Collagenous Colitis Microscopic Colitis

Hello I am new to this board & I am very ill, I was diagnosed with collagenous colitis approx 5 years ago and at that stage I was treated with 30mg of prednisone a day as my colitis was severe ( up to 20 bowel movements a day ), I stayed on prednisone for 2 1/2 years and continued to have bouts of severe colitis.

 

My specialist had taken me off prednisone as you can imagine I was now having bad side affects from the prednisone & she put me on entocort this was so much better & even though I had bouts of colitis whilst on the entocort I was much better.

 

10 months ago my husband lost his job & his medical coverage and since then I have had no drugs for my illness and have been on a slow decline ever since then. I cannot keep food in for more than 4 hours and have lost over 30 pounds of weight, most days I can barely function & as I write this I am so run down I have the classic ulcers on my tongue from my colitis and spend most of my day in the bathroom doubled over ( at work too ) .

 

When I was intially diagnosed it took a long time for the doctors to get me on a protocol of medicine & I was so sick that even low dose chemo was discussed with me as surgery was not an option as my disease is right through my colon from the very top to the very bottom.

 

I do not understand why this particular colitis is down played so much, I am in pain can barely function and feel this illness will slowly kill me, I am not entitled to medicaid and I cannot afford cobra, I need to speak with people who have this disease, on this board I cannot find collagenous colitis but there must be others out there. 

 

 

 

 

 

 

 

Hi..welcome to the forum!

We have discussed microscopic colitis here on occasion....there have been a few who have had it, but members come and go, so I can't remember who or what meds were given.

There was one member recently who was diagnosed with collagenous sprue...but I believe that's small intestine, not colitis...don't remember whether he/she had UC as well.

Have you done a lot of research on the internet about it?

What I do think you could at least do for yourself at this time is to use either pepto bismol or other bis-muth preparations (had to add the hyphen since s-m-u-t is an asterisked word) ....considering your insurance situation.

What I don't understand is why your doc kept you on steroids for so long. It didn't seem that there was much improvement regardless.

I don't know the extent that collagenous colitis suffers would have, but is yours throughout your entire colon?

There are also 5ASA preparations that you could consider to use...I believe that there are links in one of the sticky posts at the top where you can apply for free medications.

Do you have any other health problems happening? I know that with any autoimmune disease, stress levels will exacerbate symptoms.

Have you made any changes to your diet seeing if there is any improvement?

Hope you're able to get some relief....regarding information....seems like most of us with any disease, there's never enough info. We do rely on doctors to give us the proper diagnosis and the reality is that we have to be proactive in seeking out information. At least today with the internet, it's at our disposal day or night.
At the very least, it can arm us with questions in order to get more answers.

quincy

Firstly Thank you so much for replying to me I so appreciate this you have no idea how good it is to speak to others about what i am dealing with.

I was on the prednisone for so long for two main reasons, firstly my specialist was in a different state so I did not see her all the time & secondly I started on a lower dose and remained ill so over a period of time the dose was raised again and again, my specialists told me my illness was severe and that my options for treatment were limited, she knew I had been on prednisone far to long and I was taken off eventually as the prednisone did not work well & the side affects were awfull.

She wanted to try me on a new drug and desperately tried to organize something and if I had been able to take it my case was going to be written about but my insurance company denied the drug to me, in the meantime I had been weaned off prednisone & was on entocort.

As to other illness my doctor thought I had a high chance of lupus when my ANA was tested it was boarderline HOWEVER at the time the blood was drawn I was on prednisone, apparently prednisone will mess with bloodwork but she said to show boarderline ana levels on prednisone was an indication there was an issue.

Of course my ana was never retested as I remained on entocort ( cortisone steroid ) so the ana testing would always be jaded. As to other health issues YES I have been ill since a young woman, my bowels have never been good especially just before a period and things started to go downhill a year after the birth of my 4th child at age 27, first strange symptom was severe hair loss.

I will skip all the story by rounding off what was found after 11 years of misery and moving to America, a doctor who took notice FINALLY, I ended up in the OR after a cat scan showed large growths in my abdomen, I had poly cystic ovarian disease,endometriosis phase4 and adenomyosis, needless to say I had a radical hysterectomy, the surgeon stated my disease was extensive and was also present on my stomach/bowel/bladder lining they scraped as much as they could off, I believe I also had colitis at this time but it went undiagnosed I also believe I had an autoimmune illness at the time also undiagnosed, if my ana was tested now I would get a correct reading but I cannot afford the bloodwork.

