Re: Welcome Selena- reply to Patsy (long)

[Guest guest]

Hello Patsy,

Good to meet you too. I am sorry to hear that you are having such problems.

It must be very exhausting for you to have to worry about all this and cope

with your CMT related problems as well. Please remember I am new to CMT, and

some of the symptoms you mentioned may also be part of that disorder.

However you asked specifically about my diagnosis, so I will answer from

personal experience only. There are other inflammatory and non inflammatory

bowel conditions which do not have quite the same symptoms as Crohn's. Your

problem sounds very troublesome, but may easily be able to be sorted out.

These things tend to get slowly worse, and it is not until they are a real

bother, that we think about how big an impact they have on our lives. This

was the case for me.

From the age of about 16 I would get spells of pain in the right side of my

abdomen. It was diagnosed as a grumbling appendix and I pretty well ignored

it from then on. It usually cleared up after rest and never became a big

problem. A colonoscopy last year showed lots of scar tissue around my

ileo-caecal valve (correct spelling for this part of the world, but keeps

showing up as incorrect on the spell check. Sorry) and appendix which is

apparently typical for Crohn's disease. So I can say with certainty that I

have had it at least 35 years. Colonoscopy is the visual examination of the

lining of the bowel and together with certain blood tests, is the most

accurate way to diagnose many bowel disorders.

For many years I would have pain after eating. I thought it was indigestion

and even thought I had an ulcer, but it never lasted long enough to get it

checked out. Again this can be typical of Crohn's disease in the upper

gastric tract- below the stomach. It is possible for Crohn's to affect any

part of the digestive tract from the mouth to the anus.

Years later, after a life threatening illness and two lots of surgery in

less than a week (not related to the Crohn's) I again developed episodes of

pain after eating, and abdominal pain which I thought was the result of the

surgery. Later as these cycles of the pain continued, I would have diarrhoea

for a few days which would then settle. I would blame something I had eaten

or think I had a gastric virus. Over the last three years, the episodes got

more frequent as did the severity of the abdominal and body pain and ill

feeling. Last year for example, my husband took me for a meal for our

wedding anniversary and I spent the rest of the night vomiting and feverish.

It all settled with antibiotics. This became the pattern every few months.

Last year I noted blood in one bowel action and knowing all the causes of

that, (including bowel cancer) I was eventually frightened enough to discuss

it with my doctor. He referred me to a gastroenterologist who initially

thought I may have Diverticulitis (little sacs forming out from the bowel

which can get infected and cause similar problems) but he said that next

time I had the problem, I was to book in for a colonoscopy. Now I ask you,

who volunteers for one of those? You guessed it, not me. I had to get really

ill before I did eventually have one, and it wasn't so bad after all. I was

asleep for the whole thing, but it did give me a diagnosis, and now I am on

three lots of medication to hopefully keep the Crohn's under control. I am

starting to feel much better, and as I mentioned before, I can now see that

a lot of my illness is the result of the Crohn's, but I can also understand

that lots of other things are more likely to be the result of the

neuropathy.

From my reading, I think that in some people, CMT may occur together with an

auto-immune diseases- one in which the body attacks itself for some reason.

It is thought that Crohn's can also be caused by this process. In my case

there is a strong family history of Crohn's as my father also has it and

there has recently been found to be a genetic link. I am not in a position

to say if diarrhoea is a common event in the course of CMT. Others with more

knowledge and experience than I, will probably want to address this issue.

Good luck. I hope things soon improve, and please, if you have not already

done so, consider getting your problem checked out. A health history and

some blood tests may be all that is needed. If more investigations are

required, I can tell you from personal experience that barium X rays and

colonoscopy will at least give you peace of mind and are soon forgotten.

With best wishes from

Selina

> From: patsy1128@...

> Reply-

> Date: Mon, 23 Jul 2001 11:10:21 -0500 (CDT)

>

> Subject: [] Re: Welcome Selena

>

> Hi Selena & Everyone,

> What were your symptoms for Drs. to diagnose you w/ Crohns? In our

> family, (most of us have CMT), we seem to have bowel problems, loose

> bowels, I thought it is probably part of CMT symptoms. It is hard to

> plan anything because of this, such as outings. lots of accidents, ( not

> being able to make it to a bathroom!!) Very embarrassing to say the

> least! & discouraging too! Well, anyway, happy to have you aboard,

> Selena, & all the other newcomers too. Welcome!

>

>

>