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Hi All,

 

  I've been mostly a lurker here.  I posted shortly after my takedown back in 2009 after struggling heavily with my UC and the surgical procedure.  The ileostomy I had for 3 months was nearly unbearable due to issues with poor seals around my stoma and it was simply maddening.  I basically spent the summer of 2009 locked away depressed and alone.

  I've learned how to live with my J Pouch over the course of the last few eyars and was able to maintain a solid active lifestyle with relatively good health, save for a few Pouchitis flare ups that were quickly treated with Cipro.  In 2013 I had a blockage that required surgery and I have not regained my health since then.  I was running a 10K about 4 times a week, and in the best physical shape of my life prior to the blockage.  It was a major blow to my psyche and I have lasting "trust issues" with my body, particularly my abdominal region.  

  In the past few weeks I developed a case of pouchitis or maybe cuffitis.  No pain, just runny diarrhea and unexpected leakage.  It's different than anything I've had before.  I am wearing depends at night, had at least one daytime accident.  It's strange.  It doesn't feel like Pouchitis normally does, with that type of burning indigestion feeling.  This is more of my body just not knowing how to close up properly and leaking.  My general physician put me on Cipro.  Well, 3 days into it, my Achilles started aching on both heels.  I've never had issues with my achilles tendons.  Not only did this area ache but I started feeling weird pain in the fingers, toes and other joints such as knees.  I immediately stopped Cipro, 3 days into the cycle.  The doc flipped me to Ampicillan.  Been on that for 2 weeks and am not yet fully better.  Tomorrow I meet with my surgeon's office here in Portland to check things over and maybe he can recommend a medicine that can put an end to this that isn't Cipro.

  I'm full of questions right now.  My knees, hands and feet feel fine, but after two weeks my tendons still ache.  I can't run, can't walk very much or it starts hurting me as soon as I get off my feet.  Is there hope of this going away?  I've been trying epsom salt baths and magnesium cream and it seems to help a little but I'm scared this is permanent.  

  Do my symptoms sound more like Pouchitis or Cuffitis?  Are treatments typically the same?  Or since the cuff is lower would a suppository type treatment be more effective?  I was cleared as not having Chron's so I'm hoping it isn't that and I am fairly certain it is not.  

  Lastly, my abs feel really weak.  I am afraid to really use them.  I used to do a ton of ab work every day, prior to blockage and surgery.  Now, when I'm in the bath, my abs feel wrong, on one side under where the stoma used to be.  I'm not even sure how to explain it, but it feels different, kind of harder in that area and maybe I'm feeling scar tissue?  Also, in the bath, when I lay there and turn sideways, it is sore or uncomfortable feeling.  I even twisted sideways once to reach for something out of the bath, with my legs straight ahead, lying flat but rotating through the obliques... it felt like a quick sharp burning type pain right around the stoma location and heading into the belly button area.  Incisional hernia maybe?  how can they check for that?  Possible adhesions binding the small intestine to the back of the abdominal wall?  I'm just wanting to get in good shape again and need some self esteem work, honestly and this is really holding me back.  Anyone with some advice or just encouragement out there with nothing better to do today?

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I'd guess pouchitis rather than cuffitis. Ampicillin isn't commonly used for pouchitis - Flagyl or Xifaxan (rifaximin) would be more typical choices. If I weren't better after two weeks of ampicillin I'd be asking to try one of those. Xifaxan is very expensive, but would likely have the fewest side effects.

I'm glad you caught the Cipro-tendinitis quickly and stopped the medication promptly. I'd expect you to have a full recovery, though tendinitis can be slow and there's no guarantee. Good luck!

Scott F

I had tendonitis from cipro as a teenager. It took a few years of rest but it did completely go away. Mine was in my hips and I couldn't twist and lift things (like suitcases up stairs). It didn't improve until I was given a prescription for really potent anti-inflammatories (celebrex) for several weeks and then I avoided certain motions for a few years. I have also had adhesions and I can feel pulling when I twist in certain ways especially close to the ilestomy site. I had to have surgery to remove the worst ones about 4 years after my pouch was made but I had severe scarring from a ruptured colon. They don't do anything about them unless they become debilitating because there are a lot of risks with surgery and you are likely to just develop new adhesions every time they go in. I also had a small hernia at the ileostomy site that the surgeon repaired while he was there. I could feel the gap when I pushed on my abdomen. I have one other spot where I have a hernia that was made worse by pregnancy. I was told it would be invasive to repair and was too far from the c-section site to repair during that surgery. I don't notice it now that I don't have my insides pushed out by a baby. On the bright side, no more adhesion pain since everything got stretched out by the baby  

As far as your pouch is concerned, I've only used cipro for pouchitis (I've only had three cases in almost 20 years). It works so well for me that I was willing to take it even after having issues on it as a teenager. I was cleared for Crohns too but I ended up with a fistula and I sometimes have inflammation in the cuff region even though they did a musectomy when my pouch was made. It is definitely related to what I eat. Have you changed your diet at all? Things that destroy my pouch cuff include almonds (any amount) and foods that back me up like kale, frisee lettuce, large amounts of popcorn and nuts, apples, and too many peaches. I can eat all of these foods (except almonds) if my pouch is perfect in small amounts with other foods.

