New here and hoping for some feedback :)

[Lucy_B]

Hi, everyone! Wow, I am really glad to have found this fantastic support group. You all seem so dedicated to helping each other and figuring this thing out! I apologize in advance for the length of this post.

To give you some background, I had my first bout with chronic diarrhea for about 14 months back in 2004/2005. I was tested for everything (parasites, bacteria, etc.) before finally undergoing a colonoscopy that revealed apthous ulcers in my small intestine (which I had always also gotten in my mouth as a kid/teenager). I'm not sure whether MC was checked for at that time or not- it was never mentioned. At any rate, the doc said he thought I might have Crohn's because of the TI lesions and put me on Pentasa, but that didn't do anything. I think I tried Imodium, too- nada. Before the D started, I had been on and off of various anti-depressants trying to find one that would work (as my old one had "pooped out") and was under a ton of emotional stress between my flaring anxiety/depression and moving to a new state. I don't have much recollection of that time except that at some point I: a) got on fluoxetine, and b) eliminated gluten, dairy, and sugar for a period of time. Eventually, I started feeling much better and the D just stopped. In fact, it pretty much went in the other direction (with frequent C and minor fissuring), and that's how things stayed for about a decade, even when eating the aforementioned foods at once or twice a week. A different GI doc later looked at the images of my TI and said he did not think I had Crohn's, suggesting instead that it may have just been an extreme case of stress-induced IBS and that the lesions could have come from something else (perhaps even the prep drink I took before the procedure). So I moved on.

About 4 years ago, I gradually started to experience a number of inflammatory symptoms and began to feel that something was definitely "off". Sinuses constantly draining, bladder pain/inflammation, an enlarged lymph node (GP was concerned about that but ENT wasn't, thankfully), brain fog/fuzzy memory, weird itching, increased eye floaters, you name it. So I started taking some anti-inflammatory supplements- fish oil, turmeric, vitamin D, probiotics, etc.- and went back to a mostly GF/CF diet. Even tried strict paleo for a bit. But the inflammation persisted, and my anxiety progressively got worse and worse. In March of this year, I suddenly developed D after (I think) being exposed to a stomach virus. Unfortunately, it never went away. In May, I finally got another colonoscopy and was dx'ed with "severe LC" and "patchy erythema of unspecific significance" in my terminal ilium. The TI ulceration/inflammation was no surprise; the LC was. Receiving a definitive IBD/AI diagnosis plus the pain of some significant personal losses and other stressful life events at the time caused me to go into a tailspin emotionally. My doc suggested budesonide for the LC/TI, but I was so worried about worsening anxiety/depression from the steroids that I decided to start back on SSRI's instead (as I had been off them for a year or so at that point). I started with citalopram which caused horrendous side effects and then switched to fluoxetine, which I'm only just now starting to get settled on again. It's been a nightmarish past three months, to say the least. Unfortunately, even though I'm starting to feel a bit better mentally, the D is hanging on. I can somewhat control the severity/consistency with 4-8 Imodium pills a day, but everything still pretty much goes right through me, and I do not look/feel at all nourished or healthy. I'm definitely watching what I eat (for the most part) by avoiding gluten, dairy, sugar, corn, and soy. But the beast is still alive, and I cannot for the life of me seem to gain weight/keep weight on. Which makes me scared to incorporate too many food restrictions (like what's recommended by the AI (Paleo) Protocol, for instance). So...I guess my questions right now are:

1) Is it possible that I had LC which went unnoticed back in 2004/2005 and that it's been in remission all this time, even while eating things I'm probably sensitive to? Has anyone else experienced long-term remission simply by taking an SSRI? There are theories that SSRI's (especially fluoxetine) work by suppressing inflammation, so I guess it does make some sense.

2) Can LC (or CC) be triggered by an infection or intense stress and then resolve on its own after a period of time? Or is it truly an autoimmune disease that will continue to manifest throughout life? It's hard coming to terms with that mentally, especially b/c AI diseases usually beget others. I'm already having some AI thyroid issues (high antibodies which will most likely become Hashi's at some point down the road) and am nervous about development of MS.

3) The weight loss has gotten to the point where I'm pretty sure I'll need to try budesonide for a bit. Can anyone assure me that it's okay and will not cause problematic side effects? :) I think I'm so spooked b/c I had a bad reaction to prednisone a number of years ago and the thought of steroids has scared me ever since.

4) What do you think about skin allergy testing for foods? I have an appointment for a comprehensive allergy screening later this month, since I've never had one. Could this help provide any answers about what might be triggering symptoms? I know there's a theory that LC is caused by histamine, so I figured it might shed some light.

Okay, that was a really long post. :) Thanks so much for reading- I'm looking forward to being a part of this community!

