i live in ma. and too go to boston. i had surgery 2 yrs ago and still 10 + times a day. i take the dto also and lomotil 2.5 mg on the lomotil i take 2 pill 3 times a day and 3 pills at night.try cipro or something like that i been on it for also the whole 2 yrs now.the gas is crazy so try to sleep on right side i feel better on that side and sometimes pass gas that way.oxycodone try too for the pain and too slow down bowel.i to never leave the house now. this was the worst idea i have ever done and completey loss my mind.im29 yrs old with 2 kids and i cant do anything with them.this sux.they tell us that we will get better 1 day but they dint have to live like this.oh i also take liquid imoduim at bed time that helps to a whole cap fill so thats 4 teaspoon or table i forget i just fill up the cup.if you want to talk email me back at ben_vallante@yahoo.com and we can talk more.i hope you feel better.

Thanks, sent you a private reply. I hope this gets better soon. I have a strong loving husband who keeps helping me to want to keep fighting to gain some control back. Some days I don't even want to get out of bed. I am dreaming of the day when I can take a visit down to see my Mom and Dad who live an hour away.

Botox will treat the fissure, but not the stricture. Have you been dilated? Anal stricture definitely could delay your recovery and adaptation. Some people have very stubborn strictures that require surgery.

Jan

Had both dilation and Botox in May. That is when the incontinence got really bad. Thanks for the suggestion though, at least it shows I'm doing all I can.

Jpounds,

I am so sorry to hear that 4 months out you are still experiencing this. I also had a horrible time, and not to make you feel worse but rather to be honest with you, it was a good year before I felt that life consisted of anything but pain and poop. It was very hard for me to hear of others who were doing great and flourishing. I thought there was something wrong with me. I was a few years younger than you and my life seriously stopped.

I tell you this not to depress you, but to tell you that some people take ALOT longer than others and doctors fail to mention this. I didn't have a choice with the surgery as my colon had basically exploded, but I thought it was the worst possible thing that had ever happened.

A few things helped me turn the tide. It sucks to be the small percent who doesn't immediately thrive. But I did notice that after a year things got alot better. I started taking pepto Bismol which helped alot with the BB and gas! I also found a compromise with my narcotics that slowed me down but didn't back me up. I incorporated VSL#3 and made small changes. I will never be the j poucher who can run around, work out and eat veggies or nuts. That's just the truth. But anything was better than where I was.

I am really glad you have a loving and supportive partner and children. Somedays, you get the grit to get out of bed because you love them enough to want to.

I really am sorry and wish this wasn't happening to you.

Thanks Tammy, it's nice to know I'm not the only one. Sometimes I feel like a big baby when I STILL have to rely on others so much. I am hoping the PT will help me to longer trips to the bathroom and less time in it. All of us experience challenges and have to find ways to cope and retain hope. Thanks again.

I don't have a jpouch but do have FAP, so I will comment. I had pouchitis symptoms and was treated for it until I had my scope at 5 months post op. Like you my pouch was pouchitis free, very rare FAPers get pouchitis anyway, think 1% do. The minute I go off antibiotics all my symptoms come back. I have basically been diagnosed with bacteria overgrowth in the small intestine. So I am on antibiotics. I found out probiotics make me 10x worse so I take a low dose of Cipro for now then moving onto Xiaxfan (sp) for maintenance.

It seems like your dose of Tincture of Opium is too low, so that would be easy to fix. I was on .6ml, this sort of equaled about 14 drops. The opium did help. Though it sounds like your problems go way beyond what a medication can solve. I just had my pouch disconnected after 18 months of incontinence, nowhere near as bad as yours. I was able to function, work part time travel but it was affecting my life style so I have a new end ileostomy. I will probably make a separate post giving my experience after a bit more time but it is great not to have have a sore butt all the time. While the frequency did get better with time the incontinence did not and that for me was a "deal killer"

It took me almost a year before my BMs slowed down. One thing I found is that sugary foods really made diarrhea worse. Once I figured this out, I tried to eat more bland type food - bread, rice, potatoes, bananas, etc. I took 2 lomotil every 4 hours and also fiber pills. Keep your chin up....it will get better. It just takes some of us longer. My doctor didn't understand why I was having so many issues.

