Some doctors are like that. What can i say my doctor is the same way. I told him I've been having back pain everyday and he cut my pain med in half i don't no why but they just don't understand. Im changing him soon. We need a doctor that listens to our problems just like Jan said a good doctor always listens to his patients. Most of the time we no what helps us and what makes matters worse. Good luck. I hope u find a better doctor.

I go over vitamins with my Internist and Nutritionist Chiropractor, her BA was in nutrition. You would think your GI would be concerned as they are the ones that can have a malabsorption specialty. You were right to expect what you did. My GI usually refers to my latest blood tests ordered my my main doctor.

When I went to the Mayo Clinic, because my local GI didn't know how to treat my cuffitis, after it didn't go away for 4 months, my GI there ordered a lot of blood tests. He caught that I was getting too much thyroid medication but didn't prescribe a decrease, he had my Internist do it. FYI - thyroid problems = GI problems too.

I don't take liquid vitamins but I take them 2 different times a day. Please make sure you D and B12 are tested, along with your Iron. Also my Internist had me take extra vitamin C with the Iron supplement, as it helps it absorb better. Some on here take chewable vitamins.

*sigh* I had huge hopes this time. I have yet to find a doc that is the right fit.

I am going to roll with her for now since she is making sense in terms of testing/diagnosing for what might be going on with my pouch. She is definitely working on a probationary period with me though!

I will look elsewhere to get what I need for blood tests and vitamin recommendations, I guess.

I fail to see how cuffitis would interfere with absorption of nutrients. It is just the last centimeter or two before your anus, and virually all of the nutrient absorption occurs in the small intestine, not the rectum. Pouchitis might interfere with some absorption, or of you had Crohn's. Severe diarrhea could interfere too, but not the cuffitis itself.

Whether or not a different form of multivitamin would make any significant difference for you, I have no idea. But, testing for specific deficiencies make sense. That way you know how to proceed. Otherwise, you are presuming a problem that may not exist.

I've had chronic cuffitis for well over a decade (now in remission). I never had any vitamin deficiencies other than vitamin D. I think folks tend to put too much emphasis on vitamins as a solution. It may be an issue for you, but only testing will reveal it.

Jan

Thanks for the reply, Jan.

In one of your prior replies to me in another post, I believe you said often GI's will try a course of antibiotics to rule out pouchitis before going to an invasive procedure.

I would think it would be the same for cuffitis, no? I asked her about it and she gave me a flat "no". She said she wouldn't want to mask anything with treatment and the "proper" thing to do is a full scope exam to see what is going on....and then proceed.

I guess I get that, though I'm not thrilled about it. What do you think?

I agree to having a full flex j-pouch scope. My GI did one when my surgeon didn't. He did the necessary biopsies of my cuff, the rest of the pouch and above the pouch into the small intestines. The pathology report really does cover it all. Like specifically saying it was UC at my cuff and hardly any inflammation elsewhere.

I had gone through a round of Flagyl a few months before, in case it would clear up Pouchitis, which ended up not being my problem.

A short course of antibiotics would not mask cuffitis, since it does not really treat it. It can improve the symptoms, but they return as soon as the antibiotic is stopped. But, I can see why she'd want to see your full blown and untreated inflammation. That gives her a starting baseline to guage improvements.

So, there is two ways to look at it. You can have a trial of antibiotics and if that takes care of business, and you assume it was pouchitis or bacterial overgrowth (which would not show up on scope anyway). If it is not effective, then scope. The other way is to just go straight to the scope, with the feeling that this gets diagnosis and proper treatment going right away, and avoiding a delayed diagnosis.

However, often there is a delay just to schedule this scope, and you are left suffering while you wait. I guess I was lucky. When I returned after antibiotics did not provide sustained remission, my GI did a flex sig on the spot (guess he had a slow day). My pouch looked fine, but my cuff was a mess. The scope was mostly to check out the pouch, because he knew there was cuffitis from the digital exam (the rectal mucosa feels "bumpy" to the touch, and there was blood). Biopsies confirmed what was known.

I believe you said you also had a stricture, so that could prevent diagnosis of cuffitis by a digital exam (if the examining finger cannot get past the stricture to the rectal cuff). Again, I was lucky. Never had a stricture.

