Skip to main content

42 replies

Back on Cipro + Flagyl

SpookySpookyMember
I ended up spending most of last night in the ER. As some of you know, I've had a couple of episodes of bleeding over the past 3-4 months, though it had completely settled down for the past 6 weeks. However yesterday, out of the blue, I had 5-6 bloody bms (they have since stopped today). This is NOT at all like what I was getting before. Previously, I had 4-5 instances of blood in the stool, but when I went again a few hours later, there was no blood. This time there was a lot, varying from red to dark red, mixed in with the stool. Of course, my GI is away until January 7, and in fact the entire department is there on an on-call basis only until January 3, so after calling around in vain, I finally decided to go to the ER. I am being tested for c.diff, but after the GI consult, they have decided in the meantime, to treat me for pouchitis. The thing is, I'm not convinced I have pouchitis. I've had it before and the symptoms were very different. I have no diarrhea, no urgency, no straining, no discomfort, nothing that would seem like pouchitis. I also had a scope in September which revealed no inflammation. So I'll do the course of antibiotics on the off-chance that there is something going on. And, if it does turn out to be c.diff, at least I'm on the flagyl.

Obviously I'm calling the GI clinic first thing on January 3, as I'm getting tired of this and need to get to the bottom of what is going on. Other than the bleeding, pouch function has been great. One question, though: could this be cuffitis? I've never had cuffitis as far as I know, but I have heard that bleeding with cuffitis can occasionally be quite profuse at times. I have had some soreness and burning passing stool, though the doc said yesterday there definitley wasn't a fissure. And I am aware there is always the possibility of CD, but I don't have any of the other typical symptoms of that either.

Thoughts?
Original Post

Replies sorted oldest to newest

J jeaneMember
Clicky,
I have been dealing with this going on a year. I may be ok for a bit but the bleeding always rears it's head. I have chronic cuffitis and constant burning and anal pain even on all types if meds such as antibiotics and rectal suppositories. I even bleed when on the suppositories.

I am starting to question whether I am dealing with perianal crohns as my pouch is fine too. It is the anal transition area that gives me all my problems and it is quite disabling.

After over a year of dealing with this I may need to bite the billet and have my pouch advanced. I know my ulcers are not going away as my cuff is always bumpy and the scar tissue is now creating stenosis. It has not been fun.

I agree that you need a follow up on this. Cuffitis can also be asymptomatic with no bleeding. The antibiotics do not seem to really help my cuffitis lately and the rectal meds are doing nothing. I am sure you can get yours under control with some rectal meds if cuffitis is what you are dealing with.
Jan DollarJan DollarModerator, RN, retired
If you had active cuffitis, any on-call GI in the ER could determine this with a simple digital rectal exam. The cuff would feel bumpy, just like with proctitis. Since it is bumpy all the time, you have chronic cuffitis. Antibiotics may help with the symptoms, but typically, the treatment s hydrocortisone or mesalamine suppositories. Do you have any on hand?

The fact you weren't having pouchitis symptoms would lead me to believe it isn't pouchitis. Some people can have pretty severe pouchitis with minimal symptoms, but it tends to be onsistent in he same person.

Jan Smiler
SpookySpookyMember
Unfortunately the GI was a phone consult only. I was examined by the on call ER physician, as there was no GI available last night (figures). She then phoned the GI and discussed my issues. So, since no GI examined me, cuffitis has not officially been ruled out. Either way, I need to sort out why this is happening. Things had settled down nicely for 6 weeks, which is why my GI had asked me to wait until after Christmas to follow up. That's why it was so puzzling to suddenly have significant bleeding almost out of the blue yesterday, and that continued almost all day. That was by far the worst I have experienced since having the pouch.

That being said, I have no suppositories but I do have OTC hyrdocortisone cream. In the meantime it couldn't hurt to use that, though I'm sure it won't be even remotely strong enough.

Thanks for the replies, everyone. I will keep you posted as I find anything out.
SpookySpookyMember
Thanks, Jan. Actually, it would make perfect sense based on my IBD history, since my initial colitis went from zero (i.e., no disease) to fulminate overnight. There is no reason to expect that a cuffitis flare would present any differently. To be honest, at this point I'd almost be relieved to find out this was cuffitis (though I know many people suffer greatly with it), rather than something higher up in the pouch or ileum that could be a more serious problem.
C chasingtime (Guest)
quote:
I'd almost be relieved to find out this was cuffitis (though I know many people suffer greatly with it)

see this is what gets me. when i said i fear cuffitis the replies on here were "stop worrying, its nothing to fear and very manageable". spooky, i hope what ever news you get is good. we all deserve a great 2013...
Jan DollarJan DollarModerator, RN, retired
Tom, I think the idea is that it can be a relief to know what it is and that it is confined to this little area, even if it can be miserable. When your mind is going to places like small bowel Crohn's, abscesses, fistulas, etc., knowing it is cuffitis and there are different medical management options to try, is a relief.