I have thyroid growths ( very common but each time I had a thyroid scan I had grown more )I was told ( by the same hospital that finally treated my colitis ) that I was a mysterious patient with unusual symptoms ( he knew about all my med history ) and my thyroid doc told me they would consider doing gene research on me to find out what I have, but I moved 2 thousand miles away so this never happened.

As you can see I have already run the gammet !!!!! I have had 3 colonoscopies with biopsy & yes my disease is stop to bottom, I have had the gene marker testing for crones and celiac etc all negative, I have had the virtual endoscopy and cat scans of the abdomen and brain ( brain scan showed lots of scattered white spots on brain matter, was told not to worry about that )I have tried peptobi****h/diet and no change I feel like I am losing this very long battle that has lasted years and more so now than ever before, I just need mental support as much as medical drugs as my will to go on is not good right now.

http://www.perskyfarms.com/phpBB2/index.php


is the forum link.



q

We have found that almost all of us have Non Celiac Gluten Sensitivity. Eliminating gluten helps with other autoimmune diseases as well.

I believe that UC and Crohn's patients may be helped by going gluten free, also.

We suggest that people who can afford it, get tested by www.Enterolab.com If one cannot afford it, then an elimination diet can work as well. A lot of us are also intolerant of casein (the protein in dairy), and about half of us are intolerant of soy(a). I hate that one the most.

Entocort is the favored drug but I have chosen to go the no drug route like our administrator and our pediatrician/MC patient and others. It is so much slower but it can be done.

 

Hi again I enjoyed reading your replies and informative links and information, I wanted to tell you all I am a New Zealand gal living in the USA I have a Scottish mother & have the right of abode to live back in the UK, I have free medical drugs at my feet but cannot access them as I cannot afford to move across town letalone to another country, this frustrates me no end as you can well imagine

As I stated in a previous post my specialist told me I could not be operated on as my disease is right through the small bowel and all the way through the large bowel, this is when we talked about low dose chemo to shut down my immune system and reboot it, she told me all the ups and downs of going on low dose chemo and in the end I decided to refuse this treatment, I now wonder if I should have done it.

LOTL, I got to this forum because of a Google alert for MC and joined this group to tell you about our MC forum. I do hope you'll come over and join the best support and information site for MC.

There is better information than is at all the big medical centers such as Mayo, Cleveland Clinic, and the like.

I've been a member for over a year and a half. I am teaching my GI what I have learned from the PP. Most docs think diet has nothing to do with MC and poo poo it (pun intended) but we KNOW otherwise. Thank heavens, my GI listens and doesn't roll her eyes like most docs.

We don't have anyone from NZ but do have 3 Aussies, a gentleman from Hong Kong and a lass from Scotland.

Other people on the MC BBS have had that same problem and wear Depends to bed.

 

PLEASE give going GF (gluten free) a try. I am pretty certain it would help you. It helped me very quickly but I had been dairy free for decades so I didn't need to worry about that.........

 

If you don't want to join (I can't imagine why) just lurk for a while.

 

No questions are off limit.

Please be careful of dehydration. Polly, our pediatrician/member, has a recipe for a drink to restore electrolytes.

Also, just eat bland non-fiberous food while your gut is so inflamed.

@jestjoan Thank you for the link on dehydration I have quite a few of those symptoms I am paying attention & will make the drink to replenish what I am losing I don't want renal or heart failure for sure, please do not think I am not taking this seriously I have find it hard to think and concentrate and everything takes quite an effort for me to do or remember I do truely appreciate the support.

LOTL, how are you? Scary not hearing anything more from you.

You won't believe it, a person from NZ signed on to the PP forum!

Hi

I have just been diagnosed with microscopic colitis and have been put on Endocort.  It seems to have slowed things down, (from going to the bathroom 30 times a day to 14) hopefully the longer I'm on the meds. the better it will get.  This is a horrible disease, completely debilitating.  I've gone from being an active member of my community to being housebound.  At night I've had to wear tena underwear (my new langerie) due to complete fecal incontinence when sleeping.

I pray that you find some help.  I don't know the American health system (I'm Canadian), but isn't there somewhere you can go for help?