Jan

There are afew things I failed to address about vitamins. I didn't mean to imply that vitamins are not useful, but mainly, you cannot assume it is a vitamin issue. Of course, the vitamin companies would like us all to believe that we can't get what we need from food, but it generally is not the case (kind of like a few chiropractors feel everyone needs regular adjustments).

Anyway, it makes the most sense to me to take care of one thing at a time. If you make all sorts of changes at one time, you can't know which treatment is effective and which is doing nothing. It is common for people to think low energy is due to a vitamin deficiency, but if you have chronic inflammation anywhere in your body, THAT can be the source of chronic fatigue. All the vitamins in the world will not help until the inflammation is addressed. Once you get that straightened out, then you can look at what supplements might be useful for you.

Your primary doctor can order screening tests for vitamin deficiency, but still, it might make sense to wait until you get the pouch/cuff issues sorted out. It is possible that if your gut inflammation is improved and your transit time slowed down, nutrient absorption may improve by itself. But, with things like iron, folic acid, vitamin D, and B12, you may want to get a head start, because they can take a while to get back on track. Plus, you may find out they really are not an issue, and then you can focus on other things.

Take care.

Jan

P.S. When all is said and done, you can fiddle with your vitamins all you want, as you don't need a prescription or doctor's permission to do it! Just don't go crazy and overdose on them.

Hi Jan,

Why do antibiotics seem to have a salutary effect on cuffitis? In the past, I've been simultaneously diagnosed with mild pouchitis and moderate cuffitis, but all my symptoms resolve with the use of antibiotics. The cuffitis has always been the greater of my problems and it often comes back once the antibiotics are stopped (but now for some reason I've been doing fine without any meds). I can't tolerate mesalamine or steroid preparations.

Cuffitis' response to antibiotics seems to suggest that bacteria somehow contribute to cuffitis. Either that or antibiotics exhibit their anti-inflammatory effects via other pathways.

Good question, Jon! My cuffitis symptoms improved with antibiotics too, but returned after they were stopped.

There are a couple of reasons this can happen. One is that regardless of whether or not you have pouchitis or bacterial overgrowth, antibiotics can thicken the stool, and that by itself can be a big, big relief when you have chronic diarrhea. This happens because a large part of feces is bacteria. Kill bacteria, and you have less bulk.

Another reason is that antibiotics are used for treating Crohn's and even UC sometimes. The thinking I believe is that IBD can be an inappropriate inflammatory response to bacteria (or a virus in some cases) that runs amok. Antibiotics may help disrupt that cycle.

And why would your cuffitis stay in remission now off antibiotics when it did not before? Well, the nature of IBD is relapse and remission that is unpredictable. Sometimes remission is just spontaneous, no matter what you do. Maybe in your case the bacteria was supressed long enough that was all that was needed.

But, just when you think you have it all figured out, here comes the next relapse, so who knows?

Jan

Jan, you reference a study a few days or so ago about cuffitis. a 50/50 refractory problem and the possible linking cuffitis to other causes. (I may be running two articles together.)

I'm a bit deflated as today was my last of the 10 day Flagyl. I think I had/have another c-diff infection on vacation and my Internist called in the prescription. I've been feeling much better the last few days so am keeping my fingers crossed. According to what you said above, the flagyl could have helped my cuffitis temporarily. I guess the next few days will tell.

I think that article was about refactory cuffitis (that does not respond to 5-ASAs or steroids.

Whether antibiotics actually treats cuffitis or not, I'm not sure, but I know it is not a primary treatment. More than likely, it just improves the symptoms temporarily.

Jan

Jon1985, how are you treating your cuffitis? I was instructed by Dr. Loftus at the Mayo Clinic, to keep taking the Canassa until it went away and to keep doing a maintenance dose every other day then to twice a week thereafter. I'm back to treating it nightly.

How was it determined that you didn't respond to Canasa? My concern all along has been my UC quit responding to it before I had my surgeries so why would it work now. Jan said now it is topically applied to a tiny area and should work better. We must have a zillion nerve endings there as that 2 cm can become very painful.
Thanks

Jan, Is that what Jon is talking about since his cuffitis doesn't respond to those treatments? Sorry, I just don't know that I ever really got into remission. I'm so miserable most of the time. I need to call Dr. Loftus's nurses if I turn south again. No since sticking around here if I'm going to be miserable another 6 weeks.

