I'm really frustrated

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Pat
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I'm really frustrated

Post by Pat »

I have been so good on this diet, meaning I have adhered to the diet. I have been on Entocort for at least 2 months and no improvement. Some days I think maybe things are getting better and then a day like yesterday happens. I had an accident in a sporting goods store while shopping with my DH ( I think that means husband). :sad: I was trying to get to the bathroom in time, some did slip out and fortunately most went in the toilet. I guess my new doctor may be right and I also have IBS. Does anyone else also have IBS as well as MC? How does one manage this? I just want to cry.

Pat
JLH
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Post by JLH »

Pat, I'm so sorry, I just don't know what to say. I hope you see some improvement soon.

I did perfectly by going GF and then it changed. I tested for the soy, yeast, and egg. It was the %^#%# soy. I'm still waiting for remission though so I can eat chocolate, fruits and vegetables again w/o problems.

Crying may help you feel better. This disease really sucks..........I've been stressed and depressed. I went through breast cancer 10 years ago and I never said "why me?" This disease makes me say "why me?"
DISCLAIMER: I am not a doctor and don't play one on TV.

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Joan
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Post by annie oakley »

Hi Pat, I am so sorry you are feeling so bad. This is such a sucky disease, but you have us. Maybe you're system is just taking it's time. Not everyone improves fast. I didn't but I did improve. There is light at the end of the tunnel. :bouqueofpinkroses:
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Gloria
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Post by Gloria »

Pat, I am so frustrated for you, too. You don't have very many foods left to eliminate. Are you eating any foods that you've never eliminated? Like rice or bananas or applesauce?

I can't help but wonder if you have a parasite. I know you've been tested, but they can be very elusive. I've read that sometimes it takes several tests before they show up.

I don't think that IBS is as constant as the problem you're having. I believe it comes and goes, unless it's MC that has been improperly labeled as IBS. I could be wrong, but that's been DD2's experience.

I wonder if you could write to Dr. Fine and get a referral from him? None of the doctors you've seen seem to be able to help.

Gloria
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tex
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Post by tex »

Pat,

I'm so sorry that you're still unable to find relief. I have to agree with Gloria. At this point, it's becoming pretty clear that something else may be at issue, and I don't believe that it's IBS, because she's right about IBS - it waxes and wanes. It may be an MC trigger, or a parasite, or an infection, (such as C. diff, staph, or ?), but something is causing your MC reaction to continue indefinitely. If it's a food or medication trigger, it's probably something that you ingest every day, because you "know" that it's safe, or you've never considered it to be a risk.

Look at what you're ingesting carefully, (again), and be suspicious of everything, no matter how trivial. Don't assume that anything is safe, without thinking about it very carefully. Whatever it is, you've, (we've), got to figure out what it is, and eliminate it.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat
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Post by Pat »

I've ask every doctor about C-diff and they just act like that it couldn't be that. They say I would be so sick that I would be in the hospital. Seems like there have been people on this board that have been tested, albeit several times before getting a positive test. Were they that sick?

The only thing "new" is sweet potato.

I've had all the traditional dr parasite tests available. All neg.

Joan,

Are you not eating any fruits or vegetables? I am eating only a few fruits - applesauce, raspberries, and some blueberries. And only a few very well cooked vegetables.

Thanks all for your support. I would never be able to make it through this without it.

Tex,

Thanks for "fixing" the site problem. Why would anyone want to hack this site?

Pat
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Pat

Post by JLH »

For the most part, I'm not eating much in the way of fruits and vegetables. I guess I over did the applesauce but I should try eating it again in smaller amounts. I am eating baby food squash and carrots! I figured they'd be the most digestible. I couldn't find the package frozen squash at the grocery. I need to try a different one.
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Joan
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tex
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Post by tex »

Pat,

For some strange reason, doctors almost always have that response about C. diff, because like MC, they mistakenly consider it to be a "rare" disease - I suppose it's their default response. A lot of people mistakenly believe that if you have C. diff, you will have blood in the stool, but that's not always true, sometimes it is occult, or even missing.

If I recall correctly, a couple of years or so ago, one member, (tendertummy), had her doctor give her the runaround for several months, before we finally talked her into insisting that her doctor test her for C. diff. Her doctor reluctantly agreed, but assured her that the test would be negative. Sure enough, it was. We nagged her to insist on a second test, though, and she did indeed test positive on the second test, as I recall. She had to take the two-week treatment twice, the second time with Vancomycin.

Katy recently had a staph infection for about five or six months, I believe, before her doctor finally tested for it, along with a C. diff test, and found it. To my knowledge, quite a few of our members have had a C. diff infection, but I'm not aware that any of them had to be hospitalized because of it. Most members in that situation just assume that they have refractory MC, so they suffer needlessly.

C. diff does usually have pretty severe GI symptoms - the problem is that most doctors don't realize that MC can sometimes have symptoms almost as severe, for some of us, so it's not always easy to distinguish the difference. If you don't have severe abdominal pain, or cramps, you probably don't have it. Most of the members who have had C. diff, rarely post anymore, these days. I believe that Sunny was the last one, for example. Typically, C. diff will make you so sick that you will feel reluctant to get very far away from the bathroom. As I recall, though, tendertummy never stopped going to work. Maybe Katy can tell you what an internal staph infection feels like.

From what I read, testing for parasites also has a very poor record of false negatives in this country. Doctors consider modern conditions to be too sanitary to allow for the possibility of parasite infections, so they generally discount that possibility, and the tests apparently aren't sensitive enough to detect them in many cases, anyway.
Pat wrote:Tex,

Thanks for "fixing" the site problem. Why would anyone want to hack this site?
A lot of younger people with computer skills, (mostly in Euro-Asian and Mid-East countries), have way too much time on their hands these days, and instead of using their skills for something constructive, they find that it's much easier to be destructive, instead. They download computer applets, that instruct their computers to search the web for discussions boards, and automatically register on those boards, so that they can include a link back to their own websites, in order to improve their ratings with the search engines, (the more links there are back to their site, the higher their index ratings with the search engines). I'm sure that the fact that this board has customized registration filters in place, that eliminate computerized registration, does not set very well with those who have gone to the trouble to create all those scripts for automatically registering on php boards. Hacking is an adolescent attempt to get revenge for shutting them out. The don't seem to care that some of these boards supply vital support for people with serious medical issues, who need to exchange health information, on a regular basis.

It could have been worse, I suppose.

You're most welcome.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat
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Post by Pat »

Tex,

I normally don't have abdominal pain or cramps except sometimes before a big BM, like Friday's incident. I guess I am just frustrated. Hopefully Dr. Schiller will have some ideas soon or maybe time will help.

Pat
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