Sort of a "glass half full" notion...

Jan Smiler
SpookySpookyMember
Well I finally got a call back and of course I can't get in to see anyone at the GI clinic until the 22nd. But at least I have an appointment and I'm holding it. I assume the c.diff cultures were negative because I did not get a call back from the lab, so I guess we can rule that out. I am not bleeding atm. I've got 2 more days left on the cipro/flagyl. Also, I don't know if it's because I've also been battling a cold or because I'm taking the flagyl 3x/day this time instead of twice as I was the last time, but the flagyl has caused some nausea this time, and I've had the metallic taste which I don't recall having last time I was on it in 2009. Luckily it's better when I take it with food. Not sure how you long term antibiotic folks manage. I hate being on the stuff. Smiler
CTBarristerCTBarristerMember
Spooky,

I never have any side effects from cipro and flagyl. I noticed the metallic taste on the flagyl when I started taking it and never since. It does cause nausea in some users but I have never had that happen. I NEVER take it on an empty stomach or mix it with alcohol. If you take these antibiotics on an empty stomach you are asking for trouble.

Also, if you have taken a long cycle of cipro and flagyl beware of yeast infections. Being a man I am most vulnerable in the armpits and legpits. As a woman I am sure you know where your vulnerabilities are. In my case I copiously blow dry those areas after showering. I also use Zeabsorb AF and never had a repeat yeast infection since 2010. Fungi need moisture, dark and warmth to thrive. You can definitely control 2 of those 3 things.

Good luck with getting to the bottom of it.
SpookySpookyMember
Like I said, the last time I was taking cipro/flagyl was almost 4 years ago, when I had confirmed pouchitis in 2009. I don't recall any negative side effects then, but I also wasn't taking flagyl 3x/day as I am now. I was kind of surprised at the dosage, actually. Anyway, I have been trying to time my antibiotics with meals and I have been avoiding alcohol like the plague. Just wasting my time in the waiting line now (actually, that's a line from a song I quite like...)
SpookySpookyMember
So I'm getting another pouchoscopy/ileoscope next week, my second pouchoscopy in just under 5 months, though the first one was "perfect." The only other thing is that my potassium is slightly below normal again, but I've had problems with low potassium before so it's hard to say if that is related to everything else that has been going on.

Other that that, nothing new to report.
SpookySpookyMember
I was prescribed them because when I went to the ER with bleeding over the Christmas holidays, they suspected pouchitis. However, the meds also really upset my stomach this time, and unless I have confirmed pouchitis in the future I think I'm going to avoid antibiotics at all costs. I haven't had a good experience the last few times I've been on them. Anyway, I'm going for a scope tomorrow which will hopefully give a little more insight into what is going on.
R RLCMember
I have been having the same trouble all along and have the dx of proctitis with this j pouch. My GI and surgeon keep talking about lowering the pouch and getting rid of what is still diseased. I have all your symptoms they (GI and surgeon) have never prescribe antibiotics for this. I have suppositories (Canasa and HC) and they don't seem to help. I am anemic and my aXX is always on FIRE! Can't we all just get a break from this!

Roberta
J jeaneMember
Roberta,

Who is your surgeon? I am wondering as I had a consult with Dr. Becker in Mass.

I can tell you this.. unless I am also on antibiotics, my back end is on fire constantly. Somehow, the antibiotics help with the rectal discomfrot and also because the slow down my output and thicken the stool (less anal irritation). I probably could manage on the antibiotics, but because they thicken the stool, they create an issue with my sticture at my anastomosis and result in straining and discomfort when emptying my pouch. I am fighting the pouch advancement surgery also at the moment--petrified of it, as well as more surgery. I also have some cuffitis and bleeding that occurs that I am trying to control with the suppositories..this whole thing is no fun.
Are you going to opt for surgey?
J jeaneMember
No one has suggested it to me at this time CTBarrister. Also, with my stricture, I think the medical options are only delaying my need for either strictureplasty or pouch advancement.

