Hi All,

I haven't posted in such a long time. I've been doing fairly well the last couple of years. I had a one step J-Pouch surgery in July of 2004. I remember having Pouchitis maybe 3 times in that first year of having my pouch, and then it seemed to go away and things were much better. Well, I started noticing a lot of bleeding (even some clotting...is that normal?!?!?) about 5 weeks ago, and began having this awful gnawing, burning type of pain. I went to see my gastroenterologist, who checked me out and said it was Pouchitis. I wasn't too worried, because as I said, I've had it before. Took my 10 days worth of Flagyl, and waited to begin feeling better. It didn't happen. Now, for the last week and a half or so I have begun having this horrible gnawing, burning pain again, and the bleeding is back. I called my gastro doctor back, and he suggested I go in to see my surgeon again, as he thinks I may need a revision. I had no idea what a revision was, and when the word surgery came up it kinda freaked me out . I go to see him on Monday and I guess I will know better then what will happen...

One other thing that has really been bothering me lately is pain from adhesions. My gastro doc said my stomach feels really hard, and that it is adhesions that have formed since my surgery. I get this weird pulling, cramping type of pain kind of high up behind my scar (right where he said it felt hard), and sometimes it doubles me over. I asked my gastro doctor what can be done about that and he said nothing . He explained that cutting it out only creates more scarring. So am I just expected to live with this discomfort then?? I mean, is there nothing that can be done?? I intend on asking my surgeon about that on Monday as well.

Thank you all for listening. Seems like things were going so well, and now I feel really rough and kinda like things are falling apart, UGH .

Just wondered how many of you have taken a round of antibiotics that didn't cure Pouchitis, and if anyone here has needed a revision?? Also, do you have pain with adhesions as well, and was there anything they could do for you??

You might try Cipro. 1500 mgs per day [ 500 mgs X 3 times per day ] for 3 days, then 1000 mgs per day for 14 days and finally 500 mgs per day for a few days and then 250 mgs per day for the final few days. Some find that this tapering helps.

If you take a probiotic like Culturelle...take the Cipro first and wait a few hours before taking the Culturelle.

Hi Ashley,

Did your GI actually do a scope on you? If not then I think you should ask your surgeon about getting one when you see him on Monday.

The fact that you are bleeding indicates that it could be cuffitis rather than pouchitis and this would need a different course of action such as 5ASA's (Canasa suppositories or Cortifoam could help) and I certainly wouldn't go down the surgical route until this has been confirmed.

As for the adhesions, well unless they have become very problematic (ie: causing bowel obstructions) then most doctors won't operate. However, if the pain is really hindering your quality of life then I think you should at least ask your surgeon about getting them freed off. I've had several operations for adhesions and the last time my surgeon used Seprafilm sheets and Seprafilm spray to try to avoid them recurring. Perhaps that's something else you could mention to your surgeon?

Good luck and let us know what your surgeon says.

Shell

I agree with the cipro course and the longer time with weaning. That usually helped my daughter. But the bleeding does sound like it is cuffitis and the cortifoam or canasa suppositories are the only things that help for that. A scope will indeed let you know if you have cuffitis but from your symptoms that is what it sounds like. My daughter would complain of burning feeling when she was diagnosed with cuffitis. After her course of cortifoam, the canasa suppositores hurt to put in so she used the cortifoam, she started taking pentasa as a maintainence drug to prevent the cuffitis from returning. That has worked well for her.
About the adhesions, someone here got some kind of massage therapy that helped to break up the adhesions and was successful. Maybe some heating pad and some soft massage yourself would help.

Agree with all of the above. However, ask for a surgical consult regardless of what your GI says. If you are having that much pain, the risks of surgery may well be outweighed by potential benefit. Plus, they now have adhesion barrier films to hopefully prevent formation of new adhesions in those who are prone to them.

Jan

Thanks so much, Everybody!! I was going to go in and see the surgeon today at 1pm, but I think I am going to reschedule for next week, after I've had time to finish this second round of antibiotics. My Mom said I should give the Flagyl one more round since my gastroenterologist called them in for me. He also has me on the Canasa suppositories. I have to go pick everything up tomorrow, it has been a whirlwind of a weekend and I haven't been able to get to the pharmacy yet.

Jan, I had some Ob/Gyn type surgery in January of 2006, and the doctor removed sooooooo much scar tissue. He showed me the before and after pictures and I could not believe my eyes. That stuff sets up quick and seems to spread like wildfire!! He mentioned that he wrapped my ovaries (which were tied down...one to my J-Pouch and one to my uterus) with some gauze-type material to keep them from reattaching. Is this similar to what you are talking about?? I think that surgery would be worth it sometimes, even if it only afforded temporary relief. I know I feel much better after the 2006 surgery, at least in that one area where the doctor was working. The pain I have now is higher up, where my gastro doctor said my abdomen feels hard. He said that must be scar pain I am having. He's been treating me with Donnatal and Levsin, with little relief. So I'm thinking it is just general pain I'm having and not so much cramping. I plan to talk to my surgeon about this when I go.

Do you think I'm doing right by giving this second round of Flagyl a try before I go in to see the surgeon??

Ashley, I get some very bad bleeding bouts so I'd be interested to know what your doctors attribute this to in the end.

If it is scar tissue, you might look into myofascial release massage (I don't know if I spelled that correctly). It has helped some with adhesions. It's not comfortable, but if it helps avoid surgery, it might be worth it.

I hope you find some relief soon....Lori

i have experienced the same problem as you. flagyl doesnt seem to work for me though the biopsies show pouchitis. so now im back on pentasa, budesonide and prednisolone..

recently the pain on my left side near my hip seems to hurt more frequently, almost everyday i must say, and it travels all the way down to my butt area and upper left thigh. there is also bleeding in my stools these few days.. any advice on this?

Giving the antibiotics and mesalamine suppositories a chance to work is fine, particularly if you are going to consider surgery. You want to make sure that the easy methods have been tried and failed. Plus, it helps the surgeon evaluate you if you have pouchitis ruled out. As far as myofascial release goes, if your abdomen is "hard" where these tough adhesions are, I doubt that massage will do the trick. I would be sort of nervous about that (intestines are softer than adhesions in many cases...).

JOL- It sounds like you are having problems with cuffitis and I would not be surprised if this is causing joint pains (such as sacroiliitis and/or hip joint pain). However, the steroids should be taking care of this.

Jan

Steroids can also cause joint problems. I always developed joint pain while on prednisone and I ended up with avascular necrosis thanks to corticosteroid use.