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Crohn's Disease Forum » Your Story » Lots to learn


08-01-2015, 02:50 AM   #1
M43
 
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Location: SLC, Utah
Lots to learn

Hi all,

I am in the process of being diagnosed with CD. I have been sick to my tummy for 4+ years, have had 2 blood clots and have suspected CD for some time. However Dr.'s could never find anything conclusive. Just recently for the first time my inflammatory markers were elevated (CRP). With that the constant tummy issues and the idiopathic hyper-coagulation all things are pointing to CD.

Here is the strange thing, I have little if any D and no bleeding and have normal bowel movements. My worse symptoms by far are what is being referred to as "extra-intestinal" manifestations. They are just horrible, they include extreme burning under the skin, bouts of freezing freezing cold, sweating, sore muscles and chills. Has anyone else experienced these as there main problems?

What treatments are available for me. I dread the thought of immune suppresses but am guessing that is where I might end up

Thanks!
08-01-2015, 10:42 AM   #2
afidz
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Welcome to the forum, sorry that you are going through everything.

Not all people with IBD have D or bloody stools. Some people get constipated, others, like yourself don't have bathroom issues. Thats why Crohn's is so complicated. There is no textbook answers or list of symptoms.

For the last 3 years or so, it seems as my Crohn's has only flared through extra intestinal manifestations. I get hives on my arms, my vision gets blurry. A few weeks ago I couldn't lift my arms. I have experienced the cold that you talk about. Not many people on here have. I thought it was normal until I brought it up.

I know immunosupressants are scary, but just keep in mind that they have to list all of those side effects because they happened in the drug trial. If and when you start them, be aware of the major ones and when you should seek medical attention, but other than that I wouldn't pay too much attention to them. I have been on a few different meds throught my time with Crohn's. For most of them, I didn't even experience one side effect, and the others that I did, it was something so minor that it didn't matter because I was feeling better.

I hope you get answers soon and can start fndign a path to feeling better
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
08-01-2015, 11:51 AM   #3
Tuff
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Location: Ontario

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Welcome to the forum. Are you on blood thinners? I was told I'd have to stay on them permanently after my pulmonary embolism. I get sore arm muscles sometimes, and this weird sensation of chills in my bones. It feels really awful but is painless.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-01-2015, 05:14 PM   #4
M43
 
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Thanks to both of you for your thoughts! Yes I am on blood thinners for life, both of my blood-clots came with nearly fatal Pulmonary Embolisms as well. I am on Xarelto (so much better than Warfrin) no blood tests or dietary restrictions, just one pill a day and that's it.

Another odd thing about my illness is that I sometimes feel well but other times just awful, and those up and down feeling can happen throughout a day sometimes hour to hour. Is this something any of you have experienced?

While I don't often have D or bloody stools, I have extreme tummy cramps and nausea almost everyday!

From that I have read it sounds like the first line in defense maybe Budesonide followed by Pentasa. Has anyone had luck with that combo?

Cheers!
08-04-2015, 05:24 PM   #5
Tuff
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I can't afford meds like Xarelto, no insurance. Also, it doesn't have an antidote like Warfarin does. My INR is very stable anyway, so I get tested once a month.
As to Crohn's meds, everyone responds differently. I was on long term antibiotics, which did not help. Then Pentasa and Azathioprine, finally on Remicade which put me in remission. Steroids like Budesonide are mostly used short term, because of the side effects.
Keeping a food diary might help pinpoint causes for your nausea and cramps. There are natural aids to that too, like ginseng or peppermint tea.
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