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it just kind of occurred to me reading the threads ips sounds a lot like sibo ..treated with imodium,antibiotics and shows no inflammation in pouch..and i would think like sibo it responds well to diet changes..so unless one is tested for sibo can it in fact be ips?dr. shen said i had sibo is there some other difference i am missing between them?and does it really matter if treated the same?

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I just wrote to your comment about this on another thread. There must be a difference as Dr. Shen has written papers about IPS, I read one specifically about IPS when I received my diagnosis and treatment plan from my Mayo GI. So I think there is a difference but you'd have to ask Dr. Shen that.

SIBO, IPS and Pouchitis are all treated with the same antibiotics, only chronic pouchitis is treated all the time with antibiotics. I don't know if my pain and other symptoms are the same as yours. I also have chronic cuffitis and before that was under control I could not tell the symptoms apart. I know now they were worse with cuffitis.

I have a copy of Dr. Shen's paper on my hard drive, about IPS treatment with antibiotics. If you want to read it and can't find it on-line I'll look up the link again for you.

On a side note. My husband went with me to an IBD 2014 update conference at a local hospital a week ago. They had both a GI and a Surgeon talk at length about UC & Crohns and the related surgeries. The surgeon had a power point presentation and described the j-pouch surgery well. He went on to discuss pouchitis ....Then he jumped on to crohns surgeries. I understand he didn't have time to discuss everything that can go wrong with j-pouches BUT felt he did a disservice to UCers that were sitting there that might be contemplating the surgery in the future. Both he and the GI said they had all of their J-pouch patients take VSL#3. I found that interesting since the GI was my former GI's partner and my former GI said nothing to me about it. I wish he had when a long time ago when he was prescribing prednisone going forward!
TE Marie
There is a sentence in Dr. Shen's paper that reads as follows.

Currently IPS is a diagnosis of exclusion based on the presence of symptoms of increased frequency of bowel movement with change in stool consistency, abdominal pain or cramping, and perianal or pelvic discomfort in the absence of endoscopic and histologic infammation. "Red-Flag" symptoms and sign such as nausea, vomiting, weight loss, fever, bloody bowel movement, and anemia are NOT consistent with IPS
Occasionally patients with celiac disease or proximal small bowel bacterial overgrowth may have similar presentations.....(as IPS)"
So there's the non answer to your question.

Before all of this it says that IPS pathology is multifactorial, patients using antidepressants or antianxiety agents would have a higher risk of having IPS, maybe having IBS before the surgeries is an indicator of having IPS after .... that Molecular mechanisms of IPS warrant exploration...... increased numbers of serotonin-expressing cells in the pouch mucosa has been demonstrated in patients with IPS, indicating a possible role of overactivation of the neuroenteric system.

It looks subjective to a point but there are tests to rule out celiacs and sibo.

There are so few of us with j-pouches there are not enough of us to test in order to have proper control groups in my opinion.

BTW in the summary it says: "Patients with inflammatory and noninflammatory diseases after IPAA often present with nonspecific symptoms that compromise their quality of life."

No kidding Confused
TE Marie
Here's the reference I'm referring to, besides my doctor's treatment plan for me:

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


Above is an paper by Dr.Shen of the Cleveland Clinic and I've highlighted the page where he specifically discusses IPS and the use of antibiotics in treatment of it. Edward Lotus Jr., MD, Director, Inflammatory Bowel Disease Clinic etc. at Mayo Clinic and my GI has prescribed antibiotics for me to use in my treatment plan for IPS. I've had a manometric evaluation, as discussed in the article, and do not have that problem so pelvic floor dysfunction has been ruled out. As far as I know I do not have proximal small bowel bacterial overgrowth but I'm going to find out if I've been tested for that or if it's been assumed in my treatment. I think there is a breath test and I know I haven't had a breath test. I'm on SSRI antidepressants and Loperamide, prescription Imodium and if needed dicyclomine. So my treatment is not the same as described in the article.

Dr. Loftus also treats my chronic cuffitis.

I take Norco for nonspecific abdominal pain that is approved by Dr. Loftus.