Marie,

I don't treat my cuffitis with any of the standard methods. I can't take Canasa because I am allergic to mesalamine. When I was sick with UC and on Asacol (which did nothing to help me by the way), I developed a serious hypersensitivity reaction and now most doctors are averse to having me take the drug in any form. I'm also very sensitive to steroid preparations, as they give me terrible acne. It's just not worth it to trade cuffitis for acne that is so bad that I hate going out of the house, especially since the symptoms just reappear once the steroid is finished. I know that there are generally fewer systemic side effects with topical steroids when compared to oral ones, but the topical ones still give me problems.

I've really tried to find other ways of helping my inflammation. For instance, I've suffered from eczema for many years, and I've noticed that specific foods, especially dairy, exacerbate it. As a result, I started to wonder if some protein or proteins in dairy interfere with the tight junctions in my skin epithelial cells, thereby making them more permeable and open to inflammation. Since the intestines are also lined with epithelial cells, I tried applying the same logic there. It seems to help, but there can be any number of variables affecting the inflammatory process, so Jan is right in saying that things can flare back up for seemingly no reason at all.

I really do think that there are things in our food, water, air, etc. that are behind the massive rise in immune system diseases. It seems like more and more people are getting some sort of chronic disease, much to the satisfaction of pharmaceutical companies.

A salient question is whether our bodies are continually reacting to entities that it perceives as foreign (because they are truly bad), or have there been permanent changes in our DNA which lead to improper inflammatory responses?

I understand your theory. I refused to take Prednisone ever again the first and only time I was on it for 6 months, starting at 60. 10 years later an endocrinologist told me something in my blood work looked like I'd just quit taking it a month before. My GI quit suggesting it after a while and I was diagnosed for 13 years before I had my surgeries. I need to go back to him and see how things look now. Asacol quit working for me and I believe Canasa isn't getting me into total remission. The Anucort didn't work at all.

Thank you, I was hoping you'd found a miracle herb or something that could help me

Jon, you are right. So many things come into play when it comes to autoimmune disease. Part of the challenge is the fact that the trigger(s) are not standardized, so you can't make a blanket statement that everyone should avoid milk products or wheat (although those proteins are common problems). On top of that, treatment is not universally effective. This is why it is so great that more and more treatments are being developed with more targeted and novel approaches (biologics). Jon, the fact that you cannot use mesalamine or steroids is limiting, but there still are things like Imuran and the biologics. Still, if you can function reasonably well with dietary limitations, I can see why you'd do that before opting for pouch removal or more potent drugs. Plus, you can always fall back on antibiotics. Since I needed biologics for my arthritis, I was able to also get the benefit for my pouch and cuff too! I suppose I could have tried the diet thing, but I guess I just am not disciplined enough...

As to why the rise? That is a question with much debate right now, and I suppose it will wind up being a combination of things, including the fact that people (and their DNA) are surviving when a generation or two ago, they would not. This is not just IBD sufferers, but diabetes and more. Yes, diabetes is now known to be autoimmune. And who knows how these diseases intertwine? I imagine prolonging these lives does weaken the gene pool. Certainly, there may well be something in our environment now that was not there before, but I suspect if it were not one trigger, it would be another.

I used to think that perhaps it was mostly an issue of increased awareness and documentation, but it seems that there truly is a rise. They are learning more and more all the time and there has been an explosion of knowledge in the past few decades. I am very encouraged.

Jan

Hi All,

Thank you so much for all the replies. I have been reading/lurking the last few days bc I've been on info overload and still very tired. Plus I've been running around to doc appts and labs.

I saw my psychiatrist on Thursday and she's great about getting labs for deficiencies. So I went to the lab for that yesterday and will see the psychiatrist again on Monday to review the blood work results.

Jan, I understand what you are saying about not jumping to vitamins with the assumption that is my problem. I'll take the lab results as food for thought until I get the scope done.

Fortunately, I've been able to schedule things quickly....What a blessing! The scope is scheduled for Tuesday so hopefully I will know what's going on pretty fast.

On another note, since finding this forum over a week ago, I started immodium and Gas X religiously. I've tried it before with limited success, but I wasn't as consistent with it as I have been this time.

