Hi, I just became a member of this site and am amazed to see how much useful information is available here amongst the many wonderful memebers involved I'm 24 and had a J-Pouch for 2 years with no problems except for pouchitis twice (no big deal). I've been searching for many hours now trying to diagnose my current symptoms, since my surgeon is busy till next month and don't think my family doctor can help me here.
Here goes. At first I thought it was pouchitis, but my bowel movements have been inconsistent, either liquidy(bad) or solid(good). I've been going to the bathroom a little more than normal, but still less than when I had pouchitis before. I don't really feel pain EXCEPT when I have a bowel movement where I am forced to strain/push (which I always did before to get everything out and NEVER had a problem in doing so since I've been J'd).
The pain now occurs under my belly button, basically at the top of my J-Pouch. I know something is not right, maybe pouchitis, blockage or a stricture??? I don't know. Also, I did some heavy lifting a couple days before I began getting these symptoms and I do drink occassionaly and smoke, but I don't believe these bad habits ever caused a problem for me since I stay active and maintane an excellent diet. Sorry about the long post but any opinions would be much appreciated, thanks in advance,
Jim

The fact that you did some heavy lifting before your pain would indicate you probably strained a muscle or even tore something inside (perhaps an adhesion). The swelling could be causing a bit of an obstruction. Or, it could be coincidence and you have some bacterial overgrowth that has not developed into pouchitis yet.

You can just give it a few days, using a heating pad to help resolve the irritation/swelling faster, or you can call your primary doctor and tell him about your increased output and you suspect early pouchitis or bacterial overgrowth. Then ask for a flagyl or cipro prescription for 7-10 days. He should comply, since this is what your GI would probably do first. If the antibiotic does not begin to improve your symptoms within a few days, then you'll either have to wait for your surgeon or ask to be referred to someone else.

Jan

Thanks for the reply Jan
From reading past posts u r a great assistance to the J-Pouch community. I will try to get a hold of my surgeon ASAP or if things continue to get worse then may pay a visit to the ER.
Jim

Hi
I am also a new member, but have not yet had surgery, however I would welcome opinions
Had UC since 1991, remission from 1992 until 2005. In 2002 developed sero-negative arthritis, I was told this was a side-effect of UC even though my UC was in remission. Prescribed sulphasalazine and steroid injections for worst affected joints. In Aug 2005 after a bad reaction to a steroid injection, my rheumatologist prescribed an anti-inflammatory which he assured me would be ok even though the drug manufacturer did not recommend it for UC sufferers - needless to say my UC returned with a bang! By Oct 2005 my colon was a disaster area.
Finally referred to a GI consultant, sigmoidoscopy, immediate admittance to hospital!
Surgeon wanted to remove colon straight away, GI said drugs could save my colon - went with GI consultant. Surgery seemed the extreme option when I had only had recent colon problems for 2 months! Prednisolone, asocol, and azothyoprine initially worked but it took 6 months to feel anything like normal again. Regular blood tests picked up a liver enzyme reaction so I stopped taking azothyoprine and embarked on a list of alternatives, ended up with mercaptopurine mofetil - a transplant immuno-suppressant.
The Rheumo had been suggesting Infliximab. The GI finally agreed when a gradual reduction in pred put me in hospital again. First infusion June 4th 2007, second infusion 2 weeks later - developed shingles! 3rd infusion scheduled for 6 weeks later postponed 3 weeks (Aug 6th) because shingles still active. Aug 6th shingles still active, high temperature - admitted to hospital for tests. On thurs Aug 9th temp peaked at 42.2C! Diagnosed Legionnaires disease. 2 weeks in hospital. Mycophenolate discontinued, back on 30mg pred, 2.4gm asacol, plus painkillers for shingles (still active after 14 weeks).
It now looks like the only option left is to have my colon removed, the drugs cause more problems than they solve. It seems so drastic when my colon behaves itself with a relatively small dosage of pred!
I have been reading a lot of the discussions on this site and feel that what I have experienced does not come close to the suffering that most of you have gone through over many years.
My questions (finally! sorry for the rambling)are: how long have people been able to stay on steroids without adverse side-effects, and are there any further options before surgery?
Tone

Wow, that sounds like quite a struggle that you encountered with your UC. I had UC for only a few months and nothing at all helped my problems. I even had extreme arthritis like u said. I had no choice but to remove my colon and ever since that my health improved drastically. The first surgery is always the hardest to deal with. Hang in there and hopefully everything works out.
Jim

Tone, I bet you know the answer to your own question. You have already tried virtually every single drug suggested to get off of steroids in the treatment of UC and they either did not work or caused serious adverse reactions.

Basically, steroids are not supposed to be used for long term management of UC, even in small doses. Long term treatment with steroids puts you at risk for irreversible damage to many organs and your bones. Plus, some of these can occur long after you stop taking the steroids. So, the sooner you stop them, the better off you are. It does not matter how long other may or may not have been able to tolerate steroids because it is quite individual and unpredictable.

You are simply gambling with unknown odds.

