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08-10-2015, 09:36 PM   #1
tmaurer
 
Join Date: Aug 2015
Location: Orlando, Florida
New to forum

I am totally new to this forum. I am at the present time sitting in a hospital bed trying to decide what to do next with my Crohn's. I am so thankful to have found this site. I should have contacted you all long before now. I went from 2002 to 2008 being undiagnosed. I suffered many attacks, throwing up, fever, excruciating pain. Spent many nights in the bathroom floor in the fetal position. I was told that there was no way in **** that I had Crohn's. I went to see a colorectal specialist who did a rapid test for bleeding in bowels. He told me he was amazed how fast the blood showed up positive. At that point he decided a should swallow a pill cam to which my GI agreed. It stayed in my abdomen for 45 days. I was lucky there was no perforation. It should have passed in 5-7 days. Lots of prednisone later and it finally did. The results were lesions through out my small intestines. I also had a narrowing in the ileum. I have now been on Remicade since 2008. I did stop for about 6 months and they switched me to Humira. That was not a success. I went back to the Remicade at that point. They have never added anything to the Remicade. My very first attack was when I ate a bowl of ice cream one night in 2002 at about 9:30 at night. The pain was unbelievable. I had induced labor for 14 hours with nothing for pain and I can honestly say this pain was worse. I have had numerous blood infusions & several iron infusions. As I stated I am here in the hospital now because my Remicade not only failed me after all this time of taking it. It also, sent me into an excruciating attack. I have been here since Sat afternoon and it is Monday night. I have had lots of steroids, zofran & Morphine. They told me today that surgery might be necessary but I am not feeling it after reading on the forum. They mentioned trying Cimzia & some other drugs. Desperately looking for answers

Last edited by tmaurer; 08-15-2015 at 09:51 AM.
08-11-2015, 10:44 PM   #2
Tuff
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Join Date: Feb 2013
Location: Ontario

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Welcome to the forum. I'm sorry you're having such a hard time. Hopefully something else will work for you. Let us know how things turn out.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-12-2015, 02:33 PM   #3
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi tmaurer, first off welcome to our forum, we all a very helpful group here. I'm so sorry hear all you've gone through are currently going through. Iv been in a very bad way with CD to, now surgery is usually a last resort so hang in if you can, iv had surgery and iv been great since, so if it comes too that, it should give you great relief. Please make sure though that surgery is really what you want and not the docs.wishing you all the very best and hope you feel better soon.best wishes
08-12-2015, 06:01 PM   #4
Honey
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Join Date: Mar 2013
Location: United Kingdom
Hi there and welcome, so sorry to hear you are in hospital and not feeling so good. I do hope they find the meds that help you and you get better soon. It is not easy but sharing on this forum helps , and getting support. Thinking of you.:
getwell:
08-15-2015, 11:47 PM   #5
Opheliyak
 
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Join Date: Aug 2015
Location: Toronto, Ontario
Dear TMaurer. So sorry to hear you are in hospital. I was diagnosed in 2007 and there were 3areas of serious damage. I was 29 and they were talking rejections and bags. I was placed on a cocktail of steriods, Suphasalasine, Imuran, antidepressants, mood stabilizers.
I had terrible side effects so I cut back on my work, went non processed stopped tea, coffee, alcohol for 2years and started yoga. i had never been able to tolerate smoking anything (it's detrimental for Crohns anyway) but eating cannibis cookies or cakes I made myself has done wonders. I now take a small amount of Mesalasine and only get bloating on occasion but all the bleeding, pain etc. stopped.
I urge anyone with Crohns to try ingesting Cannibis to alleviate symptoms.
Good luck
08-16-2015, 03:19 AM   #6
sickinlk
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Join Date: Jul 2012
Location: Donegal, Ireland

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Hi. That's a bummer. You're not out of options yet though. Pity about remicade failing but it did give you a long remission.
08-16-2015, 11:17 AM   #7
PATTY1386
 
Join Date: Aug 2015
Location: Quesnel, British Columbia
I too am new to the forum. I have been diagnosed with Crohns disease for over 30 years. The best advice I ever received was: Give your intestines a rest by only having clear fluids for about 3 days after an attack. Dr said when we break our bones we give them a rest so we should do that with other parts of our body, rest it so it can heal! I do not take any drugs for my disease. I refuse as most of the side effects are worse than the disease....I am concerned about the long term effects of drugs. I vomit when I feel an attack coming on to clear my stomach and relieve the pressure on my intestines...and it works! I have been gluten free for almost three years and had my first attack since, last week, which I feel was due to a drug I was taking omeprazole...so I quit taking it.
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