Hi All,

Hopefully you all can help me out with my tale of complication upon complication. I had UC for 11 years before I finally resorted to having my colon removed in Nov 2004 with a temp illeostomy. My surgeon had to actually make an "S" pouch rather than the "J" because there was not enough small intestine to work with. After I was home I was still in a great deal of pain. I would go back to the surgeon for follow ups every two weeks as scheduled and tell him I was still in pain, something was wrong and he would say, "Oh you'll be fine, I'l see you in another 2 weeks. I was always in pain and stuck in bed on pain meds. Between Decemeber 2004 and April 2005 when I finally had the reversal of the temp. illeostomy, I was hospitalized 5 times for them to investigate what the pain was from as well as for dehydration. So, I was very happy to finally have the reversal because I thought I would be done with all the pain only to find out that all the pain was being caused by a "kink" in my bowel below the pouch. So, now I could not go to the bathroom at all without help from a catheter tube. I am lucky to live right near the Clevland Clinic in South Florida, so that is where I went for help with my situation and was told that the only way to fix this kink is to have the original surgery procedure al over again and since I already had to have an S pouch, there is a very high probability of ending up with a permanent illeostomy and I am not ready for that. I have lived this way with "me & my tube" since then with acceptance and not many problems until now, when pouchitis comes into the picture. In November of 2006 I was diagnosed with a very bad case of pouchitis. I think I had it at least since Sept. if not earlier and thought I was just having a bad time of it. After the pouchoscopy in the middle of Nov. I started on Cipro and miraculously, overnight I was heeled! I mean I felt beter than I had since before the colitis! Unfortunately this only lasted for about a week and then things started going down hill again. After the two week course of Cipro, I went back to the surgeon who gave me another 2 week course of Cipro plus probiotics (FloraQ). I then went to my GI, who also added Entocort into the mix. I started to feel a tiny bit better, but then got constipated (Which is very hard to deal with when your stool has to be lose enough to fit through a tiny tube!), so after a week he took me off Cipro and Entocort and started Xifaxin. I also started taking Darvocet for the pain that had gotten worse. By this time, I was not having to run to the bathroom very often, probably because I have not been eating much, but the pain is constant and gets worse when I get cramps and the situation is further complicated by the fact that I have to use the tube to evacuate. The pouch has to be semi full in order to get the tube into it, so if I don't have much to evacuate but it wants to get out, I end up in even more pain than the pain caused by the pouchitis. Today, I spoke to my GI and he was going to give me more Xifaxin, but I feel like I have gotten worse over the last two weeks rather than better, so I asked for Flagyl, which he prescribed with Entocort and I am still on FloraQ. I am hoping this combo will do the trick. I am also on percocet because the level of pain has increased even more. I know at this point it is a wait and see since I just started the new stuff, but I wanted to post to see if anyone has some ideas or tips for me. Thanks for taking the time to read and thank you in advance for your help!

Take care,
Shari : )

It sounds like there is more going on that is causing the pain than just pouchitis and a kink. Have you considered the permanent ostomy or a Kock pouch (if you are used to intubating)?

That has got to be better than being in constant pain. Then, there is always the chance they can salvage things once they get in and take a look around.

Just from experience, once they start talking about ostomy there at CC, it usually means the options are getting thin. They try every means possible to salvage pouches depending on the wishes of the patient too.

Narcotic pain meds can cause constipation which can add to the problem, so you might want to keep a steady stream of white grape juice going while you are on them.

I'm sorry I don't have any advice. Keep us updated with what you find out.

Take care...Lori

Hi Lori,

Thanks for your help. I don't think I am at the point of having to make a decision on a permanent ostomy (yet). The Clevland Clinic here in FL does not do the Kock pouch, so that even narrows my options. It was my GI and not my surgeon consults at the CC that recommended it anyhow. I have only had this pain on and off for two months now, so I am definitely not ready to contemplate surgery yet. I went for over a year after my take down with no complications like this. I still have quite a few more options to exhaust. I started the Flagyl and Entocort last night and I woke up this morning feeling a litle better, just REALLY sore in my lower abdomen. White grape juice, huh? I had been using decaf coffee, but white grape juice seems like a healthier option, so I will try that if I get in a "bind" again! I am also a bt nervous about the Flagyl since I read about a lot of negative side effects from other J-Pouchers and other sites online as well, so we'll have to play it by ear, as they say! I also realized as I was reading the boards last night that I had to separate taking the FloraQ from the anitbiotics. My Drs. never told me that and I was taking them all at once! How far should a wait inbetween anitbiotic & FloraQ?

Thanks!
Shari : )

Space them evenly if you can, but at least two hours from the antibiotic.

Jan

HI All,

Thanks for your response, Jan. I will space the anibiotics & FloraQ. In the mean time, here is an update that hopefully someone can help me with. After only 2 days on Flagyl I cannot take the nauseau. I am not eating very much at all despite my husband's good cooking that I usually can't get enough of. The bathroom trips have stopped almost completely, which alarms me. It does not feel like consipation, it just feels like I don't have to go at all, which is indeed a very strange feeling. I've only gone 3 times in the past two days and very little came out each time. The pouchitis pain has defintely lessened, but is still there occasionally despite the percocet. The main problem is a very different pain on the right side, exactly opposite of where my pouch is. It hurts really bad when I move at all and I am thinking that it might be a muscle pull or strain, but I did not know that could be as painful as this is. I have a CatScan scheduled for next Tues. so maybe that will explain some things. In the mean time, I am switching from FLagyl to Xifaxan and staying on the Entocort. Any ideas or pointers?

Thanks & take care,
Shari : )