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Hello I am New...This is my story

Guess you could say that I have always have stomach issues. When I was 19 years old I started getting really bad cramps in my sides (like the ones you get after you run a lot) they would last for a while then go away. Some days I would have diarrhea, and there were time I would go weeks without having a bowel movement at all. Eventually when I would start cramping, it hurt so bad that I would start throwing up and end up in the hospital. I was in and out of the hospital for months running test after test in my home town with my health on a steady decline and no diagnosis. After a colonoscopy that I had done, my stomach started to swell and looked like I was about 7 months pregnant, felt like it too. I could feel stuff rolling around in my belly. The pain was unbearable. My mom then decided to get a second opinion, she made me an appoinment with a Doctor at the Houston Methodist Diagnostic Clinic, in Houston Texas. The next day me, my Mom and my Dad gathered all of my records and drove four miserable hours to Texas for what we thought was going to be just a day trip. I am not a very big person, I have never been over 120 pounds. When I got to Houston, I weighed 88 pounds, my lips were blue and my major organs were beginning to shut down. Right in front of me the Doctor took all of the records we brought with us and threw them in the trash. He immediately started hooking me up to machines and IV's and literally the next thing I remember is waking up in an ICU room. But lots of things were different. First thing.....I thanked JESUS CHRIST that I was alive, I felt usually so much better, second I freaked out a little because I now had an ileostomy and had no idea what it was and how long it was going to be there, and last I was scared, I had tubes everywhere, but I had peace too because I just knew that now everything was going to be ok.

I was diagnosed there with Crohn's Disease, they took part of my ileum out and gave me a temporary ileostomy. That day they drained one liter of abscess from my stomach (that is what I felt rolling around...it was puntured during the colonoscopy). Four months later I went back to have the ressection surgery. I have lived with Crohn's now for 13 years. I will be the first to admit that it is not the easiest road but I know this road was chosen for me for a reason, so I try to make the best of my situation. I am so blessed and thankful to be alive. I have had two beautiful healthy children that I thought wasn't going to be able to have since being diagnosed.

I am currently taking Humira biweekly, have been for a year now. I really didn't like it at first, but I am ok with it now. I notice that I get a skin reaction for about a day on my belly after I get my shot, I wish I could do something about that. But I has maintained my flare ups so far. I also take Colestid to slow down my food once it reaches my colon, that is part of the reason why I continue to have diarrhea, that I think is a flare up. There ia still a hole between my ileum and colon from my surgery. I have also noticed that I get really bad headaches, does anyone else have this problem???
 

David

Co-Founder
Location
Naples, Florida
Hi Mezza and welcome to the community!

Wow, it sounds like your road to diagnosis was a tough one. How scary! Thank god for that second opinion :)

Regarding your ileostomy and those headaches. Do you by chance supplement magnesium? People with Crohn's disease and resection are commonly deficient in magnesium which can lead to headaches. In addition, do they monitor your vitamin B12 level?

All my best to you!
 
What a scary experience...thanks for sharing it, and thank God you took that miserable 4 hour car ride that ultimately saved your life!
I have had similar experiences with the extremely bloated pregnant looking stomach, large abscesses, and a bowel re sectioning. Fortunately, my abscesses were caught before they became as life threatening as yours, though. As far as the bloating, I've even had people at the grocery store come up and ask me when I was due! I mean, I get it, because the rest of me would be teeny tiny with this huge belly, but it was still very frustrating. I wanted to get a shirt made that said I'm not pregnant, I have Crohn's! :).

As far as the injection site reactions that are bothering you- could you try taking Benadryl before injecting? A hydrocortisone cream may also be helpful if itchiness is a problem.
Headaches- Many of the Humira type drugs gave me terrible headaches. Especially Cimzia once they doubled my dose. When a headache was related to a medicine I couldn't really find relief. When I am on a medication my body seems to tolerate okay, and I have headaches, one thing that I have noticed is that often times they are linked to not drinking enough water. I have noticed that I need to drink at least 4 bottles of water a day (or 8 glasses) to keep headaches at bay. I don't know if it's a dehydration thing related to the diarrhea, or what.

Best of luck to you, and welcome to the forum!
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
Hi Mezza,
Welcome to the forum. I know you will find this forum as helpful as I have.

I have a story alot like your. I was told after a colonoscopy that looked normanl that I needed my apendix removed. When they removed my apendix the also found crohns and did a resection on the spot. Seven days jater I saw something like water coming out of my wound so I went to the ER just to makeDr came in and said that my resection has failed and they need to operate. I was rushed into surgery not knowing what was going to happen. When I woke up I had a ilyostomy on my side and didn't know what to thing, all I could say was, I didn't sigh up for this, I just wanted my apendix removed. Well, I had that ilyostomy for 9 months and then they reversed it, the best thing I ever did. Not I'm all hooked up again but 5 months after the reversal I'm in a flair. When it rains it pours. I started Imuran 3 months ago and it seems that it is starting to work.

I hope and pray you find this site as helpful as me. I find the chatroom a great help.

Keep coming back

PS: I also went from 160 to 123 in 3 weeks while in the hospital.

Jim (Pops)
 
Welcome Mezza, That is a scary story but I am glad that you made it through fine and they finally found out the issue.. I have to take Benadryl before every treatment because the one thing that helps me with the Crohns and the MS , I happen to be allergic to it
 
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