topic Re: Micro Colitis in Wellness

Micro Colitis

highmaintenancejan — Wed, 16 Apr 2025 21:53:22 GMT

I'm so tired of having it. I've had it 7 years and nothing has gotten rid of it. Anyone else?
It keeps me worn out. You have 3 to 10 "Bm's" a day. I've been on pesto bismol and oral budesonide.

Re: Micro Colitis

highmaintenancejan — Wed, 16 Apr 2025 21:54:20 GMT

PeptoBismol

Re: Micro Colitis

kismet — Wed, 16 Apr 2025 22:05:57 GMT

I take Florastor twice a day and use Imodium when needed. Have this problem after major surgery. Certain foods will make it worse. It's different for everyone but keep a diary to see if there are. Welcome to the "I know where every restroom is in every store". Mine has gotten better as I've aged. I don't know what state you live in but some you can get some type of paper and any store has to let you use the restroom even if they normally don't. Have you seen a specialist?

Re: Micro Colitis

granddi — Wed, 16 Apr 2025 22:18:50 GMT

@highmaintenancejan wrote:
PeptoBismol

Pepto has side effects. One that alarmed me was hearing loss.

Re: Micro Colitis

highmaintenancejan — Wed, 16 Apr 2025 22:26:32 GMT

@kismet YES, I've been seeing a Gastrointestinal doctor for years. @granddi, no wonder I'm losing my hearing. I'm 79.

Re: Micro Colitis

granddi — Wed, 16 Apr 2025 22:58:23 GMT

@highmaintenancejan I don't know any answers. I had food poisoning 3 years ago. Most people get better but I did not. My diagnosis is IBS-D. It's just a diagnosis that means "we really don't know why you are sick and we don't really know what will help you."

I have seen 3 GI docs, 3 Primary Care. I have tried everything and I mean everything. I have had poop tests. colonoscopy and all kinds of blood work. I have literally 40-50 types of magic supplements including hand fulls of probiotics. I have taken Xifaxin the $1000.00 gut antibiotic. I have done all the food things: caffiene, fermented foods, dairy, food elimination. Like you, pepto, and imodium. I rejected the bile sequestriant bc warning for patients over age 50!

I've has SIBO breath tests, Gluten sensitivity and

Also add meditation and cognitative behavioral therapy to the list.

I have searched for the possible fecal transplant but no success.

I am willing to private pay outside the "guidelines" approved by insurance.

I also understand that IBS-D is not micro colitis. After 3 years of multiple watery poops per day and at least 6 different docs, I thought about what else I could do. First thing I did was stop ALL probiotics. Within 2 days I had normal poop for the first time in 3 years. I have been great for the last 3 months. Will it last? I don't know.

It's just one person's story.

Re: Micro Colitis

highmaintenancejan — Wed, 16 Apr 2025 23:32:38 GMT

@granddi, I've done almost all of that. I would love to have a normal formed stool. Not in 7 years. Micro Colitis is an auto immune disease. Of which, I have many. I just want a miracle cure. It is exhausting.

Re: Micro Colitis

kismet — Thu, 17 Apr 2025 00:43:18 GMT

My problems came from having part of my small intestine out and a valve that is not working. I don't recycle my bile and it drops into my lower intestines. Had the surgery in 1970. This has been my life but at one time it was bad, had to quit my job. I did have C-Diff after having knee implants and had it for months. I was at the point of having a fecal transplant. I hadn't taken Imodium while on antibiotics. The doctor said to take the imodium while taking the antibiotic and that worked. Guess the antibiotic was going through me too fast to do any good. I take the Florastor because of it. Never want that again.

This takes over your life and people don't understand when you cancel something at the last minute. I say if they have what I have they would understand. Years ago my doctor gave me Colestid powder to take off label. It did work but I was getting a lot of joint pain and felt terrible. I just took several imodiums a day and if I had to go somewhere I didn't eat or ate a safe food. If you have a bad day eat some bananas. They always made me feel better, sometimes I would feel lightheaded. Stress has a lot to do with it also. I went for biofeedback and that helped. As I've aged it seems to get better. I think there are a lot of things that doctors don't know and we fall into that. I've been with the same specialist for over 35 years and he retired. Never will find another doctor like him.

