Feeling miserable

It would be surprising for something "in your head" to change the odor of your stool. A C. diff test seems wise to me.

I am so sorry Mema,

No idea for the rest but keep yourself hydrated and keep those salts up...if you are running constantly to the bathroom then you are losing a lot of fluids and salts...dehydration (along with everything else) is capable of making you miserable, crampy, headachy, tired...

Are you getting any exercise (I know that you don't feel comfortable leaving the house so maybe a walk is out of the quesiton but fresh air wouldn't hurt...just 10 minutes around the block...you are going to end up with back pain, hip pain and weak abs from not walking enough...it will help you with your pelvic floor too if you keep your tummy sucked in while you walk and tighten those neither-muscles)...yoga in front of the computer or tv with little or no equipment works too.

I can't help with whatever infection is brewing (you may be reacting to the cipro too) but I can metaphorically give you a push out that door...fear will make you a shut in (been there, done that) and make you even more miserable.

Hang in there, take naps and walk at least 10mins every 2hrs....and use heating pads.

Sharon

Sharon

Believe it or not, I am going to the gym and able to go out when I load myself up with lomotil. However, when I put something in my mouth, it's ready to escape before my last bite. This actually has been going on for some time, but I've been ignoring it. There are even some days that I feel fine but today was a day that that has been especially bad. I don't understand, if it is c.diff, why I would feel okay one day and not the next. My anus feels like there was a pole stuck up there (descriptive isn't it) but that's really the way it feels. I'm on more medication than I've ever been on in my life and feeling worse than I ever have. I just called the doctor, and am dreading what's in store for me.

The gym is great...Even if it is sporatic...

What are you eating? Could you have developped a food alergy? A sensitivity? Have you started taking any new meds? Supplements?

I am sure that it isn't that but you never know...

I never get heartburn and nausea but this summer I started getting violently ill every morning...heart burn to drill holes in my stomach...turns out that one of my supplements was doing it (zinc)...I can take all but that one no matter what I eat or what time of day...

If it isn't an every day thing then you could be right...it may just be something else.

Sharon

Thanks so much for caring....just spoke to my doctor and he's going to check me for c.diff tomorrow. Happy that I don't work in a lab....YUCK

Hi-

Just reading the symptoms of your stools-what about a stricture? About 5 years ago, I was having those exact same stools and was found to have a stricture at the inlet of my pouch. Not sure why a stricture would cause these symptoms, but your stool description sounded very familiar. I am no physician so I could be way wrong here...just thought I would give you my experience. I am so sorry the cipro and Remicade aren't helping-those are 2 of my favorite drugs!! May you find an answer soon!! Definitely think test for C diff is great idea since that is usually the 1st thing to rule out!!

I find it interesting that you are saying that maybe it's a stricture. My bottom is so sore and goes between burning and feeling like there's a pole stuck up there. No amount of creams seems to heal it and I am feeling so uncomfortable. Passing even liquid stools makes it feel sore. The doctor should be calling me today with the results of the culture since I sent it in yesterday. If it is negative I'll certainly ask him if that could be the problem and see what he suggests. Thanks so much!!

I hope things have improved.  I had c.diff with and without my colon.  It is difficult to tell when you already suffer with diarrhea. Also the testing is tricky when you are taking antibiotics. Back then the test could be wrong unless you were off antibiotics for 14 days. ( I was told that Cipro caused it the first time I had it with my colon.) 

 

Did your doctor ever tell you to use probiotics while on the antibiotics to prevent yeast infections?  You need to take them 3-4 hours on either side of the antibiotic you are taking.  I've used VSL#3DS for 4+ years and have no idea if it helped my j-pouch or not.  It did prevent the yeast infections I use to get when I had my colon and was taking antibiotics for a different health problem.

 

I hope you feel better. Gong to the Gym in the midst of all of this is remarkable.

Thanks TE Marie. As it turned out I didn't have c.diff must have had a bug of some kind although something is not right with me. I'm on more meds than ever before and feel worse. Every night I wake up at least 3 times with a mess in my pants and the gas is unbelievable. I have an ache in my rectum which seems to be relieved when I empty my pouch completely and some bleeding, don't know what that's all about.

