Discouraged and depressed

[robinc2525]

Feeling pretty hopeless tonight. I was diagnosed with MC 2 months ago. Tried lialda for a month which seemed to help for about a week then stopped. Started Uceris which I have been on almost a month and still have loose bm's every morning or D. I had already cut out gluten and dairy (end of Feb) and I have cut pretty much everything else out now too and am only eating a few different meats. I cut so many other foods out based on a food sensitivity test i was had done (Alletess/igg testing). Today I saw my Naturopath and she suggested I have a test for SIBO. I looked that up and I feel like it's near impossible to get rid of it long term if you have it. I don't want to fight this forever. If I was cutting all this stuff out and seeing results it would be one thing, but to still have D every day is awful. I have spent 10,000 in 3 months and feel like I am no closer to getting better. I don't know what to do.

[carolm]

Robin,
I'm sorry you are going through that, although I completely understand how you feel. Just 2 months after my dx I was still sick, dizzy, etc.

Have you ever been on Entocort (budesonide)?

Carol

[robinc2525]

Yes Carol, Uceris is a form of budesonide. I don't understand why if MC is causing the D, why the medications don't seem to work for me. Or why the diet changes haven't helped. I feel like there is another cause for my symptoms that isn't being treated. I have discomfort under my right ribcage (which I also feel in my back) and when that feels worse the D gets worse. My gastro said we can check gallbladder but even if it's bad, that wouldn't cause D. I had an ultrasound which showed nothing and the next test is an MRCP to look at it closer. So difficult to figure all this out.

[tex]

Hi Robin,

Welcome to the board. I'm sorry that you're still not seeing any improvement. It's past my bedtime, but I have a couple of quick questions. Are you taking any other medications, such as NSAIDs, PPIs, SSRIs, SNRIs, bisphosphonates, statins, beta blockers, antibiotics, or herbal treatments? Are you avoiding soy and all it's derivatives (including soy lecithin and soy oil), and all legumes?

Tex

[robinc2525]

Hi Tex, yes I avoid soy and legumes. I literally am only eating ground turkey, chicken, haddock, salt, pepper and olive oil. Regarding medications/supplements....I have taken a good probiotic (no allergens) the whole time, before and after diagnosis. A week ago I started a plan which includes the probiotic, HCL with pepsin, digestive enzymes and UltraInflamx (all with no gluten, dairy, soy, etc etc). It seemed promising for a few days (stools were more formed and less D but not "normal") and then things went downhill again. I am still on that plan hoping it needs time to work and will kick in soon. I read your book. I am so grateful for all that information, so thank you. Not sure why things aren't working. Is the discomfort under the right ribs a complaint you hear often associated with MC? It's just so weird because my gastro dismisses it as being relatated to the D, yet I know that when it is more prevalent is when the D goes from bad to worse. It seems to become more prevalent for no reason, no different foods introduced, etc. I just don't know.

[JFR]

Robin,

I would not use the UltraInflamx. For starters it has too many ingredients so if one of them is bothering you it is impossible to figure out which it is. Also some people are sensitive to rice (I am one of them) and it contains fructose which can cause problems and is one of the reasons that fruits are so difficult for many or us. Plus it has xanthan gum and guar gum which are problematic for some people. It is possible that there is nothing in this product which is causing problems for you but if even one of the ingredients is problematic it becomes impossible to figure out which one it is. That is why it is best to stick with single ingredient foods.

Many people here have problems with probiotics although, as with most things, not everyone. Also digestive enzymes cause difficulties for some people. I know that Tex had a terrible reaction to digestive enzymes. I would start by cutting out all supplements. Then I would test each protein you are eating by eliminating it to see if that makes a difference. I would give it 2 weeks although there is no hard and fast rule about that .

It is hard not to get impatient but unfortunately there is no quick and easy one size its all fix.

Jean

[Polly]

Hi Robin and

I agree with Jean above. At least initially, I would avoid all supplements, herbs, and probiotics. My MC has been in good control with diet alone for 12 years now, and the only thing I take is vitamin D3. BTW, it took me 9 full months to see a formed BM with diet. I have multiple food sensitivities, which took a very long time to tease out. The Enterolab tests are a great way to start, although it sounds as if you have already spent a fortune. Sigh. Does Immodium help control the D at all?

Re the ribcage pain, we have found that, initially, any part of the GI tract can be inflamed as well as the colon - esophagus, stomach, small intestine, gall bladder, even the pancreas. This is a fact that most docs don't know. Usually the overall inflammation improves as the MC in brought under control.

Don't give up. You WILL get better. You can't have enough patience when it comes to MC.



Love,

Polly

[tex]

Is the discomfort under the right ribs a complaint you hear often associated with MC?

That's a somewhat common complaint, yes. That's where your gallbladder is located. As Polly mentioned, it's common for various digestive system organs to become inflamed when MC is active. A few members have even had their gallbladders removed in such situations, but the good news is that in most cases, when the MC symptoms are resolved, the gallbladder symptoms will almost always fade away also, and gallbladder function will return to normal.

By the way, I agree with Jean and Polly that less is almost always better, when dealing with MC. The fewer ingredients we expose our digestive system to, the higher our chances of successfully achieving remission, and the better our chances of reaching remission sooner, rather than later.

