My Story

[Sick of Crohn's]

Hi Everyone,

My name is Tomica and I am Sick of Crohns. I was diagnosed about 10 years ago after being scheduled for an MRI with contrast. I went in for the MRI because after The lower GI, Upper GI, and other tests failed to show why I was sick this was the next step. After being stuck in the arm several times the technician took two pictures where I had to breath and hold my breath. She then started the contrast and Started the machine again where I had to hold my breath. The machine suddenly was turned off as I heard oh Lord. She begin to call other Doctors and nurses in the room. I asked her what is it am I about to die & can i stop holding my breath. She said I can't tell you. You have to go see your Doctor immediately.
So as I was being wheeled upstairs to my Doctors office, I began to think I'm 25 it can't be my time yet but I guess if I have to go, oh well! I was wheeled into patient room 2 where my Doctor was waiting for me. I watched him as he paced the floor. I asked Doc am I dying what's the deal? He said well your MRI showed evidence of Crohns but that can't be perfectly diagnosed without a colonoscopy. I said oh is it seriouse how many days do i have left. He explained i could have a happy to normal life with the disease but the MRI also showed.... He then asked me what type of birth control methods were I using I took out my pills and showed him I hadn't missed 1. He said well they didn't work so were sending you to your GYN.
So when I called my husband to tell him about what happened he said stop lying u're not pregnant. Okay for some reason he missed the part about I thought I was dying. Since then I have been hospitalized 3 times for more than 5 days. I have had a colon resection where 8 inches of my intestine were removed. I have been on Endocort, Asacol, Predinisone, Imuran and so many other things I can't even begin to name. I am suppose to start Humira tomorrow but went to the Doctor today and found that I have a Signus infection so I think I'll wait. It took me a while to get out of the denial of having a disease. I found out early denial does not work but eating healthy and living stress free helps. What i can say is I'm sick of Doctors visits, copays, medicine, and the cost of medicine, so I'm sick of Crohns.

 

[Jennifer]

Hi and welcome to the forum!

Denial is very common and acceptance takes time. Glad you got a diagnosis and medication to help although you didn't say anything else about the pregnancy. I'm curious if you had the baby and if you were on meds at the time during pregnancy or if something else happened. If you don't want to share its ok.

I just started Humira a few days ago and I hope it works well for both of us.

I'm also sick of all the doctor visits, medicine and insurance hassle but unfortunately that never stops.

 

[Sick of Crohn's]

Hi Crabby,

I actually had a 7lb 9oz baby boy. He is now 10 and doing well but has some stomach issues. After all the test they have ran on him the Doctors seem to think he eats too much and gets impacted. His GI Doc said he eats more than his body can process at one time do I have added more fiber to his diet but I notice he gets sluggish says his muscles ache and is either constipated or the latter. I'm worried it may be the begging of Crohns. When I was pregnant with him I had my first colonoscopy. The GI could only give me a low dose of Demerol so I awake for the procedure and it really hurt. My first dose of Humira had to be put on hold till next week. I was told that if I take it while having any type of iinfection even a sinus infection it would get worse. So I'll be going in next Friday for the loader dose. I guess I'm freaked out a little because of all the side effects.

 

[Jennifer]

So far the only thing I've noticed is the Humira has made me a little tired. Some other people have mentioned fatigue during the loading doses but that's all I've noticed. I took 6MP for over 15 years and Prednisone many times before and at high doses for long periods of time. Those two meds in my opinion are much harsher than Humira will ever be. Medication is always improving so until a cure is found, know that you wont be on the same meds forever. Eventually something else will come out with fewer side effects and better results. All meds have side effects but that doesn't mean you'll have all or any of them. Over the years the only med I had any real side effects from was the Prednisone.

 

[Sick of Crohn's]

I've been on and off prednisone for the last 10 years. Usually I exercise when I'm on it but since I was discharged from the hospital on June 1st up until two weeks ago I have just been taking it easy. Taking it easy made me gain 18 pounds. I was in the hospital from a painful flare up. Usually a flare up makes me loose weight but this time 40mg of Prednisone has caused me to blow up. Now I'm left trying to loose weight so I can maintain my weight and not get too small.