[tex]

Hi Lucy,

Welcome to our Internet family. I'll attempt to respond to your questions:

) Is it possible that I had LC which went unnoticed back in 2004/2005 and that it's been in remission all this time, even while eating things I'm probably sensitive to? Has anyone else experienced long-term remission simply by taking an SSRI? There are theories that SSRI's (especially fluoxetine) work by suppressing inflammation, so I guess it does make some sense.

Like any IBD, MC can sometimes go into spontaneous remission, but it doesn't happen nearly as often with MC as it does with the other IBDs. I'm not aware of any member here who has gone into remission because of taking an SSRI. To the contrary, many members blame the development of their MC on taking an SSRI, and SSRIs are listed as a known cause of MC.

2) Can LC (or CC) be triggered by an infection or intense stress and then resolve on its own after a period of time? Or is it truly an autoimmune disease that will continue to manifest throughout life? It's hard coming to terms with that mentally, especially b/c AI diseases usually beget others. I'm already having some AI thyroid issues (high antibodies which will most likely become Hashi's at some point down the road) and am nervous about development of MS.

MC is very sensitive to stress, both for initial development of the syndrome, and for relapses of symptoms.

3) The weight loss has gotten to the point where I'm pretty sure I'll need to try budesonide for a bit. Can anyone assure me that it's okay and will not cause problematic side effects? :) I think I'm so spooked b/c I had a bad reaction to prednisone a number of years ago and the thought of steroids has scared me ever since.

All meds carry a risk of side effects, especially the corticosteroids. And we all respond differently to them. Budesonide is one of the "safest" (or rather, least-risky) meds available for treating MC, among those that are reasonably effective. It is far less risky than prednisione. Meds can mask the symptoms, but they cannot prevent the inflammation from regenerating. Only the proper diet changes can do that.

4) What do you think about skin allergy testing for foods? I have an appointment for a comprehensive allergy screening later this month, since I've never had one. Could this help provide any answers about what might be triggering symptoms? I know there's a theory that LC is caused by histamine, so I figured it might shed some light.

All of the skin allergy and blood tests available for testing food sensitivities are pretty much worthless for MC patients. The only food sensitivity tests that actually work are the stool tests offered by EnteroLab in Dallas, TX. We have found the EnteroLab tests to be accurate and reliable for helping us to develop a diet that will work for us personally.

The mast cell/histamine reactions that we have develop in the intestines, and the skin tests provide no useful information in most cases.

Here are links to some short articles that can help you to determine whether mast cell/histamine issues are part of your MC problem.

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Again, welcome aboard, and please feel free to ask anything.

Tex

[Lucy_B]

Thanks, Tex! Sorry for such a long-winded account of my history. I just feel like I've been trying to put together a 10,000 piece jigsaw puzzle on my own for 4-5 years now. I like/respect my doctors, but they don't look at the whole big picture (and that's of course a problem with western medicine in general). In addition to the LC/inflammation/random other health issues, I've also suffered numerous pregnancy losses, which our reproductive endocrinologist believes is most likely autoimmune in nature. It's been a really rocky road. With the SSRI's, I thought I read somewhere that a certain subgroup of people can sometimes benefit from them when it comes to inflammatory bowel stuff. But I might be mis-remembering. It's so strange, the D (both 10 years ago and now) started when I was off them. But fluoxetine seemed to help the first time around- go figure. My assumption was that being off the drugs caused a flare up because of worsened anxiety, etc. and that regulating mood helped to regulate the gut inflammation. At any rate, I am unfortunately someone who will probably have to take them for life, as I do not function well otherwise and alternative modes of therapy have not worked. It's a bummer. The involvement of mast cells is very interesting and makes sense. Are there any particular antihistamines that most folks here rely on? I tend to have psychological side effects when I take them (mostly increased anxiety/depression, brain fog, daytime sleepiness, insomnia, etc.). But I've only ever tried the anti-cholinergic ones, like Benadryl and Claritin. Maybe Zyrtec would be better? I think I will still have the allergy testing done (at least for environmental stuff), since I've never had one performed and my insurance will mostly cover it. But I am very interested in EnteroLab testing, as well. Problem is the expense- my insurance won't touch anything I have done at an independent lab. Damn shame. I'm assuming the best test to do is the Panel A1 + C1 for a non-vegetarian? Thanks again!

[tex]

Hi Lucy,

I agree that a general failure by doctors to consider more than just the one body system currently being considered for treatment causes no end of frustration for many/most patients. And over time, medicine seems to be leaning toward more specialization, rather than less. I suppose it makes physician's work much simpler, but it often creates unforeseen problems for many patients, especially regarding prescribed medications.

With the SSRI's, I thought I read somewhere that a certain subgroup of people can sometimes benefit from them when it comes to inflammatory bowel stuff. But I might be mis-remembering.

