• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Howdy

Hey guys. Been reading this forum off and on for awhile now. Decided to join today. Here goes:


YEAR ONE: I was diagnosed in 2007 after having the flu that never went away. During they time of testing and waiting, I was getting sicker and sicker as the minutes passed on. Once a vibrant and energetic young man now reduced to living near the toilet in the fetal position at all hours of the day. I got so bad that they almost didn't want to put me under for my colonoscopy for fear of me not returning or something, I can't remember. I drank that horrible liquid they asked to me drink, only to find out that I didn't need to because the doctor told me that everything I ate or drank was out of my body within 20 minutes or less. Well, we waited another 4 weeks for the doctor to tell us he isn't sure what I have right now, it's either Crohn's or ulcerative colitis. They started me on Pentasa and big doses of Prednisone and sent me on my way. I lived with that diagnoses for 4 months until I had another severe flair up. I went to the doctor's office for my check up (ironic I was having a bad flair), and he told me I have Crohn's that has affected 85% of my colon. YAY!!! At least I had something to call it now. He sent me on my way with with a refill of my meds. Everything seemed great for the first year, no big deal. Just stay away from the foods that make me sick and I'll be fine.

YEAR TWO: I took a job travelling the US working on military equipment and also started me on a new insurance plan, and it has the dreaded "pre-existing condition" clause. So that means I was buying my very expensive meds one week at a time in a town 900 miles away from home. Well, at that time, my Pentasa decided to quit working. I dealt with all the cramping (every 3 minutes), having to go every 24 seconds, blood in the stool, the vomiting, the chills, no appetite, etc for 3 weeks. I finally went to the emergency room where they saw me right away after I told them what I have and how bad I hurt. They gave me all the necessary medications and told me to sleep in the room I was in. I woke up 4 hours later and they told me I needed to be admitted. I wasn't happy about it, but I was in too much pain to protest. I was there for 5 days (filled with painful cramps and the need to go to the bathroom every 32 seconds, and yes, blood in the stool until the last 2 days of my stay) with talks of surgery that was brought of by that battery of tests I received (CT scans, stool samples, blood samples every day at 4 am, etc.). Then the local GI came in and told me if I had waited another week, that I wouldn't be here. After he scolded me, he put me on Asacol. I was doing well with the Asacol and he sent me on my way with an excuse to miss work for a week for rest. After that, I went back to work and haven't had a problem yet.

YEAR THREE: I finally transferred back home to work and I was doing great. Then the all too familiar cramps and pain and everything else associated with that came back. I went to the ER 3 times within 2 months. Never admitted me. Now, I am talking with my doctor about putting me on Humira and seeing how I do. I have a feeling the Asacol and trying to stop working. But the bad part it, I keep getting C. Diff. and I keep getting put back on antibiotics and it goes away for 2 weeks, then its back. I've had it 5 times this year alone! If it's back this time, no Humira until it never comes back. I hope I don't have it again so I can get on it.

Well, there's my story.
 
Forgot to add that recently had an appendicitis scare that turned to be the Crohn's spreading into my small intestine. The doc suspects that my last recent flair happened there. I always seem to be having flairs. Now, that have two places to happen. Joy.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Gibby and welcome!! Hope you can beat the c-diff so you can try the Humira. There is a Humira club on here in the treatment section. Stick around and good luck!!
 

DustyKat

Super Moderator
Hi Gibby and :welcome:

I'm glad you found your way here. I too hope that you get the C Diff cleared up once and for all. What is the plan if it that doesn't happen?

This is a very friendly place with loads of information and experience. I hope you stick around so we can get to know you better.

Welcome aboard!

Take care, :)
Dusty
 

Entchen

Chief Dandelion Picker
Hi, Gibby, and welcome to the forum. We're glad to have you here. I hope that you can get relief from your symptoms soon.
 

Astra

Moderator
Hi Gibby
and welcome

really hope you can get rid of the C dif, and get on the Humira, fingers crossed!
glad you found us, lots of support and friends here for you!
lotsa luv
Joan xxx
 

ameslouise

Moderator
Hi Gibby and welcome!

I'm kind of surprised they haven't put you on a course of high dose Pred to knock things down while you are waiting for the Humira, which can take months to kick in. You are suffering so much and should have something at least for the cramps and uncontrollable trips to the bathroom. Pred is cheap and quick. It has lots of crazy side effects, but it has brought relief to many of us really quickly.

Good luck - keep us posted - Amy
 
I refused the high doses of prednisone, though they do want to put me on them. I was about to be taking 80mg a day. I'm not really suffering that much anymore. I've just kind of gotten used to it and learned to deal with the pain to the point where I don't feel it anymore. And any and all the cramping medications that are on the market the doctors want to prescribe me don't work. So, as far as pain and cramps, just dealing with it any way I can which is to just get used to it and live a semi-normal life. Though, my bathroom trips have diminished to countable number now, anywhere from 4 to 8 times a day, depending on what I've eaten (which everything pretty much makes me sick now), or if the Crohn's just wants to be a child for the day.

I know its probably bad to say that I gotten used to all the pain and suffering, but I have. Its what I do.
 
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I failed to mention this: when I was first diagnosed, the Crohn's was affecting my entire right side of my colon, the entire portion where is connects to the left side, and all the way till about halfway down my left side. Now is has spread to the rest of the unaffected areas and now has spread into my small intestine.

Also, on a few occasions, I would vomit every morning. That would last about 2 to 3 weeks. When I do that, I know that I'm about to get real sick and to start thinking about going to the hospital.
 
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Hi Gibby

I just wanted to say welcome and it's great that you joined. I have LERD which is like GERD but it affects my larynx a bit more. Good luck with the Humria when you start it. Take care
 
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