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Crohn's Disease
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Posted 7/2/2012 5:00 PM (GMT 0)
I am at an all time low and becoming very depressed with my Crohns Disease.  I have been experiencing for the past2 months awful awful pelvic pain that is almost crippling to where I can barley walk sometimes.  I have pretty much been living off of Vicoden the past 3 weeks.  I dont know what to do anymore.  Went to a new GI on Friday and he wants to order CT scan and another Colonoscopy which I have dont about 2 years ago and the CT I had done 2 weeks ago when i was in the hospital.  Im scared to have them done because not only can I not afford them im afraid it will leave me in a dead end just like my last GI did who basically took my money and did test after test leaving me with no answers.  The pelvic pain is getting so bad and thats all i want is for it to go away!!!  Im so depressed over my health, im 23 years old i have 2 kids and i cant do anything!! Just need to talk to people that can relate.  IS there anyone else out there that is experiencing or has experienced horrible pelvic pain?  I was told that it is from scar tissue from all of the inflamation my crohns has caused :( HELP!!!! cry
Posted 7/2/2012 5:30 PM (GMT 0)
Hi Chelsers. What meds are you taking for your Crohn's?

If there is a lot of scar tissue, the only way to get rid of it is through surgery. I'm not sure you can see scar tissue with colonoscopy or CT - have you been to your OB/Gyn to talk about the pelvic pain? It might be best to schedule a pelvic laparoscopy to see what's going on there.

{{{{HUGS}}}}
Posted 7/2/2012 5:47 PM (GMT 0)
Yes I have been to my OBGYN and he did the laparoscopy and thats who discovered that it was scar tissue.  He removed what was on my overies, but said there was a large amount still in there that my GI would need to take care of. (frustrating)  When I went to my GI he told me that they wouldnt remove any of it until I had a bowel obstruction.  So pretty much lets wait for the situation to get worse before we fix the simple problem.  I am currently taking CIMZIA and have been for about 4 months all of my symptoms seem to be controlled just this really bad pelvic pain.
Posted 7/2/2012 5:54 PM (GMT 0)
Listen, Chelsers, you are the patient and you make the decisions. Your GI may feel that it's better to wait until you have a bowel obstruction, but if you are unable to function in your life because of the scar tissue then it is completely ok for you to go find a colorectal surgeon, or a plastic surgeon, or a gynecological surgeon, and have the scar tissue dealt with. Ask your OB for a recommendation for someone who is good with a knife. It is important to have a good surgeon IMO because scar tissue can return - some people make more scar tissue than others.
Posted 7/2/2012 5:58 PM (GMT 0)
I acually do have a colon and retal specialist no one ever told me he would be the guy to remove it.  Thanks for the information I will definitly give him a call.  I'm just so overwhelmed with hospital bills that I just want to get to the point and cut all the middle men out.  im very surprised that my GI never told me the Colon and Rectal doc would be the one to see.
Posted 7/3/2012 11:10 AM (GMT 0)
How is your vit d and calcium levels, the reason I ask I have the same pain. I started to have that pain two years ago before my diagnosis. I went to chiropractor, physical therapy and the dr. they all said it was my back. so I did all they said. Then I went to a different family dr because my dr resigned,(thank god), lol. He checked my d I was boarder line osteo, I am only 46. the dr put me on mega doses of vit d but it didnt work, I got vit d, calcium with magnesium and zinc, and my pain is minimual now. I also take fish oil. the dr told me  some of the meds chrons patients take delete the vit d and calcium in our bodies. Also because our foods dont digest normally we tend to lack different vitamins.You may want to ask your dr to check your level. I was at 25-30 and a norm from what they say is 40. I understand your pain and I fee lbad for you, good luck.

Post Edited (dusty1999) : 7/3/2012 5:24:13 AM (GMT-6)

Posted 7/4/2012 12:07 AM (GMT 0)
Chelsers, dusty's post reminded me of something really important. Have you had an MRI of the pelvis? Pain in your hip joints can often feel like groin pain, and that made me think that when you write pelvis pain you might mean groin pain.
Posted 7/4/2012 1:46 PM (GMT 0)
I have been having pain on the right side, and all of my tests have been normal. Sometimes I have to take pain meds because the pain is too much. I started physical therapy for my back and the therapist said to start massaging my stomach and it might help break up the scar tissue. I've noticed that my abdomen isn't as tender as it normally is, which I can only attribute to massaging around my scars.
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