There are a few members here who have found that a low dose of amitriptyline (Elavil at 10 mg daily) helps to regulate their intestinal motility, but of course Elavil is not an SSRI. Since we are all different in our response rates to various medications, it's certainly not impossible that someone else might see a similar effect from an SSRI.

My assumption was that being off the drugs caused a flare up because of worsened anxiety, etc. and that regulating mood helped to regulate the gut inflammation

.

You are probably correct, because stress is very strongly associated with MC, and stress has been shown to result in inflammation.

The involvement of mast cells is very interesting and makes sense. Are there any particular antihistamines that most folks here rely on? I tend to have psychological side effects when I take them (mostly increased anxiety/depression, brain fog, daytime sleepiness, insomnia, etc.). But I've only ever tried the anti-cholinergic ones, like Benadryl and Claritin. Maybe Zyrtec would be better?

Many members here (including me) seem to get good results with Allegra. Some use the old first-generation antihistamine, chlor-trimeton (4 mg) with good results, but the effects only last for a few hours. Unfortunately the 12 mg version contains a dairy ingredient, so it's off limits for most of us, and of course it's also classified as an anti-cholinergic. Allegra is not an anti-cholinergic, if my memory is correct.

I'm assuming the best test to do is the Panel A1 + C1 for a non-vegetarian?

Yes, since most of us end up paying for those tests out of our own pocket, that particular combination of panels provides the most bang for our buck.

With your history, and considering the powerful effects that stress tends to have on MC, I have to agree that you may be right in thinking that you may need to continue to take some type of medication in order to minimize your stress level. Research shows that buproprion (Wellbutrin) tends to have a minimum number of significant side effects for most patients, and it's typically the least likely medication in this class to adversely affect MC. Of course as you are probably well aware, finding a med (and a dosage rate) that is effective for treating depression/anxiety disorders can be a very tall order, and many products do not work well for many patients. Apparently buproprion may be more effective at treating anxiety than depression, but the effectiveness probably depends on each individual case.

You're very welcome, and I hope that some of this is helpful.

Tex

[Erica P-G]

Welcome Lucy,
After following this post it should be mentioned that proper D3 an Elemental Magnesium need to be used daily until they are built up and begin to support the gut properly. They work in tandem and they also contribute to a well being feeling potentially allowing us to feel good an not need any antidepressant. I use a spray D3 6000 mg an morning an night magnesium oil spray from vitacost. It has taken a little over three months but by going GF, DF, SoyF, EggF and putting those two supplements in use I feel much better. I just recently tapered off my low doses of Estradiol an progesterone an I finally am not having D anymore. YAY!! Can't believe how one thing leads to another while trying to heal the MC. I should finally have a baseline now unless my body finds something else I've been using or eating to react to.

I do not take any meds, I suppose I would if I had more debilitating AI issues though, it will just take longer to feel better that's all.

Keep asking questions!
Cheers
Erica

[Lucy_B]

Thanks to you both! Tex, I did try bupropion back in the day and unfortunately did not have a good reaction. I just remember feeling incredibly panicky and agitated so my doc took me off of it. I've heard it tends to worsen anxiety in some people (which is mainly what I struggle with). I wish it would work for me, as I hear it's a good one! Erica, I currently take a D-3 supplement but haven't used elemental magnesium. Thanks for the tip! :)

[PamelaV]

Hi, Forum Folks,
Anybody have any suggestions on how to to prevent leg cramping? I stopped taking magnesium supplements after my recent LC diagnosis, and now I wake up every night with cramping foot and leg pain. I tried a Magnesium cream last week, but had a crazy hormonal reaction -- felt like PMS in a jar! Grouchy, short-tempered, hot flashy, sweaty. I know there are magnesium oils available, but am concerned I may have the same reaction.

Is there a slow release tablet anyone might recommend?

Many thanks,
Pam

[jlbattin]

Pam,

I used to have horrible leg cramps. I use Morton Epsom Lotion (http://www.mortonsalt.com/for-your-home ... om-lotion/) at night before I go to bed and rub it on my legs and feet, and I use a magnesium spray in the mornings and sometimes afternoon. I haven't had a leg cramp one since using them.

[tex]

Pam,

Many of us take chelated magnesium (magnesium glycinate). It does not cause D the way that other forms of oral magnesium supplements often do.

As Jari pointed out, the oils work fine, also, and so do Epsom salt foot soaks, or a little Epsom salt added to bath water. I'm guessing that the magnesium cream you used contained many other additives, and it was the additives that caused your problems. Products with long, suspicious looking ingredient lists should always be avoided, whether they are ingested, or applied to our skin.

Tex

[PamelaV]

Many thanks, Jari and Tex,
Am def. going to look more carefully at labels! Learning just how sensitive this LC can be. Heading back to the drugstore.
Pam