FYI - IPS vs Poucitis

I may or may not have IPS, but should find out soon, or not - are there any truly definitive diagnoses in pouch land?

As it happens, I just had an endoscopy of my pouch this past friday. I have been presenting symptoms of what I took to be pouchitis for a good two weeks prior and refrained from taking cipro in order to obtain a clear diagnosis (my initial diagnosis was made by symptoms only). The endoscopy was ambiguous and my surgeon took some biopsies. In the meantime I was given a prescription for levsin to see if that helps. Clearly he thinks IPS may be involved.

In any event, I had never paid any attention to IPS until this weekend. So you raise an interesting question. I would be very interested to hear how you treat your IPS and when/why you need antibiotics. I know that cipro gives me pretty quick relief, but perhaps I do not need to take it quite so much?

I thought I had Pouchitis at first too but after biopsies and visual inspection of my pouch during pouch scopes, it was determined I didn't have pouchitis. Antibiotics can help sometimes but not like they do for pouchitis as there's not an infection.

Search for Irritable Pouch Syndrome and papers by Dr. Bo Shen from Cleveland Clinic and Dr. Edward Loftus, Jr. from Mayo Clinic, he is my GI. I have one of Dr. Shen's paper's linked above. Dr. Loftus has me using Loperamide 2MG, which is prescription Imodium and better as it is in capsule form and it gets into my system faster. This way I don't end up taking too many.

Dr. Loftus didn't prescribe or discuss an antidepressant or anxiety medication for me but I already take these medications. I've read in some of the IPS treatment article sections that they may be prescribed for IPS.

I have chronic cuffitis have had c.diff infections and IPS since getting my j-pouch. They along with pouchitis have similar symptoms and sometimes you can have several of them going on at the same time! I had cuffitis and c.diff at the same time - I might even have had IPS too, who knows?

I have abdominal pain that is not j-pouch pain. I take Norco daily for abdominal pain, adhesions and everything else that is going on in there, and it slows the system down. When things get too painful I take an antispasmodic Dicyclomine 20 MG. Plus I have to watch my diet as around my stoma and incision area I have adhesions which are painful with heavy foods, like steak, or too much food at once, no matter how much I chew. I also can't eat raw vegetables yet, unless they are mixed up in my protein smoothies. I've had my j-pouch almost 3 years.

I hope you are feeling better soon

Thanks for the info TE Marie. You have a much more challenging condition than I. Hopefully things are moving in the right direction for you.

I am going to try oxy/levsin/loperamide for a while and see what happens. One thing I have noticed is that levsin really knocks me out so I will need to use that one strategically.

I didn't even discuss the fact I do take antibiotics in my prior post for IPS! When the Loperamide and canassa suppositories, for chronic cuffitis, are not enough and my frequency and pain becomes too much. I take Norco daily and the pain becomes worse when I need to start antibiotics.

Dr. Loftus prescribed 8 months of Augmentin at my last annual appointment and I take it as needed which is around two weeks on it and four weeks off. I take Augmentin 250MG twice daily as I can't take Cipro, because of the c.diff potential for me, and I don't do too well on Flagyl.

Sorry, I thought I'd included that in my first post. I don't take probiotics when I'm taking Augmentin.

Well te Marie I think you may have solved my ongoing problem have been treated for pouchitus over a period of time, but have found that my symptoms are a little differant with pouchitus my stool is watery gushing out where as lately I have pressure to go now with only moderate amount coming out with a lot of gas a lot os spasaming pain affecting my back I think that is from constantly going I take lommital daily and about 30 mg of bus open for spasms this gives some help until I read this post did not know about ips so should I have this confirmed by test or what ? Also I saw in another of your post you said that you have neuropathy my sister has a lot of trouble and cannot get any answers from the doctors on what she could do for relief what do you do any thing special she is seeing a naturopath at the moment and he has her on vitamin b6 to early to tell if it will help.
So thank you for alerting us on other aspects to look into sue

