behind the different medications talked about above (I thought I read a while back that Imodium and Lomotil where similar, but I've not heard of Colestipol and Benefiber)? Thanks for all the encouragement!

Fibre such as psyllium husk and benefiber are basically mechanical slowers.  They act as a sponge to soak up fluid thus slowing your output as it's more firm.  It's usually a good idea to use some soluable fibre and some medication like immodium/lomotil together as they work 2 different ways they compliment each other.  Personally I find too me suitable fibre irritates me (butt burn) so I only use one dose a day.

I use Benefiber instead of Metamucil.  My surgeon recommended either this or Metamucil Clear.  I believe because in some people it can cause less gas.  I had used Benefiber for years when my GI thought I had IBS so I was familiar with it.  To me it seems to dissolve well and has no sugar or taste to it, also not grainy.  My surgeon is happy with my results and I just had my first pouchoscopy which showed that things are good with just some inflammation in the cuff but no symptoms of cuffitis.  So far very pleased.  It can be difficult to hold out to use the toilet but helps to expand the pouch, making less trips to the bathroom.  I also am at the point where I hardly ever use Calmoseptine anymore or for that matter, my bidet.  I just use soft toilet paper.  Hope I answered your questions.  It is taking me a while to gain weight but my surgeon said it can take up to two years.  BTW I had my surgeries between ages 60-61.  I was diagnosed in April and had the first surgery in November of that year.  Most likely had mild undiagnosed UC for years but was able to manage it before it all fell apart.

It never worked from the start. It was explained to me beforehand.  My uc was so low in my colon that it would affect the out come. And it did. So after 26 months I had made the decision (finally) to have it removed. I haven't looked back. It will be two years in October since I did that. I feel wonderful. 

I don't regret trying it. But it was not a good experience. 

Your doing well. You will be ok. Your way ahead of where you should be.  That I like to read. And being so young this shoukd not rule your whole life. You can get on with it now. As I have. I'm 3 times plus your age. I've gone on with my life now. I come back here all the time. I like reading successful stories like yours.  

Richard. 

Perfect! This helps a ton. Thanks to all of you (especially Mr Richard)! Glad to know I'm not the only one who wasn't perfect right out of the gate in terms of BMs.

God bless!