New member questions

[pies]

Hello,
I am new to this board and relatively new to collagenous colitis (Dec 2010). I have been on a roller coaster since diagnosed. I realize many of you have spent years battling this condition-I appreciate your listening to this tale.

I had viral gastroenteritis in Oct 2010, which started this odyssey. In addition, I was a heavy ibuprofen user because of frequent headaches, migraines, and sinusitis, which most likely contributed to the problem. I also have asthma and allergies. For full disclosure, I also was quite into wine and had a couple glasses with dinner 3-4 nights/week. I know my lifestyle and choices contributed to my condition. I now drink rarely because I know it aggravates my condition.

After being diagnosed, I was put on Entocort for 3 months (9 mg x 1 mth; 6 mg x 1 mth; 3 mg x 1 mth). A week after I stopped, the diarrhea was back. I went back on Entocort for another month; came off and 1 week later D started. To be honest, I was still using ibuprofen during this time b/c I didn't realize it was a trigger, so it's possible I would have been fine had I stopped that. Finally, in Apr 2011, I saw a nutritionist and had ALCAT food sensitivity testing done. Severely intolerant to dairy (which I had stopped eating 2 years prior), moderate to gluten (I am now completely GF), and host of other things. Followed the strict rotation diet for 2 months, which helped tremendously with the sinusitis, headaches, migraines, and possibly the CC, although I was still on Entocort, so not sure. In Aug 2011, stopped all meds and had 3 wonderful months of normal BM, but went to a social function in Nov 2011 and had 3 drinks and the D cycle started again.

I found Dr. Fine's article on pepto-bismol therapy, followed that for 8 weeks, and had 1 month of normal BM in Jan. Went to Puerto Rico in Feb 2012, had a fruity drink on the beach and D started next day. Did the 2-week rechallenge of pepto-bismol to no avail. Finally, I caved in and started on Asacol 2x400mg twice a day. I have been on this a week and have seen no improvement, in fact, it seems worse. I have moderate cramping, lots of bubbling in my intestine, slight headache, and 4-7 liquid BM/day.

My questions to you:
1) How long does it take for Asacol to work? Am I expecting too much to see a difference after 1 week?
2) Since I was a heavy ibuprofen user, and Asacol is a salicylate derivative, could Asacol actually be making things worse?
3) Has anyone tried Dr. Dalhman's protocol?
4) Does anyone find that probiotics seem to give them D?
5) MRT testing sounds a lot like ALCAT food sensitivity testing? Has anyone had both, and if so, did they yield the same results?

Any advice you can give me based on your experience with CC would be so appreciated. I feel desperate for solutions, and some days, hopeless that this will ever resolve. Some of you have been dealing with this for so long, I don't know how you keep your spirits up.
Thank you,
Cindy

[tex]

Hi Cindy,

Welcome to the board. First off, your experience with treatment is typical of what most of us under a GI doc's care have experienced - they don't actually know how to treat this disease, and every time they persuade you to stop the Entocort, the D will almost always return, because something in your diet is continuing to generate inflammation, and doctors don't understand that - most of them think that diet has nothing to do with MC. To control MC, requires either permanently changing the diet, or taking a medication continuously, probably forever, or both.

1) How long does it take for Asacol to work? Am I expecting too much to see a difference after 1 week?

Usually several weeks or more. However, if you are sensitive to NSAIDs, (and many of us are - they will trigger MC flares), then you will almost certainly react the same way to mesalamine, (Asacol), because mesalamine is a derivative of salicyclic acid, and in individuals who are sensitive to NSAIDs, mesalamine will trigger the production of inflammatory leukotrienes, just like NSAIDs.

2) Since I was a heavy ibuprofen user, and Asacol is a salicylate derivative, could Asacol actually be making things worse?

Yes, as explained above. Don't expect your doctor to understand, though he or she might.

3) Has anyone tried Dr. Dalhman's protocol?

Yes, a couple have, without success - just more wasted money.

4) Does anyone find that probiotics seem to give them D?

Yes, many of us. Probiotics work for a few, though, just not everyone.

