Discouraged

Peggyanns1955 · Post by **Peggyanns1955** » Sat Feb 26, 2011 5:34 am

My doctor called with the biopsy results, I was informed that I do not have MC. I asked about looking at my mast cells. He told me that that is getting into the very rare conditions. He will consult with the gastro. doctor and get back to me. I then attempted to eat like a 'normal' person. The cramps got worse and the visits to the bathroom are getting more frequent again. So, its back to a bland low cal diet. The doctor wants me to take immodium, however I can be C and then I get more cramps. I am very discouraged. I will have to have more testing, more time off from work, more uncertainty. At least when the doctor told me he believed I had MC, there was a name to it and I felt there was something I could do about it. The doctor does not believe I have food intolerances. I just don't know anymore. I feel kind of embarrassed about things. I cry easily. Oh well.

peggyanns1955

starfire · Post by **starfire** » Sat Feb 26, 2011 7:17 am

It's no wonder you are depressed. To be ill and not be able to get a diagnosis is a very depressing place to be.

Try to hang in there and keep pushing for a diagnosis. Even if you have to change doctors.

Love, Shirley

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 7:54 am

Sometimes im still not convinced. I've lost over 35lbs since October, two colonoscopies and my docs still aren't 100% convinced so how can I be. I feel miserable,

TooManyHats · Post by **TooManyHats** » Sat Feb 26, 2011 8:20 am

I would ask for a copy of my pathology report. Under HIPAA you are entitled to it. Then you can read it for yourself.

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 8:49 am

I do have the reports and have posted the results on here. Everyone on here says MC, docs say maybe.

harma · Post by **harma** » Sat Feb 26, 2011 10:03 am

Well Peggy normally I would say to somebody be glad you don't have MC, but I do understand sometimes, when you're feeling so bad, not knowing what is wrong is even worse. I do remember the four months before my diagnosis, I also felt desperate. I was not happy to find out I had MC, but at least I had at name, I got medication that works and as a gift of god, the greatest blessing of all, I found this loving support group.

That your doctor does not believe anything about your food intolerance, that's normal, almost all GI's are like that.

Have you also been tested for celiac, Crohn and UC?

Well I can only hope you will get clarity soon

Joefnh · Post by **Joefnh** » Sat Feb 26, 2011 10:32 am

Peggy & Lisa As Harma said its tough not feeling well and not having a definitive diagnosis. Sometimes though we just have to go by the old adage.

"If it walks like a duck and quacks like a duck... it must be a duck"

Peggy irrelevant of the Dx you still have to listen to your body. It will tell you whats wrong and what foods to avoid. Prior to my 'official' Dx I had started that process, i found that I could not eat salads, then I could not drink milk then I could not tolerate pasta.

Lisa in your case both symptomatically and histologically you have MC. It does sometimes make it easier to accept the fact once a doctor says its definitely MC. But look at it this way, your doctor does not put up with the symptoms every day and does not suffer the way you do. What do you think he would say if he spent a week feeling what you feel? Many doctors are still unwilling to make the Dx, because in their minds due to outdated info, that MC is a rare disease of someone who is over 60 years of age.

--Joe

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 10:39 am

Ur absolutely right joe. I would accept it if I got a definitive answer. Question, how did u find out u had chrons. Did it show up on colonoscopy.

TooManyHats · Post by **TooManyHats** » Sat Feb 26, 2011 10:59 am

It does sometimes make it easier to accept the fact once a doctor says its definitely MC. But look at it this way, your doctor does not put up with the symptoms every day and does not suffer the way you do. What do you think he would say if he spent a week feeling what you feel?

BINGO!! Oh, what I wouldn't give for my doc to spend a week in my shoes. I'm thinking she'd have some trouble looking me in the eye and telling me that MC has nothing to do with food intolerance.

Joefnh · Post by **Joefnh** » Sat Feb 26, 2011 11:58 am

You know Lisa & Arlene. So what if you don't have a 'definitive' Dx the real question you need to ask yourself, what are you going to do to get well... Whether a doc says its MC or not you still have to work on getting your lives back. A label means nothing your symptoms do.

Lisa trust me from all of our talks offline, your symptom and the pathology report - you DO have MC; of that I am certain, especially in the light of histological findings. Remember your doctor was biased going into this... He even wrote on the biopsy samples. "To Rule Out MC" it seems to me he had his mind made up and did not want to be confused by the facts. Remember the pathology report did show "significant infiltrates". Again I ask now that you have MC whats the next step?

lisa15601 wrote: Question, how did u find out u had chrons. Did it show up on colonoscopy.

Lisa for the Dx of Crohns it was first noted by a blood test that I would be at risk of having it. I have a rare version of Crohns in that it affects mainly the middle portion of the small intestine, not the end of the small intestine and cannot be seen by either a Endoscopy or colonoscopy procedures. It was only visible on the pill camera test. More commonly Crohns can sometimes be seen during a colonoscopy, if the scope can reach the terminal ilium which is the section of the small intestine where it enters the colon.

--Joe

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 3:15 pm

Believe me joe I am looking for what im going to do to get well, but if I don't have a doc that knows what's going on, what do I do.

Joefnh · Post by **Joefnh** » Sat Feb 26, 2011 3:34 pm

Lisa for a good number here we have found that we have to take charge of out own health by sharing and listening to others about what works and what does not. If I had to take a guess a good 80% of what this group has found to work was not discussed or supported by our doctors. They do not have the disease we do

I believe that the role of the physician here is to supply medications, monitor overall health and as needed support our decisions about diet. For diet it really is just a matter of listening to our bodies and slowly adding foods to determine what the intolerances might be.

Beyond that some here pursue alternative therapies like acupuncture, meditation or lymphatic massage to aid in supporting wellness. While these treatments do not directly treat MC or Crohns they do support the body and mind as a whole so that it can deal with the disease.

Lisa at this stage what MC related meds are you on? I know you had been looking into finding out what foods work for you, how is that coming?

--Joe

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 3:54 pm

On sulfasalazine 500mg three times a day. Tried imodium for the first time the other day and I think it worked. Im still hurting with muscle pain, but I guess that's part of it. Diet wise im trying different things until I get my food tolerance kit. Going back up to boston this week to a MC specialist.

lisa15601 · Post by **lisa15601** » Sat Feb 26, 2011 3:56 pm

I tried lialda last week ya and it came out whole, well mushy the next day. I don't think it should have been that way and it made me vomit and I ended up in the er, so I went back to the sulfasalazine.

Deb · Post by **Deb** » Sat Feb 26, 2011 3:57 pm

Lisa, it's a scary thing when you discover that your doctor doesn't have all the answers and you have to take the necessary steps for your own health. Nobody knows your body like you do. I remember, years ago, when I decided to go off estrogen (due to an early hysterectomy). My doctor was not
in favor of it but I did it anyways, though I was kind of scared.....what if???? The next year she was having doubts about estrogen and the year after that she had taken most of her patients off of it. I just knew I didn't like how I was feeling and had become convinced the estrogen was a factor. When I was diagnosed with MC and got a phone call from a doctor (not my regular as she was on leave) that if I continued with my D problems to take Imodium and if that didn't help come back in and see her. That wasn't adequate for me and this was the Mayo Clinic. I was fortunate enough to find this forum, ordered the Enterolab tests, went gluten free (which is all I've had to do at this point) and have a pretty normal life back. But that is due to my taking control of my own health, nobody else is going to do it for me. I'm anxious to educate my doctor at my next appointment!