My Diagnosis for CC

[mini]

Just wanted to add this on top of my initial posting as a newbie to the site.

Yes WOW would be a word I could use for the hospital not telling me! I went in for a colonoscopy in Feb 2006 for my symptoms they found polyps which they believe was approx 5 years growth and they were removed (the polyps were in the sig region so a biopsy was also taken at the time of colonoscopy).

I had a review appointment with the GI in May 2006 to be told the polyps were fine but I would be re-screened again due to their presence and family history (my mother died from bowel cancer). My case was then discharged from the hospital and a report sent to my GP. When I saw the GP he just said everything was fine and I did not have bowel cancer and no action was taken.

I continued to be ill and made visits to my GP approx once a month telling him how ill I still was and nothing was done or no follow up. However, each day I had D sometimes 5-7 times but, I managed to continue with life as normal as I could. Around August 2007 things started to get far worst, the D increased to around 15 times a day and I was having accidents in my sleep, also during work. This whole situation caused me a great deal of upset and stress.

Not happy with the lack of treatment I informed the GP that I wanted this referred back to a GI at the hospital. I also logged a verbal complaint with the GP's practise manager as well. A few weeks later I saw a new GI who apologised on behalf of the hospital for the misrable two years I had suffered and was informed it was written in my notes in Feb 2006 that I had CC. I asked him why I was not informed or treated and he just said 'I do not know, someone has made a mistake by not informing you or discussing this situation with you, all I can do is apologise'.

Since having the DX I have come to realise how little is known about MC and wonder how many poor people who have been told (as I was) that they have IBS and nothing can be done for them. If only the medical profession would take us more seriously, listen and take the time to find out the real reason for our illness. I am not sure about in the US but I really got the feeling from my GP's that this was 'all in my mind'.

Thank you for listening I guess from the post I have read a lot of you have also had problems getting the DX.

[tex]

Hi Mini,

On the one hand, your experience follows the pattern that many of us have also gone through, in that it took a loooooooooong time before you got any relief from the medical profession. On the other hand, they could have responded quickly, with a treatment program, if they hadn't dropped the ball right from the start.

A similar "cavalier" attitude toward MC seems to exist here in the U S, among many doctors, (mostly those who don't understand the disease at all). Since it's not a fatal disease, some of us have actually heard doctors refer to it as "just a little diarrhea".

We know of several doctors who have MC themselves, (a couple of them are members of this board, though only one posts regularly), and none of them refers to it as "just a little diarrhea". In fact, they refer to it as a debilitating, life-altering disease, (which it is, of course), providing additional evidence that only those who actually have MC, truly understand it.

Sometimes I think it's a shame that all doctors can't experience the misery of MC for about a month or so before they receive their license to practice, (complete with the occasional "accidents" and all the other miserable trimmings). Their attitude toward the disease would be totally different, and most importantly, I'll guarantee that they would have a pretty good idea of the best ways to treat it, if they had to live with it for a while.

You are correct about the IBS situation. As we've talked about here before, the difference between a diagnosis of IBS or MC, often seems to depend on whether or not the GI doctor bothers to take any biopsy samples during a colonoscopy exam.

Your statement about your follow-up visit,

When I saw the GP he just said everything was fine and I did not have bowel cancer and no action was taken.

sort of describes what happened to me, also. My GI doc thought that my uncontrollable D was due to cancer, and when he couldn't find any, he told me that "everything" checks out just fine. Five years later, I had to have emergency abdominal surgery because of a blockage in my colon. After I recovered, I got suspicious, so I requested a copy of the GI's endoscopy report on that colonoscopy exam that was done five years before the surgery. Sure enough, he had written in his notes that there was a significant stenosis, (a narrowing, or stricture), in my colon, at that location, but he never bothered to tell me about it. Maybe he forgot, but I'll bet he just didn't think it was important for me to know about it.

Anyway, I agree with you that unless they do a colonoscopy, and take biopsy samples, some doctors just automatically assume that these symptoms are "all in our mind". I guess they think that we are imagining that we have uncontrollable D. LOL.

Thank you for posting those details. I think a lot of us have been down a similar path.

Tex

[Pat]

Mini,

As I said in the other thread I was not told that I had MC either. I was told I had IBS and I would have to just take immodium or lomotil and live with it. I did that for 7 years until my GI doc retired. I was so stupid. I have learned if you don't like the DX, go to another doc. Keep going until you find someone who will help you. I even had another GI doc who admitted I had MC but said there was nothing he could do but to have me take 10 immodium a day. I found the one I have now and he has been a little slow making me do more tests including the camera pill but now I am on Prednisone. He did have me do the Enterolab tests and I am gluten, soy, and casein intolerant. The other doc did the fructose intolerance test. My new doc said that after I get the MC under control I would possibly be able to add more foods in. Probably not the gluten though. Being gluten free is really not that difficult. I miss fruit the most. Hopefully that is the one I will be able to add back in.

Pat

[mini]

It is good to read of others stories however, sad that we have this condition and it has taken a long hard road to get a DX or treatment for so many of us.

