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Posted 5/27/2005 1:37 AM (GMT 0)
Hi all,

My name is Janene. I have Ulcerative Cloitis. I have been trying medication after medication with no luck and have decided that I want surgery. I just got out of the hospital from a bad flare. I have 2 kids that need me to be healthy. And apparently the only way that will happen now is if I give up my colon. I have looked into the j-pouch and just don't feel like it is for me. I Have been looking into the BCIR. I would like to talk with someone else who has had experience with this. I have read testimonials but would actually like to have a conversation about it. I am scared. I just am sick of hearing well we can try this or there is a new med coming out. Everything that we have tried has failed or made it worse and I am looking for peace. I don't want to try a med and it work for a few months and then fail and have to end up back in the hospital. My 3 GI doctors keep saying well we can try this or we can try that. NO I am finished trying.

Sorry for letting it all out I just want to talk to someone who can relate to how I feel and might give me some insite into the surgery.

Janene confused

Posted 5/27/2005 3:01 AM (GMT 0)
Hello Janene,i have had my pouch for a little over a week,I havent had any problems with the surgery,but it will take some time for my pouch to function normal. i would say choosing the BCIR over the J-pouch would be like choosing a 75 pick up truck over a new Ferrari.The BCIR is my first pick if my J-Pouch fails. Just my opinion ;)
Posted 5/27/2005 12:02 PM (GMT 0)
Hi DePiro,

I cannot explain my concern with the j-pouch. Call it a gut feeling. I just can't shake the feeling that it would be a mistake for me. And my GI's are afraid it wouldn't work for me either. Basically because I started out with proctitis and it is now left sided. From what they say you have to leave a little of the rectum muscle attached in order to do the j-pouch. And that can still flare. And it also still leaves you open to colon cancer. Even if it is very so slightly. When I was in the hospital last week someone that worked there heard I was in and he came to talk to me. He said he has the pouch. He said he is happy but does have accidents and does go alot more. I am sick of going all day. I don't want to go anymore. I have also had the chance to meet with a fellow church member who has had the surgery j-pouch for 10 years. He said the same thing. But he was also just in the hospital because that litle piece that has to be left did flare and made him extrememly ill. I am sick of being ill also. I want to spend the rest of my life off of meds and somewhat healthy. Sick of dehydration and anemia. And I don't want to worry about that little bit flareing in a couple of years or months because with my history it is very well possible because my rectum is completely enflamed all the time. Beside the side affects the only thing that has kept me normal at all is the pred. and I am not taking that anymore. To many side affects. They say I need to be off of the pred for 6 weeks so the surgery can be done in one step.

Sorry to lay it all out there but I must say it felt good to get it off ofmy chest. By the way I see you are in Debary. I am just west of Orlando. I can't believe how many people have to deal with this. Befoer I was diagnosed wtih UC I had no idea how many people actually have been through hell.

Janene 

Posted 5/27/2005 12:33 PM (GMT 0)
Yeah not too far from ya,..anyway just wanna say that I had proctitis myself,my flare was as low as it gets.My surgeon told me that he would leave 1 inch of the rectum in ,he never said anything about it flaring again,but i know pouchitis is possible which is possible with the BCIR also.There is 10 day antibiotic cure for that.The passes can be slowed down with Lomotil,average aafter 6 months is 6 per day and 1 in the middle of the night.(seems  easier than using a catheter 5-7 times a day)

Also I do know that they can scrape off the ulcers of the rectum too,you would have to talk him about that. Also more than 1 opinion from a surgeon is also a good idea,if you would like to email me I could give you the # of the surgeon that did me in Orlando,I think the consultaion would be worth it for you because there is no turning back on your choice.

Posted 5/28/2005 3:54 PM (GMT 0)

DePiro,

I'm visiting this site from the UC forum.  Just curious about your story...why did you get surgery?, was it your doc who recommended it?, how did you finally agree to the surgery?...and anything else you can tell me. 

My UC is getting worse, and my doc isn't too happy.  If the pred. I'm going on doesn't work, then we'll have to be more aggressive.  I'm with Janene...I'm sick of running to the toilet, but most of all, sick of being in pain.  So, I thought maybe you could share your story because I might relate.