L

Thank you both for the advice and encouragement.  While my tendinitis is nagging, I certainly hope I won't have to stay off my feet for years to get it to subside.  I'm also worried about any type of NSAID or steroid to reduce the discomfort and swelling as I've heard stories of those getting Cortisone shots to relieve the tendon discomfort and then had their tendon rupture as Cipro has some strange relationship to anti-inflammatory drugs.  

I may try some compression type braces to wear around the house to reduce strain on those tendons.  

As for the weird prescription for Ampicillan, my surgeon (I went yesterday to meet with them) agreed it was not the right antibiotic.  He put me on flagyl for 10 days.  It doesn't make me feel very good but the side effects seem to be fairly mild and fully temporary, which is an advantage over Cipro.  I wish to avoid Cipro unless I get desperate.  I may try Xifaxin at some point if this Flagyl cycle doesn't work.

I have found foods that are difficult on me.  Potatoes are the devil.  I get such bad cramping and gas I can't eat fries, baked potatoes or potato chips.  Really, anything potato based.  I have to be careful with really rough, fibrous vegetables.  Snap peas are murder on me.  Small amounts of Brussels sprouts are okay but too many and I'm hating life.  I can't drink beer :-( really at all.  This is a somewhat recent development.  It causes such bad gas and bloating it just isn't worth it.  Some liquor seems to also exacerbate pouchitis, especially rum as it is super high in sugar content and during a flair up I avoid most sugar such as ice cream, chocolate.  I never drink sodas, again due to carbonation and gas and sugar.

The "hernia" I thought I have is probably just adhesions due to scar tissue.  I think the intestine is now bound to my abdominal wall.  I wonder if physical therapy or cupping could break that up and allow great range of motion there?  

N

I go in on Thursday for a pouch scoping.  Would this test for C Diff or is that a blood test?  

It feels like my tendons (achilles) are slowly feeling better.  I am wearing braces on my ankles when going barefoot or hanging around the house.  It isn't too bad with shoes on.  As for my digestive issues, they are still there, but improved.  Something still just doesn't quite seem "normal" based on how I've felt the past few years.  

As for feeling miserable with the urgency and everything, that seems to have vanished.  I was on vacation with my family, on a second round of Flagyl, when I came down with some sort of bad bug.  I had terrible diarrhea, cramping, nausea and shivering.  I thought C Diff and called the surgeons office.  They said to stop the Flagyl and take it really easy and see if it subsided.  I discontinued the Flagyl and slowly started feeling good again.  Within two days I felt really pretty good!  Now, I still have an unusual amount of gas after eating, even when avoiding the foods that tend to cause me problems (potatoes, brussels sprouts, pastas like ravioli and red sauce).  It just seems like everything is more sensitive right now.  But, I must say, I feel so much better than those nights wearing depends to bed and I'm only getting up once or twice per night and not 5 or 6 times so I'm much more well-rested.

 

N

Checking this FODMAP diet.  Never heard of it, but most of my issues seem to be related to food OR, some pouchitis flare ups seem to happen when my children get sick with a cold, and when I get it, it starts with just a sore throat and then, over several weeks I get pouchitis.  I don't know about taking Xifaxan for years.  That seems extreme to take antibiotics for years.  Isn't that bad for your overall immune system?  And won't the continuous use of antibiotics eventually lead to them being entirely ineffective?  

N

Xifaxan just gets absorbed in your gut. My pouch looks the best it ever has except for my abcesses off my anastomosis. I also rotate Cipro and flagyl for flare ups.

I took nothing for three years until it became more common for me to have them. I also have celiac disease and do a gluten free diet and avoid foods that don't break down. I also go to smoothies with protien powder when it acts up, or I use Greek yogurt with kale and other fruits I like. I baby my pouch when I have a flare. At one time I keep a food dairy to help find out what foods I didn't do good with, like milk in the last year so I drink almond milk or the other milks they make.

I am sorry but pouchittis isn't a easy thing to fix. Xifaxan also helps me have more formed poop until I have a flare. To me it's like bag or antibiotics. You can also take beano if you veggies or take a gas pill. 

I hope I haven't talked too much. Take care. Leila

LA

Thanks Leila and Scott.  This is helpful.  My surgeon did a scope last Thursday and today I got the results: Persistent Pouchitis, which was discovered after biopsy. Apparently the scope itself only showed mild inflammation.  I think I'll request Xifaxin this time around.  Flagyl just makes me feel nauseous and doesn't seem to eradicate the problem.  I think I will focus on food as the culprit and try to find a diet that works for me and some medication to clear me up.  I'm afraid to take Cipro as I'm still dealing with tendon soreness.  