Gushing, gas and pain sounds familiar It's hard for me to say where my pain is coming from as I'm in pain everyday. I guess from adhesions, but it gets worse and I use my heating pad on my back too. My Mayo GI diagnosed the IPS this way. For my first appointment he examined me and my abdomen, by pressing and such, plus he asked me many questions. For example he asked me questions that you would think only a fellow j-poucher would know to ask about things like did I feel like I completely emptied my pouch every time I had a BM etc. I then had blood and stool testing plus a pouch scope. I was brave, for me, and had no medication for the scope. The nurses told me the doctor doing the procedure was brilliant so I went for it and I'm glad I did. He explained the inside of my pouch to me and even went up 2 feet inside my small intestine. So I also saw that my pouch was not inflamed until he got down to my cuff and where I had cuffitis. It was red and ugly. He took biopsies throughout and said I had a great looking pouch, except for the cuff, and it was well built. It was like he was looking at a house or a car, lol. That has given me relief, I know my pouch is well constructed. My GI specialist told me the IPS and cuffitis diagnoses the day after the pouch scope and the results were in from the biopsies and the blood and stool testing. He also explained that my thyroid tested very low and that negatively affects pouch function as well.

At that time my cuffitis was the big problem and I was there to get it under control. About 8 months or so after getting it under control I was still having problems that I thought was pouchitis. My local Internist gave me several prescriptions for Flagyl for it before I contacted my GI. Mayo is 4 hours away is why I contacted her first. Since it looked like it wasn't going to be a one time event I contacted my j-pouch doctor. That's when he took over treatment. After my annual pouch scope I also had a balloon test this year. I can't remember what it's called, sorry. The test was easy and there was no prep. So he's added the Loperamide into the treatment and the dosage for the antibiotic is not as high as it was for pouchitis treatment. Plus when you read the studies and papers about treatment they discuss antidepressants and/or anxiety medication as treatment too. I do take antidepressants and anxiety medications already so he's never said anything to me about them or their use for IPS.

Advice for your sister
I have fibromyalgia as well and for years I thought my foot pain was caused by it. 2 foot doctors, a rheumatologist, a GP, an internist and finally a Neurologist before I received the correct diagnosis and treatment. The damage done is permanent and I'm hoping he figures out what caused it in the first place. I can still walk but not too far and some day's I need a cane.

I hope you and your sister are feeling better soon

I was just getting ready to post something fairly similar in regards to this topic. A little bit of history- I've had my jpouch for 2 years. I did really well during the first year, but had a lot of pressure and pain with sitting. I had a partial blockage at the end of February and then was hospitilaized for severe pouchitis and at that time they were thinking it was most likely Crohns. I had an appt with Dr. lashner at CC. Dr. Shen did a scope at that time. My jpouch had a few lesions but had mostly cleared up.
Can I just say how much I hate when drs give you a diagnosis when you're coming out of anesthesia! I was a little foggy, but both dr lashner and Shen recommended I stop taking NSAIDs - which I don't take.
I ended up being hospitalized again in July with dehydration and low iron. My pouch looked clear for the most part, but I did have a small fistula forming. The drs. I saw in the hospital at CC were positive that it was most likely Crohns. I saw Dr. lashner a couple of weeks later. The biopsies they had taken determined it was not crohns but Irritable Pouch Syndrome.
He started me on probiotics, Elavil, fiber supplements. I am continuing to take vitamin d, and iron.
I'm still going to the bathroom upwards of 20 times a day. I can't sleep for longer than two hours at a time. And just this week, I started having leakage and an occasional accident.
I'm seeing my GI next Tuesday, but do you have any suggestions on what to do in the meantime?
If they can't get me to where I was a year ago, I'm strongly considering going back to the end ileo.
Sorry for the novel, but I could use some advice if anyone has any.

quote:

Elavil

Just curious if the Elavil does anything for you? I was on it 2.5 years ago for IC but it made me retain all day and piss all night so I got off of it. I thought about trying it for pouch pain and again, IC/Bladder issues. Thoughts on it?

Oh and I have a good friend that lives in Zanesville

Gosh . . . I am not the only one! I was beginning to feel like I have been under a cloud now for a long time: gas, which punches its way into my pouch, causing leaks, broken sleep with leaks, and lately, leaking when I am out and about. (I wear pads, but the leakage burns so bad, as I also have anal fissures.) I call it grouchy-pouch, but it never completely goes away.

