Ouch!!!!!!!!!!!!

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andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 4/12/2011 7:18 AM (GMT -6)   
I am having lots of problems with the adhesions tonight, I went bowling and when i got home I went to empty my pouch and then it hit me, was like my intestines kinked and the pain is excruciating, I took my pouch off and jumped in the shower under the hot water to help ease the pain and it helped a little but stayed with me for some time. I also think I may have a partial blockage. I have taken some pain killers but still not the best. My doc says the only thing we can do it more surgery and I seriously can't deal with the thought of that yet again, I will have more chance or more adhesions and when does it ever end. I just feel like crying right now I am so miserable and sore. Thanks for listening I just needed to vent. Hope you are all doing well, take care
Doreen

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/12/2011 7:49 AM (GMT -6)   
So sorry .... no experience with this issue, but it sounds awful. Do you think the bowling started the problem? Hang in.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/12/2011 10:17 AM (GMT -6)   
Doreen can they use the mesh that keeps the adhesions from forming?
Dee
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/12/2011 3:48 PM (GMT -6)   
I sometimes get pain when I pull a muscle in stomach area and feels like everything pulling but usually settles down in a few days. I've done it sneezeing and is agony and first time I did it thought I have a blockage. Could you have pulled a muscle bowling, I would hold on for few days and see if it settles down. Obviously if it gets worse then you may have to get it seen to but hopefully it is just something you did whilst bowling.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/13/2011 3:14 AM (GMT -6)   
Hi guys and thanks for your responses, I don't think its a pulled muscle because I can actually see my stomache move with the small bowel kinking and stretching out and it goes all the way across to my stoma, but I am still postponing going to the doc cause I have been told I will have to have more surgery at some stage to fix it. Dee I haven't heard of any mesh being used on adhesion surgery only for hernias but I could be wrong, I will talk to the surgeon about it, it sure would be nice if they didn't keep forming. I had another episode today so its happening on a more frequent basis. The joys!!!! Take care guys
Doreen

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 4/13/2011 4:46 PM (GMT -6)   
They used some type of mesh or something on J when he had emergent lysis of adhesions 6 mos after his colectomy.I can't remember for sure what it was called. So far 2 years later and no problems.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/13/2011 5:41 PM (GMT -6)   
Doreen,

You need a surgeon seriously trained in adhesiolysis. IF POSSIBLE get this done laporoscopically with a spray in adhesions barrier. If you have to be opened again due to prior open surgeries, then they need to use Seprafilm. There is this massage technique called Clear Passages, but I don't know if FDA approved or not. ALL depends on where your adhesions are. MY whole distal end of my small intestine was scarred directly to the top of my rectum. Surgeon HAD to open me and get his hands right in there. I was a mess. Took him 4 hours. He used Seprafilm and so far so good, but who knows how long, hoping I never have another issue. I was also told for severe adhesions open surgery is safer as the trocars used to inflate the abdomen in laporo adhesiolysis can puncture a small bowel if they go through adhesions that the small bowel are entangled in.

They have GOT to come up with a cure for all this adhesion stuff. It is being worked on. Mark Puder of Children's Hospital is dedicated to the cause. He is now trying some cancer drug on post op patients to see if it lessens adhesions. Previously he had used Celebrex on mice and they had NO adhesions after surgery. BUT he said that on larger animals it did not work, hence the research being done now on larger animals using some cancer drug. Cannot remember the name of it, but I looked it up at the time. Google Mark Puder, M.D. and you may be able to contact him to see where good adhesion docs are. He is very responsive to emails and seems very nice and like he cares though he is not an adhesion doc himself. I had a good adhesion doc at Lahey Clinic in Burlington, MA but he retired. I am hoping I stay obstruction free. I also had pain prior to my lysis of adhesions. I could not eat for 7 months due to these adhesions and the small bowel obstructions they caused. So I can feel for you.

There is this thing called Cine MRI where they can map adhesions, but I think it's only done in Germany????? not real sure.. Good Luck, Rosemary

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/13/2011 11:20 PM (GMT -6)   
Doreen,
I'm so sorry to hear that you're in pain due to adhesions. I've been there many times, and my heart goes out to you. sad Are you getting any output? If you aren't and are vomiting, please go to the Emergency Room, because a full blockage can lead to a perforated bowel, which is very dangerous. I know, I've been there, too. :/

I've had surgery twice for full blockages due to adhesions, and the second time, the surgeon put in the Seprafilm adhesion barrier before closing me up. That was 3 years ago, and so far so good, because I've had no problems since! :-)

Some things that helped me when I used to have partial blockages was drinking coffee, putting a heating pad on my stomach, and doing various stretches. One time, I was desperate and did a handstand while my husband held my feet, and it worked!

You're in my thoughts and prayers. Please keep us posted on how you're doing.

Hugs,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/14/2011 2:02 AM (GMT -6)   
Doreen, i hope things get better for you. yeah, the sepra film is a good thing to try.

Cecilia, i remember when you told us about your handstand lol. sometimes some creativity is needed :)
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/14/2011 8:05 AM (GMT -6)   
Well thank you all very much for your help I had never heard of the seprafilm before so I will definately be looking at where I can get this done cause I really don't want to continue having more surgery for these adhesions. Most of my output is extremely watery more so than usual and felt nausea today but have not vomited but if things continue this way I will get off to the ER as much as I don't want to I know I have to eventually. I live in Australia and I am very happy with my surgeon but he didn't mention that surgery to me last time so I'm not sure if he does it or not but will give him a call and find out. I do know he is one of the best surgeons in this state and keeps up with the modern technology as he also teaches in universities here, so I will do my checking into it and let you all know how I go. Thanks again so very much I appreciate your help, don't know what I would do without you all, oh and Cecilia if I did a handstand now I would break my neck lol.
Take care
Doreen
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