Hey Roberta:
Sorry to hear you are still having problems. I wouldn't want any surgery anytime soon either. I am still feeling good, had last cipro yesterday morning. Kind of waiting for the other shoe to drop but hoping it won't! Taking one packet of vsl#3 DS a day. Hoping that helps also. Let's all stay in touch.

good ! Hopefully will stay this way.

Holly and Jean -
How are you both doing? I am taking a antispasmodic drug and steroidal suppository. Hoping that this works for me!

Roberta

Still struggling here. Waiting for GI to call this morn and will report back. Will probably be going back on cipro as it seems to be the only thing that calms my cuff enough do I can function. canasa and hydrocortisine suppositories barely do anything. Today I am starting fibercon with lots of water also. I am most certain my stricture is a large part of my issues.

Isn't this getting very frustrating! I said to my husband I don't know how much longer I can go with this new life! This is getting old real fast! Still trying to stay positive! I hope you do the same!

Roberta

I am starting to feel like I did before this last round of cipro. Increased bm's, boo!! How often can you go on cipro?

Had a really bad weekend, call doc today he is going to put me on a 30 day round of cipro this time and do a scope in about two weeks.

quote:

How often can you go on cipro?

For 17 years continuously and counting, including both cipro and other antibiotics. It is starting to sound to me like you may have antibiotic-dependent pouchitis. You may want to discuss the concept of rotating antibiotics with your Doc as you cannot stay on cipro forever although you can stay on rotating antibiotics for 17 years - something I have proven.

I am def. going to discuss that with him. How do you feel inbetween rounds. Or do you just go from one to the other. It is def. aggravating to feel so good then when off of it I can just feel the pouchitis effects starting. I have a good doc and he will get to "bottom" of this , yes pun intended, thanks!

quote:

How do you feel inbetween rounds. Or do you just go from one to the other.

I pretty much go from one round to another. Numerous attempts have been made to go "cold turkey" which usually failed within a week. When I went on Entocort earlier this year we tried one week on antibiotics, one week off with probiotics, and that did not work either. My established pattern is that I deteriorate quickly within a week without antibiotics. I have been dependent on them for 17 years.

i have a question. with all the medications you need to be on for pouchitis would it have made more sense to just have kept your colon and medicated? im so confused why we all agreed to losing the colon. is it easier to treat a pouch than a colon?

quote:

would it have made more sense to just have kept your colon and medicated?

The answer is no. I had dysplasia in my colon, I was in extreme pain, I was losing a lot of blood, and I had absolutely no control over my bowels (crapping in my pants all the time). When removed my colon was dissolving in my surgeon's hands. This despite being on 60 mg of Prednisone which caused me to have osteopenia. The surgery was worth it also to get me off Prednisone which is worse than any meds I am on now.

There is absolutely no comparison between my life with UC and my life with manageable pouchitis. In retrospect I had no choice but to have the surgery, but even if I had a choice, I would do it again in a heartbeat.

Back in those days they did not have Remicade on the market. The only biologic that was around was Imuran. I was tried on it and my liver chemistries went haywire. I think my colon was in too bad a shape to have been saved by any meds when I finally had surgery in 1992 after 20 years of UC.

I am now on Cipro and Xifaxin. I do not want to jinx things but today I am starting to feel normal for the first time in about a month! I tried two rounds of Cipro and Flagyl and then one course of just Cipro. Nothing seemed to help.

I was in bed last week with very painful abdominal cramping as well as the pouchitis symptoms. I think completing the half-marathon in Las Vegas was too much for my immune system. The pouchitis became dramatically worse the next morning.

Holly and Jeanne, I hope you feel better soon. I am told the scope can help determine whether we really have pouchitis or bacterial overgrowth in the j-pouch. I am having mine on the 21st. I wish it was this week.

Chasing time, I think I would have lost my colon no matter what. It was so diseased that pieces were coming out of me. After surgery, the colorectal surgeon said it was the "worst medical disaster he had ever seen." I am very, very lucky that he could save me. I should have had it removed 2 years ago but I was stubborn and wanted to try every medication available.

A J-pouch is not a panacea. We will experience many ups and downs with this just as we might with a "normal" body. It is important for me to keep experimenting until I reach the best quality of life I can attain.

Have you thought about working with a food allergist and/or a nutritionist? I kept a food journal and did an elimination diet. It helped me figure out the quantity and combinations of food that work for me. The allergy test results were surprising but very useful. The nutritionist pushed me to include foods I would not normally try but now enjoy.

I am sorry you are feeling miserable. I hope you will keep trying new things until you find what works.

CT I often think that I was in less pain with UC and I could at least work and function. Now, still struggling with j pouch. When I go I feel like I am having contractions/spasms and pain all the time. Body always aches in some area (not sure why). After the holidays I am looking for a nutritionist and into acupuncture hoping that this may alleviate some of my symptoms. Cuffitis on steroidal suppositories and an antispasmodic drug. I do have a little pouchitis but they have not giving me any antibiotics as of yet.

Roberta

I only have a few days left on my 30 day round of cipro. It has allowed me to feel "normal". I do have my pouch scope scheduled for Jan. 15th, so maybe that will tell what is actually going on with me.

Good luck,Holly. We seem to be following much the same trajectory. I have been off cipro for a couple of weeks now and am doing fine - no pouchitis symptoms have re-surfaced. Hopefully...

I'm rooting for you to maintain "normal". There is nothing like feeling good after feeling bad for so long.

Thanks TinCan. Have you had a pouch scope yet? I am a little nervous about it but have heard from a few people that it is not that bad.