No way to live, I tell ya . . . .

res
I'm can take up to 8 Loperamide daily(prescription Imodium daily not fiber) but only take a few a day and at bedtime is important to prevent accidents. I had a bad accident the other night I'm up at least few times a night too. I can count on one hand the number of nights I've slept 7 hours straight since my take down almost 3 years ago. Usually the pain, gas and need to go wakes me up. I have partial blockages every now and then so take the minimum Loperamide.

Maybe you need to take a different kind of antidepressant that is in the SSRI family verses the Elavil you are taking. There are studies and books that discuss how the colon helps make serotonin. It is a chemical we need in our brain that affects depression. I've had to change the one I take several times over the years. I was on an antidepressant for years, before the surgeries, for my fibromyalgia. A second one, that was an SSRI, was added after I became deeply depressed after the surgeries. That one had to be changed after a few years and the one I'm on now is much better. There are many people on here and I don't see that there are that many that take antidepressants. Some of us really do need them. I take Viibryd, Wellbrutrin and take xanex as needed. I also take Norco for pain. Have you discussed the antidepressant you are taking with your GP?

In a paper that Dr. Shen wrote he discusses using antibiotics for IPS as well. It is not known why but they do help. For some reason they get the stool frequency to decrease. Then I use VSL#3DS probiotics and loperamide until the frequency gradually increases and I need to take Augmentin again. The time in-between when I need to take the antibiotics and not varies and I'm hoping eventually not to have to take them.

Have they checked your thyroid? Mine has been giving me all kinds of grief since the surgeries. I've had an underactive one for 20 years but the last 3, since the operations, we've had a hard time keeping my dosage at the correct amount. It changes all the time. Dr. Loftus, my Mayo GI, explained that this really affects j-pouch function adversely. I take 5,000 units of vitamin D daily and have a reading in the 60's. My nutritionist says doctors are happy if you are in the low normal range of 40 but actually 80 is around the optional place to be. I don't know if that would help you or not. If your iron is low are they having you take vitamin C with it as it helps absorb iron better. I had to take iron after my surgeries. B12 is good too and best if you get the kind you place under your tongue and let melt. B12 shots are best if you are really low. I take a lot of supplements but for other health reasons as well.

Have you talked to your doctors at CC and told them your treatment plan isn't working satisfactorily? I email my doctor at Mayo or call his nurses with questions and get answers, usually when I am starting something new. It sounds like they need to add antibiotics to your treatment plan to see if they help, or do something else as outlined in the papers below. Remember I can't take Cipro because I get c.diff from it.

http://imedexinc.com/ei/confer.../091204-450-Shen.pdf

Above is a slide presentation of Dr. Shen's at CC, I just found where he specifies treatment for IPS that doesn't include antibiotics and is interesting.

http://www.practicalgastro.com...icle_ShenArticle.pdf

In the above paper under IPS treatments Dr. Shen talks about the kind of antidepressant you are on and he use of antibiotics.......so you can see they are all over the board at the Cleveland Clinic about treatment of IPS and the causes of it.

I think you shouldn't give up and go to a permenant ileo but go back to your doctor and explore some of these other avenues of treatment. After looking these up I'll be bringing some of them up to my doctor. One thing constant in the papers is his discussion of how IPS adversely affects our Quality of Life. I can attest to that!

It's back to UC days when we have a disease and there's no answer how to treat it, try this and it works for a while and then that etc. I was so ready for this to be all gone when I had the surgeries

I'm not ready to give up on my pouch yet as I know it's constructed well plus I have so many adhesions in my abdomen I'd probably still have my abdominal pain anyway! Let me know what you think

Debra - I feel for you too. Not a way to live either. I take a little portable bidet, squeeze bottle with long nozzle and a nice little carrying bag, with me anytime I'm going to be away from home for even a day. It sounds like you might get some help. Hopefullynby reading all the links I've posted in this thread you will figure out something that might help you. Sorry you are having a bad quality of life too. I was thinking no one else had IPS, so that's why I started the thread. I hope something in the articles can help you feel better