 

I'm on a probiotic and have been for years. I believe I got the yeast infection because of the fact that I'm on remicade, but I don't know for sure. The only thing that I do know is that I'm very discouraged and forget what it's like to feel good. I'm tired of this fight, and ready to give up.

Mema, depending on what probiotic you're using, a stronger one might be worth a try. VSL #3 DS is the highest dose I think you can buy, and studies have shown that the dose matters.

Good suggestion Scott. The VSL#3DS requires a prescription but one could buy

The packets without  a script.  I wonder if part of your feeling so bad is a side effect from the remicade. I never tried it but know someone that gets sick  for a few days after taking infusion. The bleeding is always scary for me.  You would think I'did be used to it by now....I hope your doctor and you gets it all figured out.

My doctor did give me the VSL (samples) and it made no difference. As far as the remicade being a side effect, I believe it since I haven't really felt well since then, and besides feeling lousy, my hair has been falling out, and that doesn't really make me feel very happy.

 

I'm pretty sure that I have cuffitis, so have been using the suppositories very sparingly since I have medicare. It was $75 for a three month script and now it will cost me much, much more and I just can't afford it.

If the Canasa (mesalamine) suppositories are too expensive, the generic mesalamine enemas should be much cheaper. Same medicine...

I wasn't aware that they even had mesalamine enemas, Scott, thanks for the heads up. 

 

I'm going to PM you CE Marie, please let me know if you receive the message.

As far as the yeast infection, in the past I noticed I was more prone to get them when combining cipro with a immune suppressant drug (entocort). The cipro kills bacteria and the yeast occupy space formerly occupied by bacteria. Apart from lowering the dosage of cipro you can rotate onto xifaxin which is not systemically absorbed and allows bacteria outside of the gut to repopulate. It can be very difficult to shake a yeast infection when you are combining cipro with any immune system suppressant and not rotating antibiotics.

Regarding floating stool/foul odor these are symptoms of pouchitis and bacterial overgrowth and cipro and other antibiotics normally should be able to control them.

I am slated to start Remicade soon and my Doctor already told me we give it 3 months and if not results seen when he scopes me then on to Entyvio. Cimzia may be another treatment option as well for you.

I hope you do well on the remicade, I personally don't see much of a difference for myself. The doctor, however, has not mentioned any change. I really am not sure that he really knows what to do with me. I think I had more luck with my surgeon, but since I got the diagnosis of crohn's he is out of the picture for now anyway. 

 

As for the smelly, floating stool, I had some today, it's quite sickening and doesn't appear that the cipro is doing anything at all. 

 

I think that all the pains and gas and waking up many times at night is cuffitis because since I've been using the rowasa, I seem a bit better. I hate being on all of these meds, though.

 

Wishing you luck again with the remicade. I do hope it helps you.

Thanks- my Doc has a very distinct plan with the Remicade: 3 infusions at 0, 2 and 6 weeks; scope to measure progress at 12 weeks; if no progress, on to Entyvio. We are currently awaiting insurance approval on Remicade which I was told should come within a week, and then we will schedule the first infusion.

 

I seem to be controlling my symptoms better than you are with antibiotics, but I am not controlling the inflammation, and I am hoping the Remicade will dial it back.  If not we will just move on to the Entyvio.

Mema 1

I had a problem with Cipro when I  still had my colon. It caused a c.diff infection. I can't use it again. I wish it could have been taken i for my pouchitis but they said I couldn't use it. I had c.diff with my pouch that took  4 or so rounds of flagyl to get rid of. Have you been checked for c.diff? Any doctor can order the stool test to test for it. My PCP was the one  that caught it, before my j-pouch.  The symptoms include smelly diarrhea so you might want to get it checked out. It's difficult to tell when j-pouch diarrhea is occuring. I got my first cuffitis diagnosis along with a c.diff one. My GI took a stool sample duringredients the pouch scope. 

I was checked for c.diff and it was negative. I still have very smelly stool, but think it's the remicade. It's a very strange consistency at times and pretty nauseating but it proved to be negative. There was a big article about cipro just recently about how dangerous the drug was. It was on TV the other night as well. I swear, I don't think it's doing anything for me anyway.....I'm going to try to go off of it soon and just stick with the suppositories. My GI doc really doesn't know too much about pouches and said the cipro should help my cuffitis, yah, right!!