Re: Amy/Megan

From: Amy (adkramer@mediaone.net)
Tue Jul 10 22:48:03 2001


Marianne, they also did an ultrasound, which didn't show anything. She had most of her colon removed last year, and had a sigmoidoscopy in May, so I don't think that's necessary right now. She has Crohns Disease, which is a form of inflammatory bowel disease (IBD), so IBS isn't an issue, either (I wish it was just IBS!) The purpose of hte Upper GI was to see if the adhesions were causing any narrowings or obstructions to her intestines. Her "ostomy" is actually an ileostomy.. she had that surgery in 1998. Originally it was done as a "temporary" measure to allow her colon to rest and heal, but the Crohns progressed even further and they finally had to remove it. Basically an ileostomy is an opening in the abdominal wall which they attach the small intestine to and it empties into a bag. So, the adhesions are just one more thing we are dealing with on top of the Crohns and complications of that through the years; she was diagnosed at age 9 and has really been through the ringer. At least with the Crohns there are different meds etc. to try. For now, there is no indication that her Crohns is flaring, bloodwork is fine and the Upper GI did not show any signs ofactive disease. THe sigmoidoscopy did show inflammation in her rectum, but since she is not "connected," that is really not causing any problems.

So, surgeon and GI both seem pretty sure all these current problems are caused by adhesions.. but again, are reluctant to operate unless they cause a specific blockage in her intestines. Her last surgery for adhesions was March 2000, and was NINE hours long; her intestines were basically welded together in one massive adhesion. Surgeon feels certain that they are probably in about the same shape, but is afraid to make things worse by going in to clean them up. They operated on the adhesions last time because they caused a bowel obstruction.

Hope that clarifies things a bit... I know most of the folks here are adhesion sufferers after GYN surgeries, or so I have gathered.. so the IBD/Crohns piece of Megan's illness may not be as familiar..

At Tue, 10 Jul 2001, marianne bolding wrote: >
>I thought they were doing more than an upper GI...I'm
>actually disappointed. What about the colonoscopy,
>there are so many problems a simple upper GI won't
>find. This is the test where she drank the barium?
>Has anyone checked into IBS (D), Does she vomit, or
>diarrhea...or both? I hope she hasn't lost too much
>weight, does she faint ever? another symptom to watch
>for with certain diseases. And if adhesions are
>really bad...an upper GI will not allow full
>visibility. I thought I'd have gained some weight at
>my drs. appt. today. I actually lost more. I'm a
>melting pot of 99. That's 11 lbs. gone. Yet, the
>OBGYN dr has done his part of detaching the ovary from
>the intestine. However, he neglected to (since I was
>already open and he had the camera inside) do a full
>check of the abdomen area. He's just referred me to
>see a gastroinologist, too check. I'm dissapointed to
>find this out. Why wouldn't he have fully checked all
>he could within his realm of medical capability?
>That's how I feel for Megan...why just a GI? Mostly,
>right now...since you haven't talked to the dr.
>personally, yet...I shouldn't pass judgement. Maybe
>he has more to say than what the nurses are telling
>you he does. I'll wait for the update. I looked up
>ostomy....what is it? colon, ileum,...colonostomy is
>to check for cancer? I'd like to read my medical
>reference book to see if it has any suggestions for
>foods to try or avoid. If you'd like. I wish I could
>do something for both of you. Love, Marianne--- Amy
><adkramer@mediaone.net> wrote:
>> Well, here's the scoop.
>>
>> Upper GI showed NOTHING significant. barium went
>> through fine. no
>> obvious obstructions or strictures. So, adhesions
>> may be causing pain,
>> but they are not causing enough "trouble" to warrant
>> surgery apparently.
>> I haven't talked to the surgeon yet.. but that is
>> what I gathered from
>> talking to the nurses. I missed him when he made
>> rounds tonight,
>> dammit. I hope to catch him tomorrow and have a
>> long talk. My biggest
>> concern right now is, whether or not the tests are
>> showing an
>> obstruction caused by the adhesions, the fact is SHE
>> CANNOT EAT. This
>> is the 3rd time since April now that when advanced
>> beyond a soft diet,
>> her ostomy stops outputting and her pain is back.
>> Yet, air still gets
>> through, and eventually after bowel rest the ostomy
>> starts working
>> again. What's the answer, keep her on TPN or a soft
>> diet INDEFINITELY??
>> IS that any way for her to live?? I realize the
>> surgeon is afraid he
>> will make things WORSE by operating, and that is a
>> possibility.. but
>> hell shouldn't we just take that chance????
>>
>> Very frustrated and discouraged here. I hope to
>> have answers to these
>> concerns tomorrow. Megan is doing better than I am,
>> I think. I expect
>> she'll be in a few more days, advanced her diet
>> slowly again and bring
>> in the pain management specialist again to consult.
>>
>> http://www.adhesions.org/forums/listcmds.htm


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