Living with Adhesions

From: Lis: (
Sun Jan 27 22:50:05 2008

Hi, I am seated in my recliner looking like I'm ready to give birth any day now. The sad part of this equation is, it's a normal occurrence in my life. I'm 46 and had a total hysterectomy at 28 because of severe endo and even more severe adhesions. And like so many of you, I've spent the better part of my life looking for that one magic surgery to cure me. I learned to live with the pain a long time ago once I came to realize that no matter how many times somebody went in and "cleaned me up", it wasn't going to take long before I needed another tidy up. And,unless you've got a doctor willing to operate on you over and over again, who's been inside your body and knows the condition beforehand, it's VIRTUALLY IMPOSSIBLE to convince another one to do so. And, though it saddens me to say it,I've come to the conclusion after seven abdominal surgeries,"surgery" really isn't the answer, anyway. As a matter of fact, it's almost a cruel thing we do to ourselves. We have those few months virtually pain free and just when we begin to believe that we've finally had the "magical surgery" or found a doctor who really did know how to fix us, that familiar tug comes back. As the weeks progress, it pulls harder and deeper, and starts to stab again, too. Just when our clothes are beginning to fit better our tummies start to balloon up again. For us,adhesions may hibernate...but they always find a way to wake up.

In my experience which includes four states and the country of New Zealand, the reactions fall between "I don't believe adhesions cause pain or distention unless they are directly responsible for an obstruction. Or, "I don't doubt that adhesions are the root of your condition, but I don't touch them. "Personally, I respect the latter opinion more,though it does nothing for my physical pain, at least my integrity has not been wounded. As a side note, don't bother bringing your previous records, in an attempt to "prove" adhesions exist. Most "new doctors" in my experience, anyway, act as if they're offended by your evidence.

My problem merits a rather unusual scenario,in that I'm petite and normally in good physical condition.(5'1" and around 110 pounds) When I get distended, I look very abnormal. Now, when this first started happening, it seemed like a good thing as I had an external symptom. But, I learned quickly, however, NOT TO visit the ER in this condition as they took one look and automatically assumed I had a bowel obstruction or a tumor. So, I would endure the same tests over and over...and over again. Or even worse, the decision would be made to insert an NG tube to "decompress". (FYI, if you've not had an NG tube and find yourself with the possibility, MAKE SURE you need it before you endure this horrible ordeal!)

So, here I am, grossly distended without relief for three full weeks now. I am scheduled for CT tomorrow after having an obstruction series done last week. Those x-rays were normal,as I said they would be and the CT will be normal, too. (My thoughts were just interrupted by a call from hospital to confirm my appt. and to make sure I could pay the $200.00 registration fee required to have the test performed. Why AM I paying for this to be done again?!) My new doctor had put me on a powerful round of antibiotics. I've been given yet another IBS wonder drug. And, to his credit, he offered pain killer without my having to ask. (But, than again, how effective are the pills when you've got this kind of pain?) He's been gracious and agreed not to admit me into hospital yet since I spent 10 days hospitalized in another state this time last year with no surgery and no diagnosis. Again, I will credit him for that. I do see a bit of compassion in his eyes which somehow makes me feel better, in a weird way.

But,I know what will happen when I have the follow-up exam. My skin will clear up thanks to the antibiotic. I won't get quite as constipated,thanks to Miralax,Dulcolax suppositories and the toast of the town at the moment, Amitiza. Hel'll offer more Vicodin and I'll accept. After all,if somebody in the house has a toothache, it's nice to have on hand.

I'll walk out with an appointment card to remind me to come back in a few weeks to see how I'm getting along. But, I'll have no plans to return. I will probably still be distended with my ever present ghost child. I'll still be in pain. As always, I'll aggravate my adhesions with every move I make.

At Mon, 31 Dec 2007, IAS Admin wrote: >
>From: [] On Behalf Of
>Sent: Monday, December 31, 2007 1:38 PM
>Subject: Re: adhesions and fibromyalgia
>My abdomen looks like a pregnant lady, even though I spend half the time on
>a liquid diet and crackers. My clothes get baggy in the but, but wont
>button. The scales goes up and people say I look like I have lost weight
in >my arms, face, etc.. I dont get it either. My abdomen feels like a rock.
>Going up the stairs I feel like I need to carry my belly. Maternity
clothes >seem to fit the best, isn't that something to feel good about!!! I dont
get >it.

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