Just found this site

[seabare]

Hello all,

For some totally unknown reason, I actually felt human yesterday. The problem is I don't know why! Actually sleeping 8 hours instead of 3 ish may have something to do with it. I was able to attend a whole day college class and actually pay attention.

Today, not so good.

Still need to hear from dr. for appt. Will rattle his chain today.

Several meds. questions:

I have some Prednisone left over from a previous issue. I was wondering if, in addition to the hyoscyamine (for IBS) which I'm still taking, but not sure now why, but am afraid to stop, Pepto and pain meds if I need them, if starting a small dose of Pred. would help. The D is almost under control (also have imodium), but the constant gurgling and fatigue are still there.

I'm trying to find work and not feeling up to even mediocre is making it hard. What do you think?

Also, years ago when I was on Asacol, my med records indicated at one time that I said it stopped working. Have others on the Asacol as maintenance experienced this? If so, what did the dr. do?


How old is Entorcort? I'm wondering if my old drs. in 1994 either didn't know about it or if it is newer than that. Do you think I could ask the dr. for a scrip for it before the colonoscopy? Scheduling that can take weeks here and weeks more of this sounds pretty depressing.

Another and hopefully last question for this time. I have many other symptoms. I've been reading this site and much more. Does having increasing symptoms over time sound familiar? In 1994, it was just D. Then the gurgling, rumbling stuff so you can't sleep. Always the extreme fatigue. Then the pain that doubles you over. Most recently the total fatigue and the nausea is new. It seems that I'm getting worse over time.

It is now more clear to me that I've most likely been mis diagnosed all this time, but has anyone else had a history that sounds like mine? I also have increased deadly migraines, joint pain, easy bruising, and itchy rash on my back, and my arthritis is worse.

I'm trying to figure out if all of this ties to MC and/or gluten. I think that's what I'm seeing in my reading, but not sure.

Any ideas/comments/suggestions would be greatly appreciated. I've started trying to avoid the gluten, but boy is that a lot of work. Will try Dee's bread tonight.

Thanks all. I love everyone's quotes at the bottom of their posts. I just haven't found "mine" yet.

Robin

[Rosie]

Robin, all of the symptoms you have mentioned, the fatigue, gurgling, nausea, joint pain, bruising, etc. are "classic" MC. You've been sick for a long time and just getting worse because you haven't addressed the root problem of gluten and perhaps other food intolerances. If you can go completely gluten free you should see improvement, but you may need the help of something like Entocort along with the gluten free diet to get control of your symptoms more quickly. However, I would caution you about self-medicating with left-over drugs, especially since you are already taking lots of medications.

I'm sure others with more experience will be along soon with their insights. But I just want to encourage you that you will be able to get control of your problems with the help of the accumulated wisdom on this site.

Rosie

[tex]

Hi Robin,

I totally agree with Rosie - the longer one remains untreated, the more symptoms will develop, (and the more likely that other autoimmune diseases), will develop. Yep, I had all those symptoms, too, and I still have a couple of crooked fingers to show proof of the arthritis. Today, I am arthritis-free, (by diet alone). A recent rheumatoid factor test was negative.

As she mentioned, self-medicating with the corticosteroids, could be a very risky situation. Prednisone in particular, has to be initiated at an effective dose, and then slowly tapered, in order to allow the body to properly regain control over the adrenals, etc.

I believe that Entocort, (budesonide), was approved by the FDA since 1994, but after a few years it was withdrawn from the market for a couple of years, and then the FDA once again allowed it to be sold, after re-evaluating the evidence. Any GI doc who treats any Crohn's or ulcerative colitis patients would surely have to be familiar with it, unless he or she lives in a bubble.

Tex

[harma]

thank you Rosie for your last message here. I hadn't make the link between gluten/MC and the easy bruising. I am familiar with it. Quite often I have bruises on legs, arms and no idea how I got them. Also with mosquito bites and the scratching afterwards, one big blue spot and I always had no idea why. So that is also MC (or gluten sensitivity in general).

