At Sun, 1 Mar 2009, Donna Johansen wrote:
> Donna, i totally agree! I know I'm one of the very few fortunate ones who has a written confirmed diagnosis of severe intestinal adhesions that were discovered in my colonoscopy. i know it typically takes surgery to confirm it. I have been really disheartened over the last year and a half at how much the doctors I've seen have minimized this condition. I finally went back to the doctor who did the colonoscopy, thinking that because he'd diagnosed the condition, he'd get it. As compassionate as he is, he still is of the belief that adhesions don't cause medical problems if they're not causing complete bowel obstructions. Everyone here knows how wrong that is! Through my PC doctor, I found the surgeon who is doing my surgery on Tuesday. Again, I am so fortunate to have him. Have you tried going to a pain management clinic? i've been going to one in the Minneapolis area that is very good. They have a chronic pelvic pain program. While i haven't joined it yet, i know that there are a number of adhesions sufferers in it, as I was told that by the doctor I see. i haven't joined it only because I'm so hopeful this surgery will work and I won't need to. If it doesn't, I'm the next member! I saw your other post about awareness. I didn't know about the Facebook site. I've never even been on it, but will check it out! We really need to all work together to make the world aware of the horrors of this condition. Take care and I hope you're having a good day! Kris >Kris your comment about the worry of cancer .....As serious as >cancer is, don't you feel it would be better in many ways if we >were actually diagnosed with something that isn't ignored by the >medical establishment? At least then we would be taken seriously >and a solution would be found come hell or high water! I realize >this sounds ignorant but I'm only stating what many of us believe. > >Donna J > >-----Original Message----- >From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On >Behalf Of Kris >Sent: Friday, February 27, 2009 4:32 PM >To: Multiple recipients of list ADHESIONS >Subject: Re: Having a really tough flare-up > >At Fri, 27 Feb 2009, HERB F DIXON wrote: >> No worries! I know exactly what it's like. My mom is alone, so >she really depends on me alot. My oldest son is 32 and has half >time custody of his 2 gorgeous sons, who are 5 and 2 1/2. i spend >alot of time with them. I also have a really demanding job with 35 >employees. I'm single and sometimes it just feels like all i do is >take care of what everyone else needs! I take Zofran for nausea. >Wouldn't you know it that i hadn't gotten the refill because I had >been feeling better. I was coming back from an out of town trip >the day I threw up all over the car. Maybe if I'd had the anti >nausea medication I could have avoided that nightmare. Funny you >should say that about the heating pad. I was just looking for >mine. I think one of my sons took it home! I really appreciate you >responding to me. I was at the brink of tears when I posted my >first message. This truly is the silent disease, isn't it? The >only way i can explain it to anyone is to remind them that Bill >CLinton had to go! > in for surgery after his heart surgery to have scar tissue >removed. Then they kinda get it! However, as we all know, it's >tough to understand unless you live with it. I hope your >father-in-law is feeling better. I'm going to lay on the couch and >read a book. I also find that sitting for very long really makes >it worse for me. It feels like everything is squished and that I >have a huge lump under my ribcage. I'll stay in touch and let you >know how the surgery goes. It's my first one to have adhesions >removed and I hope it's the last! Take care of yourself and thank >you very much again for responding. i needed a sympathetic ear and >you really helped me! Kris >>Hi Kris, I'm sorry it is a rough day for you. Mine has been tough >too. I got up at 4:00 AM because it feels as if a sharp knife >keeps getting thrust deeper and deeper under my ribcage on left >side. I am so lucky that I never throw up, I do get extremely >nauseous though, take 1/2 of a Phenegren ( sp?) It is very hard >when our families and friends do not understand what we go >through. They always say Oh, you look so good. I guess that is why >its called the hidden disease! I do get afraid too, especially >when my pain is more intense, or different, I think it is just >normal. You also only have a few days til you have yet another >surgery. You want to be well so bad you can taste it. So, you need >some me time to relax, grab the heating pad, and take care of you! >I find too that when I am having a bad episode, and things are >going on, and I can't take care of myself,and I'm stressed out, I >end up worse off doubling over with pain, grouchy, short tempered >and then the tears start. ! >You just can't win for losing with ARD. My Mother in Law passed >away in Dec. We also care for my Father in Law and he is sick with >the latest bug going around. I had to go get stuff for him at the >store, then made him Jello, and Puddings because he can hardly >swallow. Standing for periods of time don't help either. I am >taking my own advice, grabbing my heating pad and resting while my >Husband takes him to the Doctor. Sorry Kris, I had planned on >cheering you up, and got caught up about myself. Best of luck with >you on your surgery, You are in my thoughts and prayers. I hope >that this time next week, you will be a new person and PAIN >FREE!!! Cheryl D. >> >>> Date: Fri, 27 Feb 2009 17:42:14 -0600 >>> From: krisl1204@yahoo.com >>> To: adhesions@mail.obgyn.net >>> Subject: Having a really tough flare-up >>> >>> Hi! I just need to vent as I'm going through a really tough >flare-up. >>> As I posted before, I'm having surgery on Tuesday and I cannot >wait. >>> The nausea has been so bad for the past few days. On Wednesday, >I >>> even puked all over in my car as I was driving home. Yesterday >was a >>> little better, but today is really rough again. At least I >haven't >>> gotten sick again. I've got the same pain that all of you go >through >>> in that it's like a vice grip is wrapped around my rib cage on >my >>> right side. I can feel these damn things pulling all the way >down to >>> my navel. It always scares me when these flare ups get so bad. >I >>> don't know about you guys, but I always worry that it's cancer >or >>> something! I have to remind myself of all the tests that don't >show >>> that and remember the other bad flare-ups. I have to say I've >never >>> actually thrown up before. I just need to get through until >Tuesday. I'm so hopeful for good results. >>> It's so hard for family members and friends to understand. I >even >>> just got crabby on the phone with my poor 83 year old mother. I >never >>> do that! Sometimes it's hard to remain cheerful and positive >when you >>> feel so bad in spite of trying hard to. Thanks for listening. I >know >>> you all understand! Take care! Kris >>> >>e.htm