You are right Tex so few people in the medical profession have any knowledge of MC. On Friday I had to visit the occupational health department due to my sickness from work. I went prepared with print outs from the internet in case they did not know of the condition, which I needed to hand over as they had never heard of MC!

I now realise that the best way we can get the correct treatment and understanding from our doctors, GI's etc is to fully educate ourselves where MC is concerned.

[tex]

I now realise that the best way we can get the correct treatment and understanding from our doctors, GI's etc is to fully educate ourselves where MC is concerned.

Truer words were never spoken. We have to rely on doctors for a correct diagnosis, meds, etc., but we also have to know enough about the disease to recognize whether they are on the right track, or going about it all wrong. IOW, we have to be "looking over their shoulder", sort of like a supervisor. LOL.

Tex

[thedell19]

For years I was told nothing was wrong and it was all in my head and to calm down. I started to get real sick my last year in college in 2004-2005 and my Gp said nothing was wrong. So I had constant D about 4 times a day. stomach pain, gas, cramps, etc and again DR says nothing wrong.

Finally I get the case referred to a GI in mid 2005. He does a scope and finds nothing but takes biopsies anyways... then biopsies come back and the GI says there is slight inflammation and that I had Ulcerative Colitis. He puts me on Asacol which makes me worse for about 3 months. Then try Colazal and enemas for about 2 months to no avail. Finally a month before my wedding I begged my GI to try entocort since it was my belief I had MC and not UC and Entocort is effective in those with MC. After about 3 weeks on the Entocort (the night before my wedding I started to feel great). Was on Entocort for 5 months and felt wonderful. Then got off moved to Arizona where I got a new GI who did another scope. He found nothing - no inflammation anywhere even none in the biopsies... My Gi now suspects that I have MC and the GI in MD didnt know what he was talking about.

Then I went Gluten and Dairy free in August of 2006 and have seen improvements every month.

If you do infact have MC I would say look into the Enterolab tests for gluten, dairy, yeast, eggs, intolerances.

[mini]

Just an update.

I saw my GP last week not sure if I wrote about the appointment, DOH do excuse me I am sure these steriods are making me forgetful.

I did question why I was ever told it was IBS in the beginning and he said it was another GP, he would always have said some form of Colitis. Also he told me that I should expect this DX to change possibly to another IBD! I now wonder has something else shown up on my recent test that I am not being told about again, it just seemed odd he should say that, Oh well time will tell.

Yesterday I had to go back for blood test and should have the result in approx a week, so will update you to see if another add on to this illness is now showing. On the positive side my 'moon face' from the preds has almost gone YIPEE, and the dark circles through lack of sleep while on that drug has started to fade.

[tex]

Mini,

Some doctors believe that MC is an early stage of Crohn's or ulcerative colitis, but to my knowledge, there is no credible evidence to substantiate that claim. If it were true, were are the cases? I have come across only one case in the literature, so far, and one case is certainly not a valid statistic, (in fact, it is probably the result of a mis-diagnosis).

It is possible to have both MC and another IBD simultaneously, since having MC does not make one immune from having any other diseases. However, the chances of that happening are approximately the same as anyone in the general public developing an IBD. It is very rare to have MC in the first place. It is astronomically rare to have MC plus another IBD, or MC that "changes" into another IBD. I certainly wouldn't worry about that "risk", if it exists at all.

However, it is very common for the various types of MC to be interchangeable. IOW, LC often changes into CC, and the reverse can happen. There are at least five or six types of microscopic colitis, but LC, CC, and MC, are the most common types. Technically, MC is the situation where a patient presents with a sufficiently high level of intraepithelial lymphocyte infusion that a diagnosis of lymphocytic colitis is justified, and in addition, collagen band thickening is sufficient to warrant a diagnosis of collagenous colitis, also, so they just call it MC. Many of us also use the term "MC" to cover both LC and CC, individually, so that can be kind of confusing at times, but all the forms of MC are still the same IBD, and the treatment is the same for all.

In general, whenever a diagnosis changes from one IBD to another, it is because the initial diagnosis was incorrect, except, of course, for the fact that MC often changes from LC to CC, and vice versa. MC does not typically change into Crohn's or UC. It's amazing how many doctors continue to be confused about MC.

It's good to hear that the side effects are diminishing.

Tex

[mini]

Hi Tex

Thanks for that information but, I shall try and do some more research in this area. While surfing the net this evening I found this link, which I am not sure if you know of but decided to post it for you anyway. It does make interesting reading.

http://www.tripdatabase.com/spider.html?itemid=286269

LOL the problem is I used to be a nurse and also studied psychology at university and I just have one of those minds that needs to try and solve puzzles.

[tex]

Hi Mini,

I tried to access that article from both this link and the one in your other post, (in the "Links" forum), but it takes me to the Trip database, not the article. Judging by the name you listed for it, I don't believe it has been posted before, but it's difficult to say, without seeing the article.

You're in good company. There are several nurses who are members, and one or two members with degrees in psychology. We also have a couple of doctors, and a couple of nurse practitioners in the membership. Most of them no longer post, however.

You're correct - it is very gratifying to find "new" information on this disease, especially when so many of the doctors know so little about it.

Tex