I can't say that any one pill is helping except the bentyl. I just is so baffling to me why I felt so good for 1 1/2 years and now this misery.
My leakage isn't at night but usually in the late afternoon while I'm at work. It's really hard being a salesperson on commission and having to leave the sales floor every 1/2 hour. ;/
Hopefully my dr will have some suggestions when I see him Tuesday.

res,
My Dicyclomine is generic for your Bentyl and it messes with my vision. Ask your GI about Loperamide prescription Imodium, it is easier for me to control it. It's in capsule form and gets in my system faster, than OTC Imodium, so I like it better. Bently slows things down too but loperamide might be better to use for that particular time of day and you can take a couple an hour or so before all the trouble usually starts to see if it works. I know the feeling of leaving a client. When I had UC I use to have to excuse myself from my clients to go to the restroom, I was a CPA preparing their taxes, embarrassing! Now I can't even work...that's another story.

You might want to look at the testing paper in the first link of this thread. IMO they have such small groups of j-pouchers to study they can't gather reliable data to figure it all out. I have both chronic cuffitis and IPS and in that testing j-pouchers had either Pouchitis, cuffitis or IPS for example. Dr. Shen is the one that is testing and writing the papers these papers and he has different treatment plans in two different papers. For example one includes antibiotics and one doesn't. I hate using antibiotics but they do help and I end up needing to use them every 4-6 weeks.

Let us know what your doctor says.

I saw my GI today and am greatly encouraged that I have a treatment plan in place. We're trying two weeks of Xifaxin. He also switched my probiotic to VSL3. I haven't tried either one in the past because of how expensive they are, but he fixed me up with enough samples for two weeks. He also has a plan if neither of these help. I'm hopeful these will help!

I hope you see improvement! My insurance covers VSL#3DS, DS stands for double strength. It is the only prescription probiotic there is, that I know of. I checked with the insurance company and Walgreens, locally, to make sure they could get it for me before having my Internist write me the prescription. She if pro probiotic I was taking it before I went to Mayo. It takes Walgreens a couple of days to get it in each time I refill it as it's refrigerated and I think I'm the only one who gets it from that pharmacy.

I hope it goes away from your new treatment plan!

How are your symptoms different? What is your treatment?

Thanks for bringing up this older thread Art Mom.  My condition has twisted and turned and different from how it was in the postings above.  

 

I went on Amytriptylane which is the same as Elavil for my migraines in September 2014.  It not only got rid of most of my migraines but I didn't need to take the Loperamide, Imodium, anymore.  My Psychiatrist increase the dosage of it and I dropped one of the antidepressants I was taking.  So it was good for me - 3 conditions treated with one antidepressant.  I still used the VSL#3DS probiotics and occasionally antibiotics.  

 

After last Christmas, 2014, I went on antibiotics and rotated them as 2 weeks on Flagyl then 2 weeks of Augmentin.  In February I had a balloon dilation of the Efferent Limb, the short side of the "J" at Mayo.  Xifixan and Augmentin are the 2 antibiotics I am rotating now as the Flagyl was making my neuropathy worse. (That's a different medical problem I have).  

 

The procedure didn't work and I'm going back in a few weeks for another pouchoscopy, with my GI - last time they got me in quickly but another GI did the scope and dilation.  He wants to see more than just the pictures taken during the scope.  He's also scheduled a surgical consultation.  I'm having a really rough time.  I'm using my bidet's "turbo" water strength to give myself enema's around 5 times a day.  We went out of town to visit my son and I gave myself tap water enemas. The bidet works much better.

 

So I don't know what's going to happen in the future.  I'm feeling really down about it all.  The last 4.5 years since my take down the end of 2010 has taken it's toll on me.  It sounds like a dilation should fix my problems.  The Feb. pictures were different when comparing to last July 2014.  That scope looked pretty good and was more of a flesh/red color.  The February ones showed mostly red in color - or pouchitis.  I had another test that looks from the outside.  They filled up my pouch with contrast and then took x-rays. That showed the inflammation as well.

 

I had IBS with my IBD and now I have IPS with my chronic cuffitis and chronic pouchitis.  Plus my j-pouch is large.  I don't know how that happened but am guessing there was room for expansion as I no longer have my uterus.

 

What was working for me above isn't anymore.  My thyroid is bonkers again and Dr. Loftus wants it under control.  It affects every cell in our body.