back on here with bad news.....need help or advice

[armstrongpilot]

hello all,

due to me being on budesonide for a year my dr said I had to stop. that was three weeks ago; ever since then I have been in bathroom non stop day and now waking up at night to go as well. I started seeing a nurse practicioner that is also a master nutritionist. She ran an ALCAT (tested 238 foods) test on me and most foods showed fine, then they ran a stool test and again foods where fine. I did have a bad yeast infection (probably due to eating nothing but rice and hamburger meat for almost 2 years). I had to go on FMLA at work and dr says I need to go on at least short term disability. No more flying jets for me...hardest decision I've ever had to make. I have started to eat more foods, trying to get better nutrition and more calories in. I am feeling lost....eating nothing caused D and now eating carefully, but lots of food is causing non stop burning d. I am feeling very lost with this right now. I haven't tried the chloyestramine powder yet. Immodium doesn't seem to make a difference other then making cramps worse? I started this journey 1.5 years ago at 165lbs, now im at 127lbs and im afraid it will keep going down?

sorry to be a spot of bad news...but I need some advice. my doctor (UAB gastro) wants to do immune sepressants or colectomy. nuts to both of those.

[Lilja]

Hello Armstrongpilot,

I'm so sorry to hear that you are still struggling, I have followed your questions and problems and have been thinking of you. The prospect of being put on disability, must be devastating for a relatively young pilot. But, your profession has more strict guidelines as to security than most other professions, so it is understandable and it should be that way.

I'm not as experienced in this area as Tex and Gabes, who I'm sure will give you more potent advice than me, will comment on your problem, but have you tried the diet suggestions that are proposed to our members? Avoiding gluten, dairy, soy and maybe also eggs? Do you supplement with magnesium (maybe tried the ReMag which is more absorbable than tablets?), make sure that you have enough vitamin D3, and have you tried a bland diet (well cooked meat and vegetables, no raw fruit or vegetables, cook bone broth) and so forth.

Maybe cholestyramine will help you, and as I have understood some of our board members have had good results with cholestyramine.

I hope you will get a lot of help from our other members, and that this will result in a brighter future than it may seem right now.

And, as always when I get emotional, my English gets real bad. I apologize for that

Lilja

[armstrongpilot]

For the past year ive only eatin rice and hamburger....nothing else. Ive been super strict on my diet.

[brandy]

Hi Armstrong,

I am so sorry for what you are going through.

I am on of the one's who has had good results with cholestyramine. I also found immodium did nothing. I was on budesonide years ago but had a lot of side effects so it is not an option for me.

My primary care physician prescribed it for me with no hesitation.

When I talked to my PCP I said, "Mr. PCP I've been in a MC flare for about 4 months that I'm not kicking out of. What are your thoughts on bile acid sequestrants? He said, yup, they will bind you up. He could not remember the name of the one he usually prescribes. I said cholestyramine? He said yup, that is the one he prescribes a lot of."

There are several in the class of bile acid sequestrants but I think MCers seem to be having good results with the cholestyramine one.

He prescribed 2 packs per day. I started with 1/2 pack per day to try it out.

I probably could go with out it but I'm in the middle of some stressful family situations so I am taking an extremely small dose of the cholestyamine. It is making the difference between no quality of life and quality of life.

my doctor (UAB gastro) wants to do immune sepressants or colectomy. nuts to both of those.

Agree on the immune suppressants. You are a young guy. Not worth the side effects of cancer/death. It is shocking how the immune suppressants
are advertised on tv like candy.

Another med you might want to try down the road is the LDN. It is considered more experimental. There is a thread about it at the top of our forum.

Is there a reason doc wanted you off of budesonide? If it was working? I'm assuming you were on a low dose at this point. Mayo Clinic is ok with long term low dose of budesonide.

Again, I'm sorry for what you are going through.

[armstrongpilot]

He said i was on it to long. It only worked marginally for me....if i ate rice and hamburger i was constipated...anything else and it was d again. He told me that budesonide wasnt going to help with food sensitive enteropathy (basically intolerences). He said i can go back on it if i get desperate......and cholystramine doesnt work.

[Gabes-Apg]

Sorry to hear of these issues...
due to my combo of health issues I too have had to make career changes, move locations etc and understand the frustration, disappointment, unsettlement etc that comes with these events.

in amongst the tests that were done by Nurse/Nutritionist, did they check your Vit D3 levels? Magnesium level?