Re: Micro Colitis

KathyM23 — Thu, 17 Apr 2025 01:02:16 GMT

@highmaintenancejan I have ulterative coitis and I take Mesalamine 4 tabs once a day forever. Maybe a different med for you? Have normal BM now. Before med, was constant. It's been 7 years for me also.

Re: Micro Colitis

AngelPuppy1 — Thu, 17 Apr 2025 09:38:20 GMT

@highmaintenancejan

Ihave never heard of this conditon but I certainly have sympathy and empathy for you! I wish I could tell you something to help you but I sadly do not know of anything. I kind of have the oppositie problem. IBS/Chronic Condition. Have undergone so many tests and taken so many things. I am now on a medication - horrendously expensive I might add - to make me go - and it is not a pleasant medication - I will just say that. So, as you wrote, it is difficult and I often feel like it just takes over my life! You would think that in this day and age they could come up with decent solutions! I truly hope that you can find something to help you. I wish you all the best.

Re: Micro Colitis

highmaintenancejan — Thu, 17 Apr 2025 13:48:11 GMT

@KathyM23, ulcerative Colitis is different. It requires different medications. But thanks. My girlfriend has that.

Re: Micro Colitis

highmaintenancejan — Thu, 17 Apr 2025 14:00:21 GMT

@AngelPuppy1, are you on any kind of pain medicine? They are very constipating. The only time I got relief from my problem was when I was in the hospital and they were giving me pain medicine. I wish I could live on it.

Re: Micro Colitis

AngelPuppy1 — Fri, 18 Apr 2025 09:29:33 GMT

@highmaintenancejan wrote:
@AngelPuppy1, are you on any kind of pain medicine? They are very constipating. The only time I got relief from my problem was when I was in the hospital and they were giving me pain medicine. I wish I could live on it.

@highmaintenancejan

No, I'm not. I am on a lot of medications but nothing for pain. I can't even take a tylenol or anything over the counter for pain because it makes the constipation worse! Who knows? I have had a dicey digestive system since I was a very young child.

Re: Micro Colitis

gr mt girl — Wed, 30 Apr 2025 19:53:22 GMT

One thing that you could try is called Banatrol. It's sold online (I bought it on A) and it is around $37.00. It is a medical grade powder that you use a spoonful of mixed into water or juice, and it helps to have a "formed" movement without constipation. I was in a FB group and someone recommended it, so I tried it. It was the only thing I had used that worked for me !

Re: Micro Colitis

highmaintenancejan — Thu, 01 May 2025 20:34:21 GMT

@ gr mt girl Thanks, I will check Into that product. Do you still take it?

Re: Micro Colitis

loveschocolate — Sat, 03 May 2025 14:07:08 GMT

@highmaintenancejan , I was diagnosed with microscopic colitis about 20 years ago. I had been on a whole bunch of medications that didn't help and the side effects from the medications made me feel even worse with nausea and vomiting. It's frustrating. I haven't taken any medications for years and just try to deal with it. I understand your exhaustion.

Re: Micro Colitis

tends2dogs — Sun, 04 May 2025 16:48:08 GMT

@highmaintenancejan My sister had this for years. She just went through cancer treatment for melanoma last year (cured, thank you, Lord), and she had it the whole time she was in treatment. She ran through all the tests. Finally her oncologist put her on a low dose steroid (prednisone) and a round of doxycycline. She said she is finally having formed stools. It was a day of celebration!

You might want to mention this to your doctor. It can't hurt and it may help.

Re: Micro Colitis

highmaintenancejan — Sun, 04 May 2025 18:15:36 GMT

@loveschocolate
That's what I intend to do also. I'm tired of being a lab rat when nothing works. DD wants me to go to a BIG medical center. I've been fooling with this for 8 years. I think I'll just deal with it. I'm 79....80 soon.