Full-body flare--now what?

[JenniferS]

Yes, whenever I come here, I come to complain. lol I'll admit, I'm beyond frustrated. I see so many of you able to manage symptoms by eliminating foods, and I wonder, why is that not working for me?

Besides my lymphocytic colitis, I have raynaud's. I'm on a very limitted diet and have been for some time (no fiber, dairy, soy, eggs, fructose, or gluten--really, I eat a handful of things.) I'm on the full does of budesonide. Every time I try to taper off it, I flare. Whenever I try to add food back in, I flare. And even on the full dose, I take at least 2 pepto and 2 immodium a day. And right now, I'm flaring on my full dose, hyocyamine, pepto and immodium. I also get intense joint, bone, and muscle pain. Not all the time, more like in waves. It feels kind of like a severe case of the flu and remnds me of a time when I had strepth--it felt like my bones were on fire. My fingers also get stiff and will throb or itch (along with my feet), and sometimes will throb or itch at the same time. My husband thinks the hand pain is from typing (I'm a writer). I suspect it's from the raynaud's as that appears to be acting up.

Honestly, it seems like I have some sort of bacterial infection, but my GI says if I had, they would've found that.

Last night was rough. My dr. prescribed Tramadol. When the pain hits, most of the time, I push through it as I've come to learn it won't last forever. And I'm worried Tramadol could be habit forming. But I took a pill and tylenol last night.

I've been tested for lupus, ceoliac, and ms. All negative. Although my GI suspects ceoliac and indicated my meds might have skewed the results. But it seems since only a fraction of budesonide is absorbed, systemic--meaing, only a small amount is absorbed in the blood, it shouldn't mask anything.

Not long ago, I had eye pain and vision problems. Went to the eye dr. and he said my right eye had deteriorated significantly and wrote me a new prescription. The vision problem lasted maybe a month, but now I am fine. I still struggle with vertigo and had a week where it was so intense, I vomitted chronically, then took a motion sickness pill, and the vomitting stopped.

I have a burning in my stomach that is almost chronic, nausea often. Very discouraged and frustrated to say the least. I've mentioned this before, but in 2009 I was consistently training for triathlons (sprints). My last race, I placed sixth in my age group (30-36) after a five minute transition where I made a desperate bathroom search. lol By Oct. 2012, it seemed everything had fallen apart and I felt like death warmed over. And I can't figure out how to kick this.

Am I the only one unable to manage my symptoms by diet and budesonide?

[UkuleleLady]

I wish I had something to offer you, Jennifer, other than my sympathies.

Are you under psychiatric care? I recently started taking elavil (5mg), then switched to remeron (7.5mg). They are both tricyclic antidepressants that help modulate the digestive tract. I was indeed better on budesonide and through dietary changes, but felt I needed a little help with motility issues. I'm doing soooo much better now. I am off budesonide (knock on wood), but I know that if I didn't have the antidepressant to help I would still be spinning my wheels.

I just wonder if something like this could help you, or even something like an emergency med such as a valium or klonopin to help with the anxiety of it all. I have panic attacks myself and I know that they feed into my gut issues.

I would not worry about developing any dependencies (tramadol) right now, and get as much rest as possible and try to be kind to yourself.

[tex]

Am I the only one unable to manage my symptoms by diet and budesonide?

No. You are definitely not the only one. Some of us do have additional issues that can prevent us from reaching remission. The most common one seems to be mast cell activation disorder (MCAD). Not only does your lack of success at achieving remission by diet changes and the use of budesonide suggest that you may have MCAD, but the itching in your fingers and feet are strong markers of MCAD. Your symptoms could also be due to a more extensive mast cell issue, namely mastocytosis (systemic mastocytosis). Because you have mast cell issues associated with MC, that suggests that you might have mastocytic enterocolitis (ME).

So the first thing to rule out would be ME. If I were in your situation, I would ask my GI specialist to request that a pathologist re-examine my colon biopsy samples (that your LC diagnosis was based on) after staining them with a special tryptase-based stain (that will make mast cells much easier to see) in order to rule out mastocytic enterocolitis. Pathologists virtually never check for ME unless the GI specialist requests it, because that procedure requires a special stain that many labs do not even routinely stock. I'm pretty sure that if the pathologist does that, he or she will find an elevated mast cell count, diagnostic of mastocytic enterocolitis.

After that, you might want to try to rule out systemic mastocytosis, but unfortunately there are precious few specialists who are qualified to do that, and most of them are either located at Brigham and Women's Hospital in Boston, or they were trained there. Most members here who have these issues end up pretty much treating themselves with antihistamines, because of the limited medical expertise available.

What I'm saying is that it's very possible that your mast cell issues may be the primary cause of all your symptoms (even including the eye problems). If you happen to have a copy of my book, you can find more information on these issues in chapter 14. If you don't have a copy, I'll be happy to email you a PDF file of that chapter, along with all the references, that you can read on your computer monitor.

Tex

P. S. Regarding the tricyclic antidepressants that Nancy mentioned, medications in that class are powerful antihistamines, and IMO, that is why some members here have found them to be helpful in controlling their GI issues. Some members use ordinary OTC H1 type antihistamines with good results. The combination of the burning in your stomach and nausea suggests that excessive mast cell activity is causing your stomach to produce too much acid. In that situation, an H2 type antihistamine would be called for.

Examples of H2 antihistamines include:

Tagamet (cimetidine)
Pepcid (famotidine)
Axid (nizatidine)
Zantac (ranitidine)

[JenniferS]

Thank you both.

Nancy, no, I'm not under psychiatric care. I'm not anxious or depressed, more frustrated. I did try citalopram, was told it would help, but I worried it was the cause of my cns issues, so I stopped. I will ask my dr. about that.

Tex, I do have your book and really need to read it. I'm always a day behind, and I know I need to pause, educate myself, heal... Deadlines make that hard. lol (I have numerous now--an 85,000 word novel due to my publisher Dec. 1st, documents waiting for my edit, article deadlines, and books to read and endorse for writing friends.) But thanks for giving me a specific chapter. I can read that. :)

I will also copy and paste the info you provided and will talk to my GI about it. Thank you very much. My dad thinks I might be allergic to plastic. He is, and he got to the point where he was in chronic pain and had bone growth on his hands. He moved to Uruguay and everything cleared up. He eats all organic as well.

[tex]

Jennifer,

Regarding your dad's allergy. Yes, it's possible for many other things besides food sensitivities to trigger mast cell degranulation for someone who has MCAD or mastocytosis. Medications are also a common cause, and quite a few members here find that even such diverse influences as exercise, exposure to sunlight on skin (or the eyes), taking a hot shower or bath, inhaling certain scents or vapors (many of us react to strong chemical odors in stores, and Walmart is frequently mentioned), and avarious other environmental items can trigger reactions.

This can even lead to dermatomyositis, which I have a hunch may be more commonly associated with MC than is recognized. Zizzle, for example, has been diagnosed with it, and she appears to react to virtually all of these stimulants and she also reacts to nickel (as in rivets or buckles, etc., used in clothing).

Tex

[JenniferS]

Thanks, Tex,

We all appreciate all the time you take to help us all. :) God's abundant blessings on you!