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hi everyone, wonder if someone can help. good news i have not got crohns. i have a rare disease of the colon called pneumatosis coli. i hope someone on here can tell me somethink about it. i have had part of my colon took away last month. i still suffering bad with my bowels. not going. and also when i went this morning, fist time in six days. they seem like they was was tissue in my number 2. can anyone explain this please.
 
Hi Nicky and welcome to the forum. I am glad you do not have CD, but I am sorry you have Pneumatosis coli. I have to say that I have never heard of this and I myself have 3 rare disorders.

I have done a good bit of research on some rare disorder. I will have to add this one to my list.

The only thing I can say about the #2 issues is that i might be a shedding of the lining in your colon. I had something similar with my uterus during my menstrual cycle. That is what led to me having to get a hysterectomy so I am sure it is not normal.

Since the colon and uterus are different I would advise at least a call into the GI about it.
 
hi earnallwifey. I kept having pain on my left side just under my breast, and also in my shoulder. first i had an camera where thery seen something and then i had a colonsopy, they thought it was crohns. and then i had a ct scan, and then they found the disease. they had me in within two weeks as it can be fatel. it felt like somethink was popping all the while inside if me. just having it tough after operation and hope it does not come back. but no ones knows about this disease.
 
Hi Nicky,

I am so sorry you are suffering and had to have colon surgery.

I looked on the web and apparently pneumatosis coli has various causes and depending on the causes is extremely serious or not serious at all. It basically means there is gas (air) in the bowel wall. It can happen because the bowel doesn't have enough oxygen getting to it and this is very serious. 15% of the time it is considered a benign finding (no problems associated with it.) It is also known as pneumatosis intestinalis (because it can affect colon and/or the small intestine) It can be caused by bowel ischemia, mechanical trauma, inflammatory/autoimmune bowel disease, intestinal neoplasms, bowel infection, obstructive pulmonary disease, or drug-induced, including immunosuppression therapy. [/B]

What did your doctors tell you was the cause? Do you have circulation difficulties in general, of breathing difficulties? If you are currently concerned about your symptoms (eg. think you are passing tissue), you should definitely give your doctor a call or go to the emergency room.

Hugs and best wishes.
 
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