The glaring fact is that no one is conducting big on going studies into IPS. There aren't 100,000 patients out here needing a new pharmaceutical developed for treatment of the condition. It is hard enough to even define someone with the condition let alone find enough people with it to conduct a double blind study to see what works and what doesn't work to treat IPS. It's all empirical and that's ok. I don't need all the i's dotted and t's crossed. I need relief and what I've been told to do is working for me. If someone else went to see the same doctor as I do had a similar problem he might have them do something different.

This is why we all need to find the best medical care that we can. My local GI sent me to Mayo as he could not help me get my cuffitis into remission. He did recognize I had c.diff and got rid of that. My surgeon had recognized the cuffitis but missed the c.diff. He's a good surgeon but in my case not what I needed for problems after. We need to be our own advocate in our health care. We are alike but we are all different.

BTW antibiotics do get rid of IPS and I haven't taken them for 6 weeks. I only take them when the rest of the treatment plan is no longer working.
TE Marie
From what I read in the link, TE, it is only that some patients report improvement from antibiotics when they have IPS. Dr. Shen goes on to say that this can be explained by the fact that they may also have bacterial overgrowth. To my understanding, this means that the antibiotics do not treat the IPS, but the bacterial overgrowth. It is the dietary modifications, antispasmodics and antidepressants that treat the IPS.

The main thing is to understand that you can have more than one disorder, with overlapping symptoms. Sort of like my husband has both UC and IBS. His UC is fairly mild, but the IBS drives him nuts. I never had IBS symptoms, but my UC was pancolitis and severe.

Sure would be easier if it was not so complicated.

Jan Smiler
Jan Dollar
Jan,
The article says IPS responding to antibiotics responding "MAY be explained" because some patients have small bacterial overgrowth. It doesn't say it is ALWAYS explained because of it.

It is important for me to clarify this as I've gone through the testing. I eat the suggested low fat, low carb, no caffeine, no alcohol, avoidance of most dairy as I use almond milk. I do eat cheese and Greek yogurt but they are lower in lactose. My protein powder is plant based with no lactose. I have been tested for pelvic floor dysfunction. Everything discussed in this article. If I had small bowel bacterial overgrowth I would have been told and I would have no problems with having it! It would be "better" to have that than to have IPS. My diagnosis is IPS and occasionally I take augmentin for it.

As quoted above your post they have not studied IPS. There probably is a cause, in the mucosa? in serotonin levels? who knows? The treatment plan I'm on is what it is. I am grateful because I've come light years from where I was several years ago when I didn't know what was going on. Everything hassimilar symptoms, pouchitis, cuffitis, IPS, c.diff etc. In hind sight I know I had cuffitis & c.diff at the same time and I probably had IPS as well. It took a long time to get everything diagnosed and under control. Even now nothing is ever under control all the time. It's been a big trial and error of what foods can I eat and what can't I eat. I envy those that can eat anything and feel for those who can't eat as varied diet as I do.

It's depressing, exasperating and painful. Thanks for all of your help Smiler
TE Marie
thank you ladies for your dialogue on ips..what is clear is one can have more than one thing going on and many of symptoms are similar in ips,pouchitis,bacteria overgrowth and so on..and moreover even with all else being equal we patients are all different in what works or does not..

and furthermore with our various intestinal issues we have no choice but to be our own best advocates ..its not simply go to doctor,take this and bam under control kind of thing..
R
Yes. I do believe that since there are a variety of causes for similar symptoms, there will be inconsistencies in diagnosis accuracy. In many cases, there probably is an assumption of pouchitis before there is a firm diagnosis. Especially if a benefit is seen with antibiotics, further exploration may not be warranted.

I do know that antibiotics are not recommended for IBS, even though it is known that there is often an imbalance of the micro flora/fauna. A lot of the research and marketing for probiotics is for IBS. So, it is definitely a factor. There is also research showing that IBD is associated with low probiotic levels in the gut.

What does this all mean? It means that we are complicated, and like Rebecca says, we need to be our own best advocates. You have to keep track of what works for you. The doctors just go by what works for the majority.

Jan Smiler
Jan Dollar

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