Anyone dealt with this?

[tinah]

I just found this site this evening. I will tell you a little about my journey. I am a 56 yr old female. I have an ileostomy, total colectomy, rectum/anus removed also. How's that for getting to know someone? My struggles began in my 20's in the 80's. First surgery for an obstruction/crohns diagnosis was in 1986. 9 surgeries later, most for obstructions due to adhesions, here I am. My last surgery was in 1995 (for bowel issues).
I am now experiencing a very odd problem and hoping for some feedback. I returned home tonight from my 3rd er visit in 4 days. About 2 weeks ago I began having a very strong sensation that I needed to have diahrrea. This was sudden and strong. So much so that I had to sit on the potty even though I knew nothing could happen. My bladder is now feeling like I have to empty all the time. The bowel issue is painful like I have already had crohns type bowel movements for days on end. It completely goes away if I stay in bed. Within 10 minutes of being up, all symptoms are back. I have shooting pains down both legs sometimes too. I had spinal fusion 1996 L5-S1. I have had a small bowel follow through test, ct of abdomen, bladder/urine tests, blood work-all normal. My primary doc sent me to the ER tonight because she thought I should be admitted and get an mri of the spine. They basically laughed and sent me home. I am feeling desperate. Has anyone dealt with something like this after bowel surgery/resection? I apologize for the long post.

 

[Lucinda]

Wow. I have no answers for you as I haven't had surgery. But I hope someone here does. You have been through so much already. You poor thing. Hugs and prayers to you. Good luck.

 

[PattyLynn]

Oh my gosh! I felt that way after my ileostomy but that was 12 years ago and I haven't felt the urge to sit on the toilet since. I can't even imagine how you must be feeling. I really can't help but I would suggest you march right back to your doctor, explain what happened at the hospital and have her take action! Is there another hospital you can go to? You know your body better than anyone and if you know something is not right, you keep pushing until someone does something!! Good luck - I will say a prayer for you.
Please keep us posted!
Hugs,
Trish
:hug:

 

[Angrybird]

Hello and welcome to the forum, I have not had this type of surgery either so cannot advise. If you have not already please do check out our stome sub forum as the chaps here may be able to give you some assistance/advice: http://www.crohnsforum.com/forumdisplay.php?f=46.

AB
xx

 

[David]

Hi Tinah,

I don't have any answers either but wanted to welcome you to the community. I hope someone is able to give you some guidance!

*hugs*

 

[jvc7477]

Tinah, I too have had urges to go sit on the toilet with an almost overwhelming urge to have a bowel movement. I had my ilieostomy since 1988. I've had these symptoms off and on for 4 or 5 years. I would have so much pain that neither sitting or laying down would help. What I found that helped me was to go the er and get a pain shot of either demerol or morphine. Seems like the shots relaxed me enough to let the cysts go away but i don't think they ever really went away just from relaxing they got sistuated to where they weren't pressing against anything
Finally saw a surgeon and Ct scan found a cyst well in fact 3 of them. I had surgery for that this past June. It got so badf that i could hardly even urinate. I had to sit on the toilet just to pee because the pain was so bad i couldn't stand. After the surgery the surgeon told me i had 3 cysts, all filled with mucus and dried blood which he thought was left over from my previous surgeries, the last in 1992. Now after 2 months recovery i've had no problems. I know what you are going through.

 

[tinah]

I have now had a spine mri to rule out cauda equina. They only saw minor issues, such as a very small cyst on my spine, and changes due to the back surgery. Nothing that looked as though it could cause my symptoms. It has subsided quite a bit now, but still comes back if I am on my feet too long. My doctor said last week that she was going to say it was referred pain from my back, not intestinal pain at all. I'm glad she knows how I feel. I know what it feels like to have an urgent bowel movement! Doesn't feel like back pain. I am going to see a neurosurgeon now. Thabks for the replies.

 

[PattyLynn]

Good luck with the neurosurgeon. Hopefully they can get this figured out soon. Take care and keep us posted.
Trish

 

[KazT17]

Have you read about pudendal nerve problems some illeostomists have ? Maybe this could be your problem.

Kaz xxx

 

[maria]

I have the urge to use the restroom #2 and I do go. I've had my ileostomy for a year now. it's weird. Also I pass gas too.