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Crohn's Disease
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Posted 7/30/2024 10:13 AM (GMT -5)
I have been having a hard time for the last four months and see no end in sight. I've been to the hospital 4 times since Easter Sunday and no one seems to be able to help me. I previously posted under "horrible symptoms tests reveal nothing". So far, I have had an x-ray, colonoscopy, ultrasound, endoscopy and MRI and am waiting for a large bowel barium enema. All the tests say that I do not have a blockage. But they do know that my lower bowel, close to the anus, is kinked but supposedly open. They found out when they did the 1st colonoscopy and couldn't get the scope in and had to redo it. I am on TPN and they suggested I use Restoralax, which I am doing along with clear fluids. But I'm still having problems emptying my bowel sometimes even though I have numerous small bowel movements a day. I also have a lot of gas and pain. And there are bubbles in the toilet that I don't know where they come from. I don't feel nauseous though.

I'm miserable most of the day and because of the all the bm's and sometimes accidents I very rarely leave the house. I also don't want much company because I don't feel well and I don't want other people to see me in this condition. I'm making my husband's life miserable along with me since I don't like to be left alone when I'm feeling like this.

My biggest problem is that if they can't find anything on a test they will refuse to do anything for me. And my gastro doesn't think that a surgeon would want to do surgery because I'm prone to adhesions. I just don't know if I can deal with my issues and still stay sane. Any advice?
Posted 7/30/2024 6:07 PM (GMT -5)
I do remember your previous post. It's so disappointing that you seem to have no end in sight right now. Often times, no matter how bad things seem, or how sick you feel, once you get a firm diagnosis, and treatment plan, you can somehow start a positive road to getting/feeling better.

I'm very sorry that I don't have any answers for you. All I could suggest is to lean on your husband as an advocate. Many of us refrain from pushing our health care professionals to hard, out of the fear that they'll abandon us. Your husband can sort of side step that fear by speaking for you and emphasizing your situation, and mainly how you cannot possibly carry on like this.

Even though your GI is against surgery, perhaps another opinion, and potential referral to a colorectal surgeon for an opinion as well.

I know this may not have been an abundance of help for you, but really hope the days ahead bring some answers. Please keep us posted.
Posted 7/30/2024 7:45 PM (GMT -5)
Thank you for the reply.
I was hoping to be able to see a surgeon while I was in the hospital, but they seemed in a hurry to get me out of there. Unfortunately, my gastro was on holidays when I was in so I couldn't pester him about a referral to a surgeon. It's really hard to maybe have to accept that there might not anything that can be done!
Posted 8/1/2024 9:47 AM (GMT -5)
mtb, I too have read your posts & have a great deal of empathy for you. When I was at my very worst with crohns, I only left the house to go to the dr, too many accidents in public. I was in adult diapers for 2 years. The depression kicked in & I went to my pcp.

He put me on an antidepressant with the stipulation I would seek care with a counselor. I had a fantastic counselor that helped me more than anything possible. She helped me understand so much with her suggestions. I urge you to consider seeking care with a good counselor, many will do zoom meetings if leaving the house is a problem.

Take care.
Posted 8/1/2024 3:22 PM (GMT -5)
Hi Susie,
I have in the past gone for counselling off and on. I probably should consider it again since one of my other worries is making my husband's life miserable also.
Am I correct in thinking that you got your physical issues resolved? If so I'm glad for you.
Thank you for caring reply.
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