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My Living Hell (Crohn's)

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skinzdogg

Guest
Hi people my name is Steve and I was diagnosed with Crohn's Disease in 2001. That makes it about 7 or 8 years. It started off with massive heart burn and a loss of 50 pounds in about 2-3 months. I was about 17. We couldn't figure out the problem until about a year later when I was told I had an abcess. I ignored it for about 7 months until I finally collapsed with pain and was sent into emergency surgery. When I awoke from surgery I was given the bad news.

After an official diagnosis I was referred to a GI and started taking Flagyl, Cipro, Prednisone, Asacol, and Prilosec. I quit smoking pot, butts, and drinking all the same day. My symptoms only seemed to worsen after I started following the doc's orders. I continued to follow him for about 2 years when suddenly my insurance was cancelled.

So now 19 and on my own I continued to work full-time while waiting for disability. My symptoms mainly consisted of extreme abdominal pain and diahreea. I started to take vicodin so I could continue to work and support myself. I didn't see a doctor for probably around 4 years. Along that time my symptoms came and went and I took pain meds when needed.

Around the end of 2004 I was so extremely weak (Aenemic) that I couldn't even stand on my own and I had extreme sharp pain on one side. I went to the ER where I was told I needed Iron and the pain I had was from an ulcer. This was the last time I saw a doc until September 2006.

Around summer of 06 I started to feel that sharp pain again in that same spot and started to realize that it may be a blockage. Again I ignored it until I was vomiting and in so much pain that I had to be dragged into the ER(Sept. 06). I was immediately admitted and got the NG tube, no food or drink and put on crazy steroids and all the other meds associated. I spent 8 days there until the obstruction started to reverse. I remained on Prednisone and other meds for another 3 or 4 months. I was completely symptom free and feeling great.

I would say I started to feel the obstruction again around the beginning of 2008. I again ignored it till it was unbearable and decided to look for a new GI. I am currently seeing him and this small bowel obstruction is by far the most unbelievable, indescribable pain and discomfort I have ever experienced. I have been on a full liquid diet and meds for prob 3 months and only been getting worse. My doc wants to try remicade or humira but I refuse beccause of the risky and scary side effects. I am currently on my 7 or 8th week of 60mg Prednisone and feeling alot better. As you all know the side effects are horrible and i'm really losin it. I have an appointment in September and i'm almost 100% sure I will be having surgery. At this point im looking forward to it and hopefully things get better for a while. Thats my story so far. Thanks for looking.
 
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skinzdogg

Guest
Pen said:
Hey skin and welcome to the forum. I am on Humira and doing okay, some days good some bad. Been on it 4 months and now bi weekly. Whilst there are risks, there is riskier drugs, and Prednisone is one of them. I am finished prednisone Friday and will never go back on it. MY own opinion. Had crohns symptoms 30 years and dx 16. Been on all drugs, and had surgery 2 times. My frst surgery put me into remission whilst still on Entocort (never a good Idea not to be on something mild) for 6 years. Obstructions are my nightmare, worst then child labour and I am possibly headed for a 3rd. My GI doesnt want me to have it unless absolutely necessary, which means obstructions will have to happen. Scary and painful. YOu are very young and will heal faster and will buy you some time to have a life. You and your gf look like a happy couple and you are lucky you have support, because it is crucial to your lifestyle. Good luck , keep us posted.

Penny
Thank you Pen
 
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skinzdogg

Guest
Thanks Pen. Since im comin off the pred anyway do you think i should try the humira before jumping to surgey?
 
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skinzdogg

Guest
Thanks again. I def cannot handle this pain anymore. I think im gonna consider the humira. i'll post updates
 
skinz-

I have been on Remicade for at least 2 years, every 8 weeks. It has been a life saver. Although I took Immuran with it until April, every time I go to an infusion, when I leave I feel better. I was scared of the long term side effects as well, but I wonder where I would be now without it? I already had one surgery and only have 8" of colon left to show for it, so my options are more limited. I had to have the surgery due to obstruction, and went through the kind of pain you describe before the surgery. I wish you well, and welcome to the forum!
 
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skinzdogg

Guest
Thank you Gadget and glad to hear you still got some colon left. Hold on to it for dear life!
 
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AndyCrohnsPatient

Guest
Hey man Im with you in the same boat. It seems like hell on earth. I suffer daily with pain and diarrhea. Its hard to sleep and everyday i talk to my doctor he comes up with something new. I just wish there was a miracle pill for me to take and get all this past me. I have taken everything and I mean everything for my pain. I had the surgery. Im suffering right now and its hard just to deal with it and i dont know what to do when Im hurting because nothing helps except maybe a hot shower. Im with you and hope we all can get through this pain. Congrats on the girl you found I dont have a girl or many friends because the school i got to, so im just tryin to get by.
 
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skinzdogg

Guest
Hey Andy hang in there bro. This shit sucks but at least it isnt aids or cancer or some other crazy shit. I'm lucky and never have diarrhea prob cuz of pain meds. They even me out. Usually once a day. I'm taking Methadone right now and let me tell you that it is by far the best pain med I have ever experienced. I take 15mg a day and it lasts for soooo long. I'm willing to bet that what i'm taking now works twice as good as say an Oxy 80mg.
 
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tntcacho

Guest
I feel the pain

I feel the pain you live in. I was just told in late feb of 2008 that I have crohn's and I can't stand it. The pain is so bad at times that I just want to get rid of everything in my stomach just to feel normal. My doc has me on 4 different meds plus ultram for pain. He has me on 300mg a day. Which just causes problems with addication for pain killers. It's either live in pain or take the meds.

Just wish that all of this would just go away. Tired of feeling like i'm in jail because I can't leave me house due to the pain.
 
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skinzdogg

Guest
Not sure if its everyone but Ultram absolutely KILLS my stomach and its weak as hell.
 
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