My pouch outlet anastomosis is so tight that I really need surgical treatment as I have had several dilations under anesthesia and when Dr. Remzi last scoped me in October he said it would only be a matter of time before I would need surgery. This issue in itself is contributing to the chronic pouchitis in my distal pouch and I am not sure if the cuffitis/inflammation is adding to the stricture woes or the stricture itslef and lack of blood flow in that area is making it impossible to heal the cuff and the ulcers below it.

I have just been trying to delay what is most likely the inevitable..more surgery.


Finally, I am not sure if anyone can relate to this, but my anastomosis seems like it is definitely on a tilt and I am not sure if that is because I have such a narrow pelvis or not. I know when I try to insert suppositories it seems as though I struggle to locate the connection as fibrious tissue is most likely blocking it and it seems very deep in the back of my pelvic area (close to my far back) and on a severe angle (possibly another potential issue for me).
SpookySpookyMember
Hi jeane (and everyone still following this thread)

I had my pouchoscopy this morning. The pouch actually looked "very good" with no signs of inflammation (biopsies were taken) and there was no significant inflammation on the cuff. I bled a bit from the biopsy but my GI wasn't concerned. Basically (as I half suspected) the pouch looks very good and it is obviously not the problem. My GI tried to go as high up with the scope as he could, but he suspects the problem is higher up, probably where I'm having the gurgling is in the area of the stoma site. Anyway, it's not in an area that he can view with the scope, so the next step is an MRI. They have faxed the referral and I'm now waiting for them to call me back with an appointment. Obviously, they are now looking for a possible strictured area, a lesion or ulcer, or (and I hope not) perhaps CD somewhere higher up. I am still having no pain and the bleeding once again has settled down. I'm done with the cipro and flagyl, thank goodness, because I didn't tolerate them well this time around. So we are back in the "wait and see" mode. Sorry I don't have anything more informative to report back with. I'm getting tired of this too. It's already been dragging on for several months and I just want to get to the bottom of it.
CTBarristerCTBarristerMember
They are going to do an MRI Enterography on you to see if there is thickening of the bowel in the ileum which would signify inflammation. You will need to drink volumin for that test at timed intervals. When they did my MRI Enterography (discussed in extreme detail in the thread below) they found my bowel to be thickened at the pouch inlet. If your problem is being caused higher up they will find it.

http://j-pouch.org/eve/forums/...921/m/3817024226/p/1
CTBarristerCTBarristerMember
I believe the entire ileum is seen, at a minimum, but not sure what else they can see. You drink the volumen at precise timed intervals so that they can see all that they need to see in your digestive tract. When they give you the bottles of volumen, there should be 3 bottles, each labelled with a time to drink it, in successive 20 minute intervals. So the volumen drinking process itself takes an hour.
J jeaneMember
Spooky ..is your blood visible, dark maroon streaked or is the stool just very dark? If so, this may indicate bleeding higher up. I have the same gurgling you refer to and also some upper left discomfort I complained about with my GI last time I was there. I am truly wondering the same thing you are regarding inflammation higher above the pouch in addition to the other issues I am contending with. Every time I go off cipro, the gurgling begins again, but I am at least able to empty my pouch easier off the antibiotics than on them.

Good luck with the test. Hopefully your bleeding will subside and they will find no other active inflammation above the pouch. That would be the best scenario. For those of us on multiple rounds of antibiotics, I think this article may offer insight as to why others may be getting diagnosed with Crohn's after an inital UC diagnosis and jpouch surgery, especially if they have repeat bouts of pouchitis where antibiotics are used to clear the infection.


http://www.foxnews.com/health/...-ulcerative-colitis/
SpookySpookyMember
jeane,

The blood varies--it is dark red to maroon and is completely mixed in with the stool. It's not streaked. The best way I can describe it, is that it looks like the type of bms I was getting when I had UC. That is why I feel it might be coming from above the pouch. The strange thing is, I have no other symptoms beyond the gurgling--no pain, no diarrhea or urgency. It's very strange.

Other than one isolated bought a year after takedown, pouchitis hasn't really been a problem for me. I've only been on 2 courses of antibiotics since having the pouch.

CTBarrister, thanks. This procedure is a bit more involved than I would have thought. I've had CTs before where I had to drink the barium. I barely got it down so I hope I can manage this time.
J jeaneMember
Spooky,

You situation is very similar to what I am recently dealing with. My cuff has appeared to heal(no more anal burning/irritation,*****ers up the back end feeling)and now the bleeding is exactly like you describe with the gurgling and some upper left pain. I am supposed to have a pouchoscopy on Friday, but my initial surgeon does not feel I need another one. He wants me to move to the surgery and I am worried as to whether I should go with him or bring my sorry ass down to Cleveland as my GI is recommending I do.
CTBarristerCTBarristerMember
Spooky,

Not sure what you drank but in the past I had the real chalky tasting barium and the volumen is not as bad. It's kind of barely tolerable if you drink it fast. As a kid back in the 1970s I would be nauseated drinking the really chalky barium but if they have you drink volumen it is not that bad.