Yes, to determine that I indeed did have pouchitis. It was not a big deal. Just the general discomfort of bending over a table and having someone poking around down there. Reminded me of a flex sig. I think it took me longer to get into position than the duration of the actual procedure.

I've had 3 pouchoscopies without sedation and all were fine. You do feel some pressure from the air being pumped inside, it's a curious sensation but there was no pain. Honestly, trying to expel the excess gas afterwards was more annoying than the procedure itself. And as an added bonus, you get to see your pouch on TV (my GI actually turned the screen so I could look). And you can drive yourself home afterwards and you don't have to stay the extra hour or so in the recovery room.

That being said, if you do have painful active pouchitis, cuffitis, are generally squeamish, or else are very anxious about the scope, then it wouldn't hurt to request sedation.

Best of luck!

I have always opted for sedation during my pouchoscopies. So I don't know how bad they are. Unlike you guys I am a veteran of the colonoscopies of the 1970s during which sedation was not an option. They were horrible. I think Jan Dollar is the one other poster who can remember the unsedated colonoscopies of the 1970s. Due to the trauma I have from those procedures I always get sedation. I am told the pouchoscopy is nowhere near as invasive or painful as the colonscopies done without sedation in the 1970s. Back in those days Doctors did not believe in sedation, they believed you just had to to suck it up and take it so I was forced to do that. The younger generation of UC patients is significantly more spoiled than we were back in the 1970s. Basically all there was to treat UC was prednisone and azulfidine and that was it. Cortisone enemas came in the late 1970s I think. No sedation until the 1980s. You guys do not know what it was like and if you had to go through it, you would be scared to have an unsedated pouchoscopy. Although there is something to be said for watching your pouch on live TV, I settle for the color photos afterwards and I have posted the pics of my recent study in June on this board for all to see.

I have woken up during colonoscopies and felt the discomfort but to not have sedation at all I feel for you ! I am a big wimp , the doc said we do the scope without sedation but if it gets to unbearable we will stop and reschedule! Yikes should that be a hint I should have the sedation from the get go ???? I didn't know about the gas after, yuck!!

quote:

I am a big wimp

So why do you need to be a hero? Chances are you will tolerate the procedure, but why roll the dice and even risk a possible wimp-out situation? What do you need to prove? And to whom?

In the past I read some of the posts by people who do not get sedation, and I do not understand why anyone would subject themselves to a pain experience that does not need to be submitted to. Most of the posts I read, frankly, do not withstand any logical scrutiny.

But that being said, I suspect the discomfort is minimal as described by Spooky. The question is whether it needs to be tolerated or not, and in my mind, there is no need to tolerate it.

CT, I have had a couple of people say the same thing "why be a hero". I just may call the doc's office back on Monday, I feel we have all been through enough why suffer more? Thanks for writing what I was feeling.

The point is, you have a choice regarding whether or not to have sedation. I didn't mention in my other post, but it was my choice not to have sedation, with the encouragement of my GI, though if I had asked for it he would have given it to me. It has nothing to do with the fact that you're "braver" than somebody else. Only you can know what you can or cannot tolerate. In my case, I was happy to forego sedation and to be able to get on with my day afterwards.

That being said, most of us have had our fair share of procedures already, and you might just be at the point where you don't want to feel anything anymore. In that case, get the sedation. But there's no one way that's "better," just what is right for you, and you shouldn't feel bad for asking for something to avoid pain. Not to mention, if you're just going to worry yourself sick about it between now and the procedure, then just get sedation.

It also doesn't hurt to ask exactly what the procedure will involve i.e. is it just the pouch being scoped, or is the surgeon going to go higher up into the ileum? For me, if I knew that the scope was going to go higher up into the ileum, then I'd probably ask to be sedated.

and also the stress it causes worrying the whole time leading up to it. not good. would a sedated sphincter and pouch behave better for the scoper? no flinching clenching squirming even if its involuntary...

quote:

For me, if I knew that the scope was going to go higher up into the ileum, then I'd probably ask to be sedated.

Spooky, I am glad you brought up this point. In my case it is essential that they go higher up in the ileum since I have inflammation in my ileum 30 cm above the pouch. Another reason why I choose sedation. The thing is that if Holly M has a good GI, he/she will take a "peek" above the pouch at the neoterminal ileum to see if anything is cooking up there, and if it is, there will then be a deeper penetration further up the neoterminal ileum. No way to know whether this will be happening in advance, it depends on what they see. I have never been fully conscious to be able to tell you about it precisely, but I very much doubt that this deeper thrust up the ileum is a pleasurable sensation for the unsedated patient.

I definitely agree with CT and Spooky regarding your desire/right to have sedation. It was not difficult in my case, but I wasn't exactly looking forward to it given the number of times I had been poked and prodded. I think we all reach a point where we just can't take it anymore, even if the pain is relatively minor. If you are at that point, then sedation is a reasonable option.

By the way CT, I actually opted to have my last colonoscopy without sedation. One reason was simply for the experience and to be able to watch (and remember!) the procedure in action. Quite enlightening although not something I would recommend people putting on their bucket list. Having the option is a much better state of affairs.

Hi. I have had several pouchoscopies without sedation/anesthesia, and they are not bad at all. Nothing compared to a colonoscopy...there must not be as many nerve endings in your small intestine. You just feel a little bloated when they add some air to increase visualization.
With that being said, I have had them with anesthesia as well, and the only time I didn't was when it was more of an emergency/on the spot necessity.