Jan

Hi Jan, yes I guess I do know the answers. Have an appointment with my GI specialist Thurs 20th Sept, decision day, just wanted to make sure I hadn't missed any potential options.
Tone

My goodness. Your case sounds just like my husbands. He was diagnosed about 1996 and has been on everything except Remicade and nothing helped. He was doing fine and early this year it began flaring again and prednisone was not doing the trick. Went to our local gastro. (big mistake) and he said oh try this new drug...for the life of me I cannot remember what it was..but it was just like Asacol...which we told him caused severe problems in my husband. He waved his hand and said oh, this is different..give it a try and if it does not help, stop and we will try the Remicade. Oh my gosh...it tore my husband up..got his colon so messed up again he was on 80 mg prednisone just to cope..he finally called his specialist in Indianapolis and said..admit me...I want this thing taken out..I can't stand it anymore and I have no more options.

So in Apr. he had his entire colon removed. Then 2 weeks ago today he had his second surgery. He recovered wonderfully physically from these surgeries...had some steroid psychosis the first time and this time..now we are dealing with a stoma that has the opening pointing straight down and we are having to change appliances sometimes more than once a day....by the way..anyone have any suggestions on that? He had no problems with his first stoma. we were using 2 peice Hollister and the ostomy nurse said to change to a one peice with Eaken seals...well hers lasted 6 hours. I put the next one on and it lasted almost 3 days. My husband had to change it and it held only one day and today he changed it twice...it is very frustrating.

Also..sorry this is so long...but he has been taking 9 immodium a day and it does nothing for him so the surgeon prescribed something stronger. Hoping that helps. Has anyone else been prescribed stuff for severe diahrea and if so..what was it? I am just curious.

sorry again that this is so long. He does read these forums so he will see the suggestions.
thank you

quote:

It now looks like the only option left is to have my colon removed, the drugs cause more problems than they solve. It seems so drastic when my colon behaves itself with a relatively small dosage of pred!

Sounds like me...except Pred gave me side effects that were worse than the UC! I had my useless colon ripped out 2 months ago!
Hroberts - Where in Indy did you go for surgery? I went to IU and had Dr.Robb as my surgeon and Dr.Helper as my GI. Both are outstanding. Dr. Helper explained it best about having UC when she said that I was so sick for so long I don't even know what feeling well feels like...how true!
Funny how many people on this site are from the Indy area, there are quite a few of us...
must be the corn
David
Go Colts

I posted back in May I think..asking if anyone was from this area..no one responded. Nice to find someone though. It is my husband who is going through this..not me. But ...he also had Dr. Helper as his specialist and Dr. Robb also did the surgery. We both think Dr. Helper has a fitting name. She is awesome. We also like Dr. Robb...he has been real good about calling us back even when he is not on call on weekends or nights..if we have a problem. So have you had all the surgeries? How are you doing?

I am doing well, feeling better and having loads of energy. I had step 1 in July and am having step 2 November 8th. I am only having 2 surgeries, not 3. I assume you guys are having a 3 step process because you still have your little friend stomy? I use 3 Immodium a day to slow things down a bit and drink Caffiene Free Diet Coke when I want to speed things along. I also use a 2 peice hollister system with a Phoenix belt to help support the pouch. The belt helps keep the bag from pulling down on the flange.
Funny how we have the same doctors...both are great! Dr. Helper and her staff "helped" me get through some nasty times with my sanity intact!
David

Yes he is having the 3 step. He had wanted the 2 step but am thinking he was so sick when he went in, they only removed the colon and made the temp Ileostomy basically. So what all was done in your step one and what is involved in your step 2? Danny has never had to speed things along. He has always had to take lots of immodium. He has had 2 doses of this Tincture of Opium which is for severe diahrea and as fas as I can tell...no change whatsoever. It is still like water. He was up in the night changing the appliance..again. This is getting expensive and his skin is looking bad. We don't know what else to do...he wants to move the 3rd sugery up but gosh..you need time to heal first.
I wish he would watch his diet but he doesn't. I think maybe that would help.
Glad you are doing well. Do you still see Dr. Helper? We were wondering..after all the surgeries are over..are we still supposed to follow up with her?

I had the pouch made in the first step. Now the last step is just closing my little friend up and letting the pouch work. Check out the posts about helping the appliance last longer and helping with raw skin. I have learned alot with these posts. Maybe you can call the companies and get some free samples? I did that with Convatec and Hollister.
I am going back to Dr. Helper after the surgeries are out of the way. I think she will be able to handle all the little problems that come with the pouch.
Hope this helps
David
Go Colts

Dave from Indy,
I'm heathers husband who recently had jpouch made, had UC for 10yrs,Had debra Helper for Gas. doc & Robb for surgeon! After this is all done is it common to keep Helper as follow up doctor? Haven't seen her, she was on vacation when I got sick & recomended Robb to remove colon! I'll have final surgery tenetively Oct 15th or 16th. Have apt. for dye to be put in pouch on the 28th at IPU & see Robb! Glad to know we have so much in common! If I would had known the hell, I would of had mine out much sooner! I really hoped I'd be buried with my colon, now I'm glad it is history!
Danny in Danville Ill.

Hey Dan, I just sent you a private message instead of taking up more of this discussion space.
David