Probiotics (according to the theory held by most GI docs) should be beneficial for treating MC. In the real world however, we find that very few of us are actually helped by probiotics while we are still reacting. After we have been in remission for a while, we seem to be able to tolerate probiotics about as well as the general population. While our MC is active, though, precious few of us are able to find a probiotic that seems to be helpful. For many of us, most probiotics make our symptoms much worse, or prevent us from reaching remission. For others, probiotics don't seem to make much difference one way or another.

IOW, despite the glowing recommendations made about probiotics, our accumulated experience among the members here show that the risk/reward ratio is rather poor, as long as our MC is active. And after we're in remission, why rock the boat, because we probably don't need a probiotic at that point, anyway?

That said, if for any reason you need to take an antibiotic treatment, be sure to take a good probiotic for at least a couple of weeks after the treatment ends, because the risk of developing C. diff in such a situation is too high to ignore, and the probiotic will help to prevent C. diff from becoming established.

The same applies to digestive enzyme supplements — a few people are helped, many are not. Back when I was still recovering, I decided to "speed things along" by taking an expensive blend of digestive enzymes. I took the first capsule before eating breakfast one day, and within half an hour, I realized my mistake. Within 2 hours, I had projectile vomiting, and after that I vomited again every few hours for the rest of the day (except that after about the second time, I had nothing left to vomit up, so I had the dry heaves. ). My stomach felt as if it were on fire. After about a day or a day and a half, I was able to eat a little broth, and the next day I could eat soup. It took four days for the fire to go out, so that I was able to get up the nerve to try some solid food. So that's why I'm not a fan of digestive enzymes as part of the treatment for MC. YMMV, of course, since we are all different.

And as Jean pointed out, many of us have problems with virtually all of the gums (most of which are legume-based) used in GF products. Xanthan gum is not derived from a legume, but it is made from the slime left over after a certain species of bacteria (Xanthomonas campestris) decompose a type of corn sugar, and apparently we are sensitive to one or more of the bacteria byproducts that are a present in that slime.

Tex

[robinc2525]

Thanks so much for your comments. I really appreciate them. I'll admit it actually make me a little scared to think of not taking a probiotic because I always read how good they are and been told I need them. But after reading your comments I totally think it's worth a try. It was the only supplement I was taking for 7 of the last 8 weeks, I can't believe it never entered my mind that it might be that.

I also will try testing to see if it's one of the proteins I eat. My igg testing indicated I was fine with them but I realize those tests aren't always accurate. I am thinking of doing the Enterolab tests which you all seem to trust. I am leary of more testing, as I said I've done a lot and feel like I haven't gotten much in the way of answers.

Yesterday when I saw my Naturopath she indicated that maybe the source of my inflammation was bacterial and not all food related. I have had bacterial imbalances in the past (last year) indicated by a CDSA. Is that something anyone has dealt with and had success with before?

I am feeling a little more hopeful today after my doom and gloom night. lol. It is difficult at times, as you all know. I have been working hard to figure this out and staying positive but yesterday for the first time I had a feeling of hopelessness like I might be like this forever and never get my life back. I am a single (widowed) mom of 2 young kids and I just want to go back to feeling confident doing things with them without these bathroom issues. It makes me cranky and irritable and I don't want to be that way. So I'll ditch the probiotic for a while and see what happens.

Thanks again very much-
Robin

[Leah]

Hi Robin. We all know how you feel. I know two months seems like a long time, but it really isn't when it comes to truly healing. I am past the i I/2 year mark and still feel like I have some more healing to do.

I agree with the probiotic thing. I have tried it three different times and all made my symptoms worse. Supplements are a sticky thing. Just recently, I started declining again and didn't know why. First i thought of mast cell/histamine issues ( look it up in Tex's book. You may have something like this going on with you)) and then it dawned on me that I had started taking an herbal supplement for peri-menopausal symptoms. it had no obvious ingredients that i couldn't have.

I wanted to nip this in the bud, so I took out all high histamine foods and started taking DAO. At the same time, I STOPPED the herbal supplement. A few days later, I started feeling better. i am back to only going to the bathroom once a day.

Speaking of going once a day.... you didn't mention how often you go. if you are only going in the AM, that is pretty good. Some of us suffer all day. Also, when it comes to consistency of your BMs, sometimes chasing the perfect, solid BM is more stressful then it's worth and maybe not as important as you think. We all would love to be "cured" or go into complete remission, but it doesn't happen for many of us. I consider myself in pretty good shape because i have been able to put some things back into my diet ( salad, beans...), can eat out (carefully), and can generally live my life without worrying about where a bathroom is. However, my once a day Bm is rarely solid and I have come to accept that. Sometimes the stress of having this disease can make it so much worse.

Hang in there. This usually doesn't get resolved very quickly. if you need to vent, we are here for you
Feel better soon
Leah

[brandy]

Hi Robin,

I was another one who had severe reactions to probiotics during big flare. Also ultrainflamx has way too many ingredients for us. Steer clear of anything with more than three ingredients.

It gets better, brandy

[carolm]

HI Robin,
I have never heard budesonide marketed as Uceris, but that does answer my question. You've gotten excellent advice here so I have nothing new to add. Like everyone else I'd pare everything back to a few basic foods, stop all the supplements, keep taking budesonide and see where that takes you. The simpler the better when trying to manage symptoms and heal. And it may still take several weeks, even with budesonide.

Hang in there.

Carol