I also recall a discussion with you a couple of months back about medication for anxiety/depression? what medications are you currently taking?
and that you were having Rice Chex etc?

although your rice and hamburger eating plan was plain, it may not have been the best option for you.
and you were not getting enough animal protein and amino acids.
did you ever try lamb, turkey, and other meats that are well tolerated by MC'ers?

There are some members here that did get good support from the immune suppressants, albeit, they still had to stick to an eating plan void of major triggers.

check out our guidelines for healing where we have suggestions for the eating plan if you want to rethink option for bland low inflammation meals.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328

[tex]

In addition to what Lilja, Brandy, and Gabes have posted, I'm wondering about the rice. Unless the stool test that your nurse practitioner gave you was an EnteroLab test, the results of the test you had are probably worthless for MC patients. If you are serious about finding a diet that will work, the test panel known as C1 (at EnteroLab) would probably be very helpful. That test panel includes tests for beef, pork, chicken, tuna, almond, walnut, cashew, oats, corn, rice, and white potato.

And I can tell you from personal experience (I have had a colectomy for over 6 years now) that a colectomy will not resolve your food sensitivity symptoms. Only the proper diet can do that.

The article at the following link (published in GUT medical journal in 2014) shows that your doctor hasn't been keeping up with research about the long-term use of budesonide. Note the sentence from the conclusions in the abstract that I have highlighted in red.

Conclusions Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.

Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial

It's difficult to say whether printing the full article and giving it to your doctor will help or not. Some are open-minded and some are pretty hard-headed/slow learners.

Incidentally, there's no need to apologize about being bad news — we're all accustomed to being bad news ourselves, whenever our luck turns sour.

I hope that some of this is helpful.

Tex

Tex

[brandy]

No worries about budesonide. Honestly it wasn't "all that" for me. I just was curious.

Do you have another doc you can talk to about the cholestyramine? Like a PCP? Or if we found some studies listing cholestyramine as a course of action for MC that you could take into existing doc would that help?

It is serious when you lose your livelilhood and job that you are passionate about. I'm very sorry about this.

We have had several MCers take the immune suppressants but I believe they were older. I believe they are riskier for younger folks to take.

[Erica P-G]

Armstrong I would really like to suggest the cholestyramine powder with SUCROSE - this is important you don't want the Nutrasweet version....I have been putting it in 4 oz Sodelicious Coconut/Almond milk and it stirs up nice drinks just fine and I am seeing the results I didn't think were possible. If nothing else I'd give it a try because it is sounding like bile enzyme is finding its way to the Large intestine and there fore creating the Big D that I am now not having at all. Once I got my food under control, healed for a while, it took plateauing to realize I needed to give the Cholestyramine a try...glad I did.

Good luck
Hugs
Erica

[tex]

This is one of the articles that Brandy referred to:

Bile acid malabsorption has been shown to coexist in 60% of patients with LC and in 44% of patients with CC [Ung et al. 2000; Fernandez-Banares et al. 2001]. It remains to be determined whether bile acid malabsorption is causative or secondary.

New insights and challenges in microscopic colitis

These are the 2 articles referenced by the above article:

Role of bile acids and bile acid binding agents in patients with collagenous colitis

Bile acid malabsorption in microscopic colitis and in previously unexplained functional chronic diarrhea.

Tex

[armstrongpilot]

Everyone here is so wonderful....i read on here daily. I didnt think i would ever get to this point. My amazing employer is going to hold my job for a few months to see if i can return. Dream isnt dead yet... tex - the test i took was called ALCAT...it teated 238 foods for intolerences. It is by cell science systems. Any insight on that one?

[Gabes-Apg]

This discussion will maybe help answer your question about reliability of ALCAT testing results...
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21227

and a search using the word Alcat came up with these discussions
http://www.perskyfarms.com/phpBB2/viewt ... ight=alcat

hope this helps.

[Gabes-Apg]

now that I am more alert and thinking better....

I remembered this conversation with you from May this year
http://www.perskyfarms.com/phpBB2/viewt ... ht=#179446

in line with possibility of excess heavy metals in your system this article has correlation as to the root cause of your issues/intolerances
http://www.perskyfarms.com/phpBB2/viewt ... ght=theory

the reason I mention these discussions is that if you have excess toxins/metals having the cholestryamine may well help you more than you think, as it is one of the protocols for clearing toxins etc..

as per this article
http://www.perskyfarms.com/phpBB2/viewt ... ther+toxin

[tex]

Thanks Gabes,

Yes, based on the second link that Gabes posted in her next-to-last post, I don't have much faith in the ALCAT tests. They appear to be pretty much unreliable. I'm referring to my post in the thread at this link:

Tex, is Alcat testing a good idea?

Tex