My story, long, sad and confusing

Crohn's Disease Forum

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Apr 22, 2012
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Im new here, and thought this would be a good place to start...

Im at the moment diagnosed with the following : crohns disease, ileoanalanastomosis, sacroilitis.... A few years ago they thought I had colitis, instead of crohns....

My story starts in '91....
Bleeding from the rectum, I thought it was something simple like hemorrhoids.. A few weeks went by, and I went to the doctor who quickly referred me to the hospital, for a coloscopy.. Very fast it was determined that I had some form of IBD, likely colitis...
Within a few months the diagnosis was clear.. Colitis....

After a year from first symptom, I was treated with different medicine locally, but with no real effect, then they tried prednisone, and I worked, at least for a little while, then the bleeding came back... and they just kept treating it locally and with different ineffective things..

All most to the month, 3 years after first symptom I moved across country, and my symptoms escalated from 20 cm to 60 cm effected intestine in less than a month. At this time my new doctors tried treating me with imurel, which just gave me other problems, I don't know the English names for it, but it was big red besting like patches on my legs, and muscle spasms in my spine.. So they stopped that instantly, and then offers me prednisone again or operation.. I had a bad trip on prednisone last time so I opted for the colectomy, and after a few months I got the ileoanalanastomosis. And I loved it!
It was hard, really hard, for about a year, but after that I was completely symptom free for almost 6 years.

Then I started working at the hairdressing salon I work at now, in August I'Ve been here for 5 years.. At this point I'm still symptom free... But here I get more responsibility, and I love it... It's a great job... But after a few months I had a routine tjekup, and they discoverd that I had sores in my small intestine... At first they thought it was pouchitis, but after a few unsuccessful treatments they started talking about crohns, and I got scared... All this time I consoled myself in thinking that it was only colitis, and that I was cured with my operation ;)

And since then its been going down hill :(
After a round of remicade, they finally settled on the fact that I had crohns... My lumbar region started playing up... They found out that I was making antibodies for the remicade, so they stopped it, but then my back went nuts... And they started remicade up again, as part of a medical trial. Only to switch me to humira, because of the antibodies....

So that's where I'm at now with the crohns...
I've since got the diagnosis sacroilitis, and at the moment I'm wating for an MRI scan, and only being treated with humira and oxycodone... And feeling stressed...

I'm having panic attacks, crying uncontrollably, hating going out ( even to work) having ticks (eye and finger) sweating under pressure and stuff like that...

But trying to cope with it, best I can...

So.... That was my story... Thought I would start out with all the dirty details, so I didn't have to explain it later....

Thanks to all who read the whole mess ;)

Moonmistress aka Sabina....
 
Hello Sabina
Very sorry to hear of your current problems and hope they will soon be resolved.
Your reactions are understandable considering the complications you are currently suffering.
Have you asked your doctor for help with these symptoms?
Sometimes we need a doctor with whom to share the problems, a problem shared is a problem halved.
There may be some medication the doctor could offer to help you.
It is a very stressful situation for you and you need some help to cope with it.
Feel better soon
Hugs and best wishes
Trysha
 
Welcome Sabina! We all have some idea of what you are going through as most of us have been there somewhere down the line. I know it's hard but we crohnies are a tough bunch lol! Let us know if you have any questions or just need some support!
Again Welcome!
 
I am so sorry. When I flare, I get tics in my right eye, and have lived with panic attacks all my life. Once I started on B12 and D, my panic attacks slipped away. I was low on so many vitamins that no wonder I was crying all the time. Plus, let's face it, pain can wear on you. I'm in a minor flare right now, even on Humira. I was so shocked to get one as I was under the impression that once you got on Humira, you'd never flare again.

Not.

So, I'm on a liquid diet, taking my vitamins, but still, it's wearing on the body and the psyche, making me more emotional.

I do know it will pass once I'm feeling better and that is the best knowledge one can have at fighting depression/panic.
 
Hi there and welcome to the forum :) I'm glad you found your way here!

Carrollco brings up what I was going to mention. Vitamin B12 and Vitamin D. When was the last time you had these levels tested and what were they? I ask because people with Crohn's disease are commonly deficient in one or both and some of the current symptoms such as the anxiety and ticks can be a result of deficiencies in those. If you haven't had your levels done, get them done ASAP and get the specific numbers once you do and share them with us if you're comfortable doing so that way we can provide additional insight.

We're here for you!
 
I get testet reguarlally. - like every few months, and i never had any problems with B12, but every winter ( from September to April) I take vitamin D supplements... Or else I get depressed... What I'm feeling right now is nothing like my winter depressions.

I almost never show my problems in blodtests, not even when i have a really bad flare.. They never get detected until i get a scope inside to take a look around... so usually I talk my way into some kind of diagnosis, so I can more or less self medicate at least with supplements..

Thank you all for welcoming me - and for listening...

Besides all of this sadness and health problems, I consider myself lucky, because I have beauty training, so people can never tell when I'm feeling sick, because I apply a lot of makeup... ;)

What do people do here... Share photos of themselves, or just avatars?

Sabina

HD
 
Hi Sabina,

Some people like myself use personal pictures in their avatars. Others do so in their profile picture. We also have a "Face behind the post" thread here where some of us have shared personal pictures.

Again, welcome to the forum :)
 

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