I am finding HUGE success with it. BM frequency is way down, not much leaking and only one accident while asleep. I think the accident may have been bc I didn't empty before falling asleep sitting up. Oops!

So I am hoping this may be the answer to much of my problem. But, my question is, could the immodium and GasX just be masking cuffitis? What do you think?

Oh, also, sorry....this is a little gross....I went to the lab for a fecal culture. Now, I don't generally get up close to my output, other than checking the bowl. However, I got a good look while collecting the sample. I noticed it was gelatin-like, perhaps mucousy? I am not sure if it's always this way or maybe it's due to the immodium. Should I be concerned? Would immodium do this, like thickening?

I doubt Imodium and GasX would ever mask cuffitis. I have too much cuffitis (UC) experience. The thicker the stool the more cuffitis would hurt IMHO. Since the cuff is right at the back door all stool passes through it on the way out. It's inflamed. On the other hand watery D would hurt.

I also think pudding like stool is what you are experiencing and hoping it's not anything more than that.

Good Luck on your scope!

P.S. You might want to try superdigestive enzymes vs gasX.

Thanks, TE Marie. That is very encouraging.

The crazy thing is, about the last 3-4 days I've been feeling better than I have in the last few years. All I can think of is that I've been eating low carb for years (which has helped with bloating and general dicomfort), along with the addition of Imodium and Gas X about 2 weeks ago. I also added Culturelle 4 days ago. Is that what you mean by superdigestive enzymes? Additionally, the GI said I could take Imodium up to 4x's/day versus the 2x's/day I've been doing. Two days I did take it 3x's/day and it was almost too much; I couldn't eliminate as easily. Maybe it's just that I'm not used to going so little, lol. I have gone from about 10-20 BM's/day to 5-6 BM's!

Anyway, last night I slept like a hibrinating bear. I didn't wake up once and had no accidents. Normally I am up repeatedly and have leakage. Actually, I haven't had leakage in many days where normally I leak many times/day. I have been so sleep deprived for so long, which obviously affects quality of life. It was a blessing to sleep last night!

I am so grateful, but it's like when you call the repair man and suddenly nothing is broken, lol! I have a full scope on Tues.

She plans on checking the small intestine, too. She is looking for overall health and to check for possible cuffitis, crohns, health of the pouch, etc. She did discover a stricture last week. At this point I am willing to go for the scope bc I am very overdue. However, I don't want her to mess with the stricture with dilation. I don't want to fix what's not broken!

I just hope to get a clean bill of health and then get on with why I am low energy and figure out what supplements I need.

Sorry this got so long.....

I'm glad you are feeling better!

You might not need digestive enzymes, the are not probiotics which is what Cultural is. They are good to be taking to. Digestive Enzymes are called that. I've tried several brands and they are called Super Digestive Enzymes, in place of the Beano I was taking. I quit taking them last May, but they did help me right after I got my pouch two years ago. Probiotics are great for your pouch.

Disappointed. My blood results this morning are all normal, except Vitamin D deficiency.

Well, I know that is good but I am disappointed bc it doesn't explain why I am always so sleepy and worn out.

My psychologist suggested it may just be due to regular disrupted sleep to go to the bathroom and wear and tear of being in regular pain from the incontinence.

I can say that I have had some relief with the addition of the immodium, GasX and probiotics. I actually slept through the nite for 2 nites in a row. That certainly helped.

So on to the GI doc for a scope exam tomorrow. I'm still going to get the easily digested vitamin everyone talks about in here...the name escapes me at the moment.

Kia,
Sometimes it is a combination of a lot of factors...general systemic exhaustion post disease/sugery/convalecence, diet, sleep deprivation and PTSD...it does not have to be just 1 problem and often requires a multipronged solution (diet, exercise, sleep (lots of sleeeeeep), suppliments (not all vitamins have to be at critically low levels to have a negative effect on you), dehydration, meds...).
We have all learned here that there is rarely ever a single magic bullit solution...keep searching and keep a diary on what and when you eat/sleep, what you do (activity levels), meds etc and see if you can't find a corelation somewhere along the way...
Sharon

Thank you, Sharon. You continue to give me hope.

After I got the results, I had a momentary feeling of "maybe it's just in my head or I'm being lazy." I snapped myself out of it, though. I am not going to buy into that anymore.