Thanks,

Jessie

Posted 6/26/2005 9:28 AM (GMT 0)
Hey guys,
i just thought id throw in my opinion here too. I agree with Depiro. BCIR really is a last resort, as described by everyone i talked to, including my surgeon and gastro at U of Chicago. Usually they do it as an alternative to an ostomy. And i wanted a permanent ostomy when i made my decision for surgery because i didnt ever want to go to the bathroom again. I had been misdiagnosed with IBS for 10 years, so by the time i got treatment it was out of control. Now UC generally starts out as proctitis for everyone, and spreads however it chooses. I ended up with pancolitis. The severity of your proctitis doesnt matter in the slightest unless it has damaged your rectum irreparably, in which case they just dont leave the stump at all. This is how it was done up until the last 10 years or so, and plenty of people had the surgery with no problem. I had severe rectal disease myself, but it wasnt even a problem since the UC is just in the lining, not the whole wall. They scrape the lining off and leave the stump. You get biopsied once every two years, but your risk is very low indeed of having any issues. It sounds like you have been talking to some people, but mostly those who have had issues. Most people go through the process just fine, just like Depiro, and have no issues at all. My surgeon provided tons of people who had had the surgery, with differing experiences, and not ONE of them regretted it. Even those with 8 bms a day, you have to realize that if the disease is bad enough, 8 bms with no pain, no urgency, no blood is heaven. And the j-pouch is usually the first thing tried because it has such a high success rate, and there are always backups from that. But you dont want to regret not trying everything first. They convinced me to give it a try. I have had alot of problems, but i dont regret this for one second. I get reconnected on Tuesday the 28th, and its been a long road, but, for me, which is the only experience i can go off of, i was a reluctant but very satisfied customer. I do understand never wanting to deal with this again though, and i do hope that whatever decision you go with you are very happy and healthy. Good Luck.
~Eileen
Posted 6/27/2005 11:45 PM (GMT 0)
Found this site last week and I hope I can be of some help. I had a j-pouch for two years and suffered with urgency and frequency. I do not regret trying it because I never would of known. Anyway, I converted from a j-pouch to a BCIR, 14 years ago. I am living life to the fullest. I am on absolutely NO medication and eat everything but apple skins and mushrooms. I intubate (drain my internal pouch) two to three times a day and very rarely (if any) during my sleeping hours. I feel like my plumbing is as good as any one who has not fought Ulcerative Colitis. I tried medication to fight my disease prior to my surgery was missing tooo much of life and was tired of the medication side effects. In my 40's, I needed a new hip as a result of Prednisone. I know I am rambling so please email me at [email protected] for any questions on the BCIR.
Posted 6/29/2005 9:49 PM (GMT 0)

I got so excited when I heard you all talk about BCIR, I got on the web site and e mailed someone about it and now I am so dissapointed,  They wont do it if you have crohn's.  I was really thinking about having this done, but now I cant.  I havent heard why they cant do it in crohns people, anyone know?  I guess I am stuck with my bag, but thats ok because I have my life back. I just thought it would be nice to not have to have the bag and not be sick. 

I'm glad some of you can get this done. Good Luck to ya !!!

Posted 6/30/2005 8:57 PM (GMT 0)
Hello to all;
I am new here. I have 18 years experience with a very successful j pouch. I have never had pouchitis, or any of the problems you read about. I did have a hidden abscess 8 years ago, it was repaired and I have been fine since.
I do have accidents occassionally when I sleep, I take sleeping aids and I eat junk late at nite sometimes.
Simetimes I have urgency but can usually control it til I get to a bathroom.

Flip side, my 18 year old son, Chris, has had nothing but problems with his j pouch for 10 months, he ended up having it removed a few weeks ago. He is healing but he does not want a permanent ileostomy. He will not be able to try a continent ostomy for almost a year due to how ill he has been, narcotic dependency, iron deficiency, extreme weight loss and overall poor health. He is 5'10" and weighs 108 lbs! He used to weigh 145 2 years ago.
He started out with a diagnosis of proctitis, soon after got throat ulcers, then diagnosed with pan colitis, emergency surgery was within 15 months of diagnosis.

I on the other hand, suffered for 12 years with UC, determined not to be scarred fir life until I had another life to be responsible for. Irecently had my scar revised(vanity sucks), it looks much better, even at 52 I care about the way my body looks to me.

Any way, I am willing to talk to anyone personally about pros and cons of j pouches and ostomies. I would like any info that anyone can provide on BCIR.
Chris will probably have it done in Ohio at Cleveland Clinic. We have consulted there in the past and have allot of confidence in the colorectal team there.
holly in florida
Posted 6/30/2005 11:17 PM (GMT 0)
Hello Holly,

I cannot give you to much information on the BCIR because I have yet to have the Surgery. I am leaving for St. Petesburg on the 21 for surgery on the 22nd. YIPPEEEE! Sorry, I have been wanting to feel better for 2 and half years now and I think I finally will. Have you contacted the BCIR institute? They sent me all the info on the BCIR before I made my decision. I got a DVD showing great diagrams of what ir actually looks like internally, and they also put my in contact with a few hundred patients that have had the surgery. They sent me a list with their names, numbers and some email addresses. I have spoken to one right here in Clermont a few times. I am in Florida also. Alot of people do are not able travel and decide against the surgery. I am fortunate to live about 120 miles fromt he hospital, so it will not be that bad for me. If you have not contacted anyone go to www.bcirostomy.com and contact Susan Kay through email. She is great. Hope this helps. Take care and good luck.

Janene

Post Edited (Janene) : 6/30/2005 5:22:52 PM (GMT-6)

Posted 7/7/2005 1:22 AM (GMT 0)
Hol from Florida - I understand your confidence in the Cleveland Clinic however I noticed you live in FLorida. Since you are so close, you should get a consult with one of the surgeons performing the BCIR. My surgeon was Dr. Pollack in St. Petersburg, FL at Palms of Pasadena Hospital. You can read about him and another surgeon, Dr. Rehnke at www.BCIRostomy.com. I hold the whole team in such high regards. If you want to meet some other BCIR folks, they also have a message board at this site.
Posted 2/1/2009 11:30 PM (GMT 0)
I had a Brook ileo 30 years ago after my colon perforated because of uc. I had the Brook (external bag) for 10 years, 20 years ago I had it converted to a BCIR. I had to have it "redone" 3 times over the past 20 years but would have it done again tomorrow if I needed to--what an improvement! I have raised a child (adopted), remarried, have a fulltime job which involves public speaking and have travel abroad successfully. I didn't have to make a choice about when to have surgery or what kind to have since mine was an emergency situation. There are options out there and I wish those who have to make that decision the best--it's a tough decision--there's not one choice that's best for everyone.
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