[Syl]

Hi Robin, I was diagnosed with MC about three years ago, and at the time, only used Pepto Bismol to gain control. I had been on a gluten-free diet for about five years, gone off it, then run into trouble. Once I had control and no problems, I slowly went away from the gluten-free way of life. Yes, it is a pain of a diet, many would agree. Forty days ago, out of the blue, the explosive D started up along with dull aching around the tailbone. I credited that part to sitting on a bad chair at work and leaning into the computer. Anyway, the D got so bad, I found my way back to this website and these nice helpful people and was reminded that the gluten-free diet is necessary. Don't know why I thought I could get along without it. I was heavy into gluten (pasta every day!) and then the bottom fell out. After a colonoscopy and the familiar message "you have lymphocetic colitis" I was prescribed Asacol. Doc said you'll be taking this about one year. ?? Still, I resisted taking it as I had heard it didn't work for many people with this, but everybody's different. Thought with time this would again....just go away. Now as I approached 40 days of getting weaker and eliminating everything but chicken, rice, jello, and not much else, I opened my sample bottle of Asacol a few days ago and tried it. Something is working.....BM's are down to two or three a day; still mushy, but fewer. I can feel the difference...my gut has quieted down; I think it's working but it's still very early. I finally took my aching tailbone to a chiropractor today...first time for me. She said if things were out of whack on the lower end of the spine, nerves can radiate into the colon area and cause spasms, etc. I figure, why not give it a try, while staying on the very limited diet and Asacol. BTW, gluten free mostly affected my participation/fun at pot luck doings and eating out. You get to be a food detective. Also, there is rice pasta. Unfortunately, I ran out and bought a lot of gluten free flour, pasta, mixes, etc and then discovered most of them contain soy. I am holding off using them until things settle down. I plan to add foods back in very slowly, and one at a time. Hope you find answers that help, Sylvia

[Rosie]

Harma, what you say sounds so familiar!! I too used to get a bruise scratching an itchy mosquito bite, and just a tiny bump that I didn't even notice at the time would give me a big bruise too. I think that Tex, or someone else on the Forum explained that easy bruising was a classic symptom of vitamin deficiency, like B12 or C, very common with the malabsorbtion problems associated with MC. Since I went gluten free and upped my intake of Vit B12 the easy bruising has almost gone away. For example, I just now took a look at my legs, and I don't have any bruises at the moment. Before I went GF I would probably have at least 4 or 5 large bruises on my legs in various colors of healing. I think that I still bruise more easily than I would like, but it's gotten much better!

Rosie

[teagirl]

I also have increased deadly migraines, joint pain, easy bruising, and itchy rash on my back, and my arthritis is worse.

Hi Robin,
I've had hideous migraines for years and lived on triptan drugs, but since I found this family and learned to cut out gluten, the reduction in migraines is nothing short of amazing. They came several times a month, but since my dx last summer, I have had only 2, both when the barometer went totally rang-y.

Re the rash, I've had that too on my backside, thighs, and arms near the elbows. My GI says it is 'dermatitis herpetiformis' which is associated with gluten intolerance. I haven't had it since last year .. since I gave up gluten.

Misdiagnosis goes with the territory, I'm sorry to say. I had stomach/bowel problems for more than 10 years and was told it's acid or it's food poisoning. I've been given enough Imodium/Pepto to stop up the Ganges River; my PCP gave me Prevacid for GERD; the rash was treated as shingles; the frequent bruises were looked on suspiciously and I was asked if everything was all right at home; it went on and on with me slowly getting worse and worse and cutting more and more things out of my diet, yet having more and more D episodes. Eating out was a nightmare. Even eating in caused a few problems. A hugely stressful time last year (family illness and death) was the trigger to push me from what I'm now pretty sure was gluten sensitivity, into full blown gluten intolerance (I have LC). It's true that good things can come out of bad things - I found out what's wrong with me!

My story about being dx'd is elsewhere on the forum, but suffice it to say that my current status of being 90% ok is due to the folks here, not to the medical profession.

[Gabes-Apg]

i used to get mirgraines 2 - 3 times a month! and have to take time off work.

I haven't had any since diagnosis and adopting strict gluten free/yeast free/lactose free diet and my digestion being a happy chappy....