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Crohn's Disease Forum » Your Story » Just want to know there are others out there like me!!


05-06-2014, 07:43 AM   #1
wonderwoman4815
 
Join Date: May 2014
Location: belfast, United Kingdom
Just want to know there are others out there like me!!

Hi everyone,my problems started over two years ago.i started to get rashes on the side and front of my neck.this then led to restless leg syndrome and eventually last may a left pleural effussion!.i lost just under two stone which NO matter what I eat I cant put back on.after two colonoscopys I have been dx with indeterminate distal colitis.does thirp mean I have crohns r colitis?cant function with this nausea,fatigue itchy skin rashes and feel alone.any advice would be appreciated:-D.xx
05-06-2014, 07:56 AM   #2
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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Indeterminate colitis means exactly that; there is inflammation in your colon whose source they are unable to decide on or discover. Colitis can be part of Crohn's Disease or caused by infections such as C. Diff or any number of other things. They simply don't know why you're sick, they can only agree that you are.
05-06-2014, 07:59 AM   #3
Clash
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With indeterminate colitis means that it is not determined yet as to crohns or UC or something else.

Have they given you any nausea meds? Are they scheduling more tests or treating you with meds for the colitis?

I would make a list of all of questions and concerns and go over them with your GI, that way you will be better informed of what you should be looking out for or any symptoms you should report right away.

You may also want to start a food and symptom journal to keep abreast of all that is going on and how you react, it makes for quick info to share with the GI at appts.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-06-2014, 08:47 AM   #4
wonderwoman4815
 
Join Date: May 2014
Location: belfast, United Kingdom
Hi thanks for the replies:-D.i was started three weeks ago on pentasa 8 tablets a day and a pentasa enema at night.dont know if it related but my joint pain is even worse and alot of pain in my lower back which I never had before!have to return and see my gastro dr on 19th may for blood results and biopsy results taken from my hemi colon?.it is just frustrating:-(.i also am getting the rash erthymatous nodousom on and of,very itchy!:-)
05-06-2014, 10:54 AM   #5
Clash
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Erythema nodosum can be an EIM(extra intestinal manifestation) of IBD. I believe the latest statistic show it to occur in 4% of IBD patients. You could possibly use Google Scholar and the key words erythema nodosum + Crohn's disease, erythema nodosum + ulcerative colitis and erythema nodosum + IBD to get more detailed percentages and info.

Joint pain can also be an EIM of IBD, you could look that up as well. Some forms of joint paint run concurrently with active IBD and others run independently of the disease flares.

I hope you get some ansers at your follow up visit, if things do not improve in the meantime I would definitely keep the GI informed.
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