N

I have a call in to them and they haven't ever prescribed it for this condition before.  Always Cipro or Flagyl.  Flagyl made me feel terrible but Cipro was scary this time around, after working fine for several years.  I hope they approve it.  I don't mind paying a little.  I'm probably 90% over the pouchitis but still not 100% and getting up once or twice each night to use the bathroom, lots of gas type discomfort regardless of what I eat or don't eat, it seems.  Of course we all want to feel 100% healthy. 

N

Pepto?  What does that do?  I thought taking Pepto was a bad idea as it trained your body to overproduce acid in the long term.  I'll have to check what dosage I'm on, but I'm taking 3 per day so probably a lower dose.  The clinic isn't familiar with Xifaxin as a treatment for pouchitis.  I'm the guinea pig here.  I wish there was a natural remedy.  I hate taking meds if I can avoid it.

 

N

I have also found that taking 2 tablespoons of Manuka Honey a day has been really helpful for me with pouchitis and cuffitis. Of course you need 15+ or higher on the UMF rating on the honey for it to have benefits. Manuka Honey has excellent medicinal properties, and is good for you at the same time. I am using Comvita 15+ UMF currently, and it is working well. I have been off antibiotics a while now, and was dependent on Cipro and Flagyl ever since my takedown. Hope this helps!

Diesel

D

To be honest I have not had serious problems over the last 8 yrs. since getting my pouch. When I have had issues I have used various remedies which have worked fortunately. The only advice I can offer you is that my experience with Imodium or Pepto was that for me "less was more". Although you can take the maximum daily dosage of 6 my experience was 2 worked better. (I do occasionally have some night leakage which I generally refer to as "wet farts". This is usually caused by eating fast or spicy food and wearing Depends for a few nights seems to address the problem adequately for me. Good luck in finding a solution for your issue.

Lew
Jan Dollar posted:

Correction, that's 550mg. It can be prescribed two or three times a day.

Pepto Bismol (bismuth subsalicylate) has antibacterial properties, and that is why it is useful for travelers diarrhea, besides calming the gut.

Jan

I am indeed prescribed 550MG 3 times daily.  So far, in two days, I've seen no change.  I am considering adding some Pepto.  Can you tell me how much you take?  

N
NuAnoos posted:

I go in on Thursday for a pouch scoping.  Would this test for C Diff or is that a blood test?  

It feels like my tendons (achilles) are slowly feeling better.  I am wearing braces on my ankles when going barefoot or hanging around the house.  It isn't too bad with shoes on.  As for my digestive issues, they are still there, but improved.  Something still just doesn't quite seem "normal" based on how I've felt the past few years.  

As for feeling miserable with the urgency and everything, that seems to have vanished.  I was on vacation with my family, on a second round of Flagyl, when I came down with some sort of bad bug.  I had terrible diarrhea, cramping, nausea and shivering.  I thought C Diff and called the surgeons office.  They said to stop the Flagyl and take it really easy and see if it subsided.  I discontinued the Flagyl and slowly started feeling good again.  Within two days I felt really pretty good!  Now, I still have an unusual amount of gas after eating, even when avoiding the foods that tend to cause me problems (potatoes, brussels sprouts, pastas like ravioli and red sauce).  It just seems like everything is more sensitive right now.  But, I must say, I feel so much better than those nights wearing depends to bed and I'm only getting up once or twice per night and not 5 or 6 times so I'm much more well-rested.

 

I am glad to hear you are feeling a little better. You have to be a strong person to be open about our issues we have and thank you for sharing. Most people have never heard of c diff. Anytime I have water bms that linger, I call the Dr and drop off a sample off at the lab at the hospital to see what's going on. I have chronic pouchittis and the Cipro and flagyl mess with the tendons in my hands hurt and if course a lot more side effects but they fix us. Stay strong!

 

LA

Finished a cycle of Xifaxin last night.  It gave me the worst gas probs but overall I think I feel better.  I'm avoiding all alcohol as it seems to trigger pouchitis.  Avoiding lactose.  Taking Manuka honey, not sure if it works but it tastes good!, and avoiding high sugar foods.  I tried FODMAP but no way I can do that.  I already am trying to cut out certain carbs but the FODMAP is about 10 times more extreme than I can hang with.  I hope things continue to stabilize or I'll do another round of Flagyl or Xifaxin.  

N

Well, Xifaxin and Flagyl only reduce my pouchitis but neither cure it.  It sits there, waiting for me to go off the Antibiotics and then boom, I get nailed again.  My achilles are still a mess from the dose of 3 days of cipro I took back in June.  I have pain, cannot run, do a lot of soaking in the bath in the evenings.  They are tender even sitting at my job if I don't wear my ankle supports.  I think maybe I've ruined them, but keep hope that they start feeling better and I could maybe exercise.

Not sure where to go from here.  Maybe another round of Xifaxin?  Not sure.  I don't want to do remicade or humira.  I had to give remicade a shot during my UC days and it was miserable.  I also hated the list of side effects, which seemed a real roll of the dice.  I had never heard of Pouchitis when I had my colon removed.

 

N

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