The only part of the entire procedure that was bothersome for me was when the contrast was injected. It felt like acid was being pumped into my veins and for a second my palm felt like it had touched a hot stove and I made them stop. But it was very brief.

Also, as I mentioned in the other thread, the MRI procedure is very noisy and they give you ear plugs before sticking you in there. The whole time I thought I was in a spaceship with all those funny noises. They are not that loud or shrill, just really kind of weird and slightly startling.
SpookySpookyMember
CTBarrister,

I don't remember the barium being chalky. It was clear, but had a really awful taste, not to mention I had to drink what seemed like a copious amount (like a large sized movie softdrink volume, in a short period of time).

Funny you should mention it, but I had the same issue with the contrast dye the first time I had a CT scan. It burned so much going in, and the sensation came on so suddenly, that I actually screamed. I have since had other CTs and the sensation wasn't as bad, but I always make sure to mention my reaction every time I go.

I will definitely bring earplugs. My friend went for a shoulder MRI recently and also complained about the noise.
SpookySpookyMember
jeane,

It's interesting that your symptoms sound similar to mine. It seems in both of our cases the pouch has been ruled out as a cause. If you find out anything, be sure to report back here and I will do the same. Like I said, I'd really like to get this sorted out. I'm really starting to worry that there is something a little more serious going on than we initially thought.
J jeaneMember
Spooky. Post back your results. I'm interested to see how you make out.
I thought bleeding could easily occur with pouchitis especially if you have ulcers in your pouch. I was having a hard time seeing blood mixed in and combined with a much darker stool being caused strictly by cuffitis but all of my scopes to date never showed anything other than mild inflammation in my distal pouch. I was not bleeding though when I has my last scope in November. For me, since the anal pain and irritation subsided, the bleeding started. I don't know if it is coming from the cuff as I only bleed after i have had several movements.
R RLCMember
jeane -
My surgeon and all my surgeries have been done in Rhode Island. I live right at the line of Mass/Rhode Island. Dr. Vrees of RI Colorectal was my surgeon. He trained at the Cleveland Clinic.

I am with you as far as the surgery goes. Certainly not ready for it. Don't think I will make it out alive. Still too weak and thin! I keep loosing weight again. So, I go back to GI in a month, now.

Spooky and Jeane you seem to have the same symptoms as myself. I did have a scope and received pictures. I saw that I still was diseased in the area, mild inflammation in the pouch and ileitis.

I do have a bidet which works well with burning. I started to see acupuncturist/nutritionist she is also a doctor. She has told me a few things naturally to try. Lily of the Desert "Aloe Vera Gel" it is refrigerated you apply it with a cotton ball or cloth and that helps with butt burn. It has been amazing for me. I have tried everything from calmoseptine to butt paste, etc. They didn't seem to keep it away. Also, probiotics in liquid form...I was using the chewables as well. I seem to digest the liquid formula better.

Not sure if this is going to help me out but as you all know desperate times call for desperate measures! LOL I am hoping for the best for all of us!

Roberta
J jeaneMember
Roberta. Where can you get the aloe Vera? I also have some products I'll share with you when I get them later. One is vitamin e mixed with wheat germ and aloe Vera also. It is helpful.

If your not on suppositories for the cuffitis you should be. They can take forever to work and will never completely get rid of the cuffitis, but they can help the constant irritation, pain and burn and slow down the occurrences of bleeding if you are experiencing that. Everyone on the thread should keep each other posted of progress and next steps. This is a trying ordeal for those in our shoes.


Ps. I have started taking align twice a day, in addition to my vsl3 ds. I'm trying to load my gut with as much beneficial bacteria as possible when taking antibiotics which kill off everything.
R RLCMember
I got it at the VitaminShoppe here in MA. I saw it in Whole Foods as well. I do have the suppositories that I use on and off. I find when I use them my bones hurt so much (side effect). GI and surgeon can't believe that is the reaction I get. I keep playing with them. When it gets really bad I use them for a couple of days and certainly helps. I just can't stay on them all the time hate how I feel. Bleeding for me has subsided for now.
Right now, the acupuncture seems to be helping as well. Certainly, nothing is a quick fix for us so patience, patience, patience which isn't my strong side.

Roberta
Next

Add Reply

Views: 592
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×