My doesn't understand why I am having such a hard time. That's kind of why I put this question out there. I needed to know if I really was over the top in terms of my slow progress. Thanks for ALL the responses. Taking each day one at a time. Sometimes each hour.

I know what you are going thru. Took me a good year to get back to some kind of "normal" . I spent many a night where I slept on top of bedpan. I imagine you have tried, but will ask anyway, have you tried changing diet? I have had to go to a completely sugar free diet. Absolutely no sugar, no high fructose corn syrup, no brown sugar, etc. Cant even have things like canned peas, because they have sugar added. I have to really read labels and check for sugar added, to see if I can eat it. And have cut out most all wheat products. Doing those two things have made a night and day difference for me. It is really tough to do, cutting out every last bit of sugar out of the diet. But I now can see first hand what the consequences are if I dont, ie, diarhhea, and sickness. Just a suggestion to try if you havent already.

Vanness,
I read your blog. Are you still struggling with th BCIR? Some days I get so frustrated. My doc in Boston has nothing more to offer me for the intense rectal pain, spasms, painful gas, and frequency. I had asked my surgeon if she did BCIR, She said no and said as far as she knew, only the Clevland Clinic doc did it. She recommended against it saying it would be difficult if I had complications to have treatment locally. When I read about it online it seemed like a good alternative. Now I am stuck with the jpouch or could opt for an end illeostomy if the incontinence doesn't improve. Like you , I do not want to live with a bag, but right now I have no life. I have ways to contribute to society from my home but I want to enjoy life again.

Really low tonight. Hopefully tomorrow will be a better day.
Jacki

There are a lot of people actually that do Kpouches and CIRs (like the BCIR) Don't let a local surgeon tell you not to have it. I had everyone left and right tell me not to but they all couldn't give me one reason not to. My issues with the BCIR are nowhere as bad as my friend who had a jpouch about 2 months before my surgery so I guess I have it better. No colon removal surgery is perfect IMO. There is always some set of issues. My pouch is pretty good though here and there. I have been rotating antibiotics but I am continent at least. I go to the bathroom 2-3 times a day depending on how much I pig out. I always sleep through the night, wake up in the morning, get hydrated and drain my pouch around noon. I usually go one more time then irrigate it out at night and repeat.

Anyone can help you maintain the BCIR or kpouch if they can scope a butt they can scope a pouch, hell you don't even have to be asleep for scopes.

Again, keep your mind open and do research. That is what I did and I went for what would give me a better quality of life and the bag was not an option for me, I refused it so the BCIR is what I got. The jpouch was an option but a risky one since I had rectal cancer they would have had to remove the whole thing and sewn it on to a small area of skin. I was told I could have continent issues and a longer recovery. I did not want to be going through surgery after surgery if the thing didn't work out so I opted not to get one. I think I made the right decision every day even if I have some gas that annoys me in my pouch.

Feel free to msg me I will be blunt and honest about life with one at any time ;-)

Travel over to the kpouch forum on here, there is a master list of surgeons that do these surgeries. It is not just the CC. I picked the BCIR and the Palms of Pasedena since Rehnke does A LOT of these. Thousands compared to someone who has done maybe 100 in a lifetime. I wanted it done right and the care I got was amazing there. Was a great experience as hard as it was.

The Quality of Life association is having their anuall conference in Florida, and the BCIR program has been doing conferences in different states. Perhaps see if they are close to you to go to. Also if you just email Susan Kay at the Palms in Florida she will send you information and talk to you on the phone. Out of all my doctors they are the best, they call in scripts immediately if and just been great from the start.

Nobody should suffer and everyone should have options. It's your life.