5) MRT testing sounds a lot like ALCAT food sensitivity testing? Has anyone had both, and if so, did they yield the same results?

I'm not familiar with the ALCAT program. They may be similar, but they almost surely give somewhat different results.

Remember that most of us here are in remission, but most people stop posting, after they reach remission, so when you read the posts, it appears that almost everyone is in a flare - that's not actually true, of course, though anyone can relapse at any time, if they slip up on their treatment.

Based on your description of your relapse triggers, it appears that leaky gut is your primary issue, (though mast cells are probably also involved). You are correct that alcohol is the number one cause of increased intestinal permeability. However, please be aware that many medications also cause leaky gut, and NSAIDs and melalamine are prime examples. SSRIs, SNRIs, PPIs, statins, bisphosphonates, etc., also can trigger MC by causing a leaky gut. Gluten, casein, soy, and other foods also cause leaky gut. If you can successfully control your leaky gut, you can control your MC symptoms.

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

Tex

[MBombardier]

Cindy!

Welcome to the fam. I was dx with CC in Sept. 2010. I am in remission. What remission means to me is that if I don't eat anything I shouldn't, life is normal. If I eat something I shouldn't, which for me right now means dried fruit (high histamine), then I have trouble because my leaky gut is not yet healed.

I have a little asthma (exercise- or cold-induced), allergies, migraines, etc. I took a lot of ibuprofen and had prescription Aleve for osteoarthritis before dx. The migraines have gone away with my diet except for an occasional hormone one. Tylenol is a safe pain-reliever, but it seems to work better if you take it at the first signal of impending pain, otherwise it's too late. I also have Vicodin, and will take 1/2 pill. It works fairly well.

Most of us can drink white wine. The red wine is high in histamine, or sulfates, or something that many of us react to. I think vodka and other hard liquor is also okay. Beer is not, unless it is gluten-free beer. I suspect that whatever in the alcoholic drink that triggers you is not necessarily related to the alcohol and you may find something that you can drink without upsetting the apple cart.

Welcome again!

[pies]

Thank you, Marliss. I am going to order the MRT test to see if that shows different intolerant foods than the ALCAT test did. This is all such trial and error to figure out what works, and it is only in hindsight that I realize what some of my triggers were.

Has anyone tried going on a long-term (3-5 day) liquid fast to try to calm the intestines to reset them? I was also looking at helminthic therapy, but I couldn't find anything to support it's success in CC. Plus the thought of ingesting pig whipworms is disgusting. This is all desperation talking.

Again, thank you for replying.

[pies]

Hello,

Has anyone tried and had success with AloeElite? I know we are all different and respond differently to things (eg, probiotics don't seem to work for me), but was wondering if anyone has tried this. It is pretty expensive. Naturally, the testimonials on the website were glowing, but I'd like to hear from this board before I go chasing another miracle.

Thank you,
Cindy

[mturn2]

Hi Cindy. I was also diagnosed at the same time as you and oddly enough, had gastritis in Nov. 2010 probably from taking Augmentin XR for chronic sinusitis. I have allergies and asthma as well. I started out with "d" with the gastritis but it seemed to improve but then it seemed to turn into "c" dominated LC with severe gas. I tried GF for 6 weeks and gave up because I didn't see much in the results dept. and couldn't justify the cost. By last summer I seemed to be a little better (still gassy)
but blew it with thinking I was cured and starting eating anything I wanted which put me right back in the state I am in now- still trying to manage constipation and horrible rumbling and gas. I have once again given in to the GF lifestyle and have gotten the nausea to subside and have been living on rice, chicken, eggs, and potatoes for the last 3 weeks. Still have gas but it seems to not be as bad as it was when I was eating whatever I wanted. I haven't tried either of the programs you mentioned because it seems many on the internet try and "prey" on people that are sick and from being a constant "lurker" on this board, I doubt that they work since I don't remember seeing anyone talking about them on the board. I could be wrong though. Just wanted to say hello and welcome and the coconut mock soy sauce can be purchased at Whole Foods for a little over 5.00 if it is the same thing you purchased. It is actually quite tasty when added to rice.

Hope you feel better soon.
Sondra