HOW TO WORD THIS?? PAIN LOCATION??

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Permalink Reply by Barbara Engle on August 8, 2009 at 2:48pm

Elaine

Sweet thing, I received an email from you, I know how you feel about having a mysterious illness . I began to have stomach problem as a child. I was diagnosed with food allergies, and treated accordingly. By the time I was 26 my stomach nausea became chronic. I was diagnosed with having an ulcer ( with no test being run) and told to take Maalox in order to treat it. When I was 31 I was hospitalized from what my doctor felt was a gallbladder attack. Four day latter , when all test for gallbladder came back negative , I was sent to a psychiatrist. The final diagnosed, I was a hypochondriac. I did not see another doctor for my stomach issues until I was 36, by that time the pain had become a daily reality along with the nausea, that I could barely function. For the next nine months I was sent from specialist to specialist. Each had their own conception of what was wrong with me , from being a hypochondriac ,to being to fat that my weight was cause me a lot of pain. But when all was said and done one test showed that it could take up to 17 hours for my stomach to digest one single meal. But the doctor could not tell me why. When I was 46 years old I was finally diagnosed with Gastroparesis, half my stomach is paralyzed.

I wanted to know what I had developed Gastroparesis since I was not a diabetic and I had had no surgeries that could have cause such never damage to my stomach. Since I knew Crohn’s disease ran in my family like a plague, I asked my doctor if he thought I had it as well. He said that according to the blood work it was possible, but he did not really want to commit himself to that diagnoses. With picture in hand of my stomach, I tool my problem to one of the doctors associated with the Crohn’s foundation. It turned out, according to the pasture that I had one of the rarest form of Crohn’s disease. To be exact. Gastroduodenal Crohn’s disease. With this information I returned to my gastro-specialist , and he began to try and treat me.

The problem with Crohn’s disease, is that it is very hard to treat. And so is Gastroparesis. So common medication was useless. In fact, each medication tended to cause more problems that it was worth. In the end, I have had to learn how to deal with my stomach problem with out medical intervention.

I don’t know if any of what I had said will help you. I just wanted you to know that I understand your frustration. And I am here for you. I would like to suggest that you add probiotics to your diet! It will help!


Barbara

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Permalink Reply by Elaine on August 8, 2009 at 3:16pm

Thank you Barbara, : )
With my "Mystery Illness" and all the responses I get from people, it is slowly making more sense and will eventually come together. I am sure of that. Either I have one illness that is the cause of all my problems or I might have 2 conditions. Either way I want to know and get my life back on track.

I began my Gastro career with Pepto Bismol! YUCK! That was hard to do. I felt a miracle drug came to be when I finally started to take Imodium.
I also was told possible ulcer. And was given Xantax when it was still a prescription med. I'm on Losec, same as you, without any testing having been done.

I had gall bladder surgery. A gall stone went into my liver and 3 x the amount of toxins were in my body.
My pee had turned to look like mustard. I have had bad luck with Drs. That one made little cuts all over my stomach as if he couldn't make up his mind. The belly button cut was infected for 1 year. I had it coterized many times.

I am learning to take care of ME....and not be so concerned with what everyone else thinks. I live in a very cold climate and my asthma can get really bad with the cold. If I get sick I will be sick for months at time. So from Dec to aprox March, I stay inside. My husband knows and he drives me door to door. I get so many people who say they have asthma too and how they "have" to go out..."they don't have the choice"....
Let them think what they want.

I get the same comments about the diarrhea...(I'll call it that for now). I am too embarrassed to go into detail with people. But if they are out and about....they DON'T have the same problem. I can say it in this group...I often can't hold it in public, so am careful where I go. And have also had times of not making it to the bathroom at home. Sometimes a cough or a sneeze and out it comes. Then into the shower. I even try to hide that from my husband. And he's the one that kept at me to get to the Dr about this.

THANKS again for your response and sharing your story.
I'm over whelmed with researching what I might have. So it REALLY HELPS when others try to help me too.
Elaine

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Permalink Reply by Elaine on August 11, 2009 at 6:51pm

GOOD NEWS. I got an appt with a Gastroenterologist for Aug 25th.

If a new opening comes up, I can get bumped up sooner.

Elaine

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Permalink Reply by Jen on September 18, 2009 at 10:12am

Hi Elaine,

I apologize that I have been out. I had abdominal surgery this summer for gastroparesis related complications. Let us know how your appointment went.

I currently have a diagnosis of probable mitochondrial disease which would explain all of my symptoms. My primary problem with my bowels is slow motility so I get severe constipation. I have to take laxatives on a regular basis but it is tricky because I am also on TPN (parenteral nutrition) so I don't eat much which can cause diahrrea when I am actually able to go. Then I stop the laxatives and get constipated really bad again. Anyway, I can definitely understand your situation. It is very frustrating.

I wish you the best. Update us when you get the chance.

-Jen

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Permalink Reply by Elaine on September 18, 2009 at 10:32am

Hi Jen,
I hope you are near a full recovery from your surgery.

It's a Catch 22.

My problem is diarrhea. I had my Gastro appt. I had a movement episode just as he
finished the colonoscopy. Even though he's the Gastro he wrote about it in his report. Which I really appreciated.
My dx from the Gastro is Collitis.
A specific kind. I'll have to ask my GP for the exact name. It's not Chron's or ulcer related.
All I am to do is to keep taking Imodium.

I have the opposite problem as you. Too much Imodium can cause constipation.

I wonder what normal feels like. lol
Elaine

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Permalink Reply by Jen on November 6, 2009 at 7:55pm

Hi Elaine,

Just thinking of you. I hope that your appointment went well and I'm wondering how things are going with you. I've fully recovered from my surgery, but now have had increasing symptoms of abdominal pain. I was diagnosed with pneumatosis coli via CT scan about a month ago. It is a type of colitis caused by air/gas within the wall of the colon. I guess it can cause pain. I also will be having an endoscopy/colonoscopy next Friday under general anesthesia. I am a little worried because I often have post-anesthesia complications with my dystonia. I'm going to try to get them more information about alternatives to propofol which I think is causing a lot of my problems.

Anyway, I hope you are doing a bit better. I would be interested in hearing how things are going for you.

Best,
Jen

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Permalink Reply by Elaine on November 7, 2009 at 9:59am

Hi Jen,
Thanks for thinking of me. : )
I'm doing better than a few months ago.
I have since been dxed with the
1) colotis, as I wrote above.
2) Severe Vit D deficiency (colitis and this may be related).
I am on prescription Vit D. 50,000 units per week.
3) Dystonia and mycolocnus - but the Neuro said psychogenic....which we totally disagree with.
4) Awaiting a dx of (severe) Fibromyalgia - the Rheumatologist said this is very likely the dx he will be making. I see him again Dec 15th.
Which has caused me such horrible pain, I have had days of being crippled.

I've been put on long term, long acting pain meds. Dilaudud. (it's a form of morphine)
It seems to be working, because I am in a LOT less pain than before.
Also I am going to hospital physio therapy which seems to be helping.

I've been told I'll have to do physio for the rest of my life or I will deteriorate to this point again.

The positive about the dilaudid , is that it causes constipation. So for me, it just helps for me to go normally.
I haven't had too many occasions to take Imodium while I'm on it.

Your colonoscopy worries - When I had my conoloscopy it brought on a movement episode. The Dr wheeled me back into the room and kept me there until it was over.
I don't have them long time like other people do.
I have movement episodes during physio too.

I wish I had advice to on how to help your movements. I'm sorry all I can send is support. I know how you feel. I hope it goes ok. Let me know how it goes.
BIG HUGS.
Elaine

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