Tell Us Your Story
Thursday, August 7, 2008 6 commentsI would like to invite everyone reading this blog to share their personal experiences with chronic pelvic pain, chronic illness, adhesion related disorder, ectopic pregnancies, and other related issues. I truly believe that a big part of healing comes from finding people who share our experiences. That way, we know we are not alone!
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At 38, I thought I had it all; a great job with a fabulous college, married to my soulmate; no kids but, I accepted that part. Nice car, just everything was "perfect", until--- ARD: Adhesion Related Diseases and Disorders. At 20, I had my first of 39 surgeries, an ectopic pregnancy. To make a long story short (lol) I am now 43 on perm disability and was given 10 years to live, 3 years ago. I take copious amounts of meds just to function, as do most people with ARD. We are not alone, I was granted a disability on 9/11/2002, I had already had 7 "life threatening" surgeries that year, as I am on a "none surgical" list, as there is nothing else to do, but repair the bowel obstructions, although I have a "mechanical" obstruction (an adhesion pulled a loop of intestine to a "triangle" and they will not do surgery until it is completely obstructed and it is a life threatening situation. I wait for a cure daily. We are not alone.
Samantha,
Thank you so much for sharing your story. I am so sorry that you have been living with this for so long. Wow…39 surgeries in 20 years…I can’t even imagine!
Although I would never wish this disorder on anyone, I have learned so much from stories like yours. I stay away from “surgery happy” doctors, promising cures. Also, I now know that I have to be my number one health advocate. I will only have surgery if it is an emergency, or a much better and proven method to remove adhesions.
Again, thank you for sharing your story! I am here if you want to talk. You are in my thoughts and prayers.
Rachel
Hi my name is Sarah, I'm 28 years old. I had my entire large intestine and rectum removed about 2 years ago due to ulcerative colitis. They pulled my small intestine down and attached it, creating a pouch to act in place of my large intestine. (called a 'j-pouch' ) This was a huge incision from two and a half inches above my belly button to my groin.
They gave me an ileostomy at the same time (temporary ostomy bag), to give my intestines time to heal, which was reversed about 3 months later.
Those two open surgeries started me on the terrible path to ARD. A few months later my small intestine became totally obstructed and I went to the ER. I needed emergency surgery and they reopened my entire incision to untie all my guts.. Obviously another open surgery only made things worse.
So far, I have had seven surgeries. Five of them have been directly related to adhesions. I am very thankful that they have all been laparoscopic surgeries. I have been hospitalized dozens of times with partial obstructions and have really had no quality of life for quite awhile.
I had such a difficult time finding a doctor who was willing to help me with surgery. They all gave me the usual list of reasons we ARD sufferers are all too sick of hearing:
My problem wasn't an 'emergency' so there was no reason to do surgery. (Never mind the fact that I was coming in every few weeks with partial obstructions that required having an NG tube stuck down my nose to help clear it),
Surgery causes more adhesions so it would be counter-productive,
And.. the one that bothers me the most, "Adhesions don't cause pain".
These doctors have obviously never had to deal with adhesions personally, and certainly never with chronic pain. I spent 5 months sitting in a lounge chair, (I am still unable to lie down) hardly able to move, due to pain from adhesions. I had to be on a liquid diet for nearly the entire time, could eat no vegetables or anything that might produce the slightest amount of gas and it was a fight everyday just to be able to go to the bathroom.
Having no large intestine made everything even worse, when I get obstructed and can't keep fluids down I get dehydrated much faster than a person with a 'normal' bowel. It was also very depressing.. the doctors were telling me there was nothing wrong with me when I knew my intestines were knotted up and I was pretty sure I knew exactly where the problem was. But no one would listen to me because so many doctors have that 'adhesions don't cause pain' thing stuck in their head.
I was lucky enough to have found a surgeon a few months ago who was willing to perform the surgery I needed. I became even more ill and ended up in that emergency situation after all. My surgeon did the surgery about 10 days sooner than planned. He did it laparoscopically, it took about three and a half hours.
He said he was amazed that my body was able to function at all, everything was so twisted up inside of me. I had a very big kink in my intestine right where I thought it was, even though all the other doctors told me there was nothing wrong with me.
It was a very difficult surgery to recover from which surprised me since it was laparoscopic, but so much of my body had been affected by the adhesions.
He did another minor laparoscopic surgery a month after that to remove a few that had grown back and said everything looked good. He uses a wide variety of sprays and gels to help keep the organs from adhering. It's no cure but it's been the best thing for me so far. I will, unfortunately, always have to go back for surgery. These things are always going to come back, I can only hope, like everyone else, that they either come back in smaller numbers or come back more slowly.
I have a new problem now, nerve damage in my back that led to severe muscle tension and spasms. It probably started from the curve in my back but it got very bad from tension, pain, stress, and having to strain (bathroom) for 7 months, So now I have another horribly painful, chronic problem to deal with thanks to the adhesions. I have been on near bed-rest on orders from my doctor and I know that will only make the adhesions worse.
I'm so glad there are other folks like me who are trying to push to get the care they need. While I doubt there will be a real 'cure' during my lifetime, maybe we can at least raise awareness and help others.. I was not told that adhesions could cause this large of a problem before my first surgery and I should have been. I want doctors to make their patients aware of the problem but they need to admit there IS a problem first.
Best of luck to you all, feel as good as you can today!
- Sarah
i was diagnosed with ectopic pregnancy 2 days ago and had surgery. During surgery, the gynae saw my adhesion of my ovary to the surroundings, he removed the adhesion.
I am feeling really down and out and very alone in this.
http://ivfsingapore.blogspot.com
On December 12, 2007 I had an ovarian torsion that landed me in the E.R. I had two dermoid cysts and one had twisted my ovary and cut off the blood flow. I had my right ovary removed and most of my left ovary. Recovery was fine but three months into my recovery the pain was different and kept getting worse. I have been on a long and horrible journey since then. I feel basically alone and some days I feel like just dying. I am 30 years old and i live in pain every day. So many Doctors say so many different things. I have a dermoid growing on my remaining ovary so eventually that will have to be removed. It is a waiting game now....waiting to be in menapouse even before my mom. I know adhesions are causing all this pain but the Doctors just keep handing me off to other Doctors. My life changed on December 12, 2007 and I don't know if it will ever get better. I always find comfort in others stories so thank you.
I was married December 17th, 2004, I found out I was pregnant the day before my birthday January 26th. My baby was conceived on my wedding night. In march when I was over 12 weeks along. I had an ultra sound done and I found out that I had an ectopic pregnany. I was so heart broken and I started in the office when the doctor told me. My husband started crying to. My baby was healthy and normal, and yet I couldn't keep him. I had surgery the next day and they removed my tube. They told me that I was lucky that my tube didn't burst, because I was so far along. Still to this day I have not gotten pregnant. The doctor told me that I have 50% less chance of getting pregnant because I have only one tube. Wow 4 years later and no baby. We haven't been trying, but we also haven't been trying to prevent it either. So I am going on 5 years of marriage everybody asks me when am I going to have a baby. I tell them I am not ready, I want to finish school get my career going. But I know deep down that it is not true. Regardless of how hard it would be to have a kid and school and work. I really really want one. Everybody has a kid, but me. ; ( I don't like it when mothers day comes around. I may not be a mom, but I should have been one, until my baby was taken from me. And yet I can't bring myself to telling my husband how I feel. I am a mom. My sister has 3 kids and lost one as a stillborn. And I felt sorry for her when it happened, but when someone asks her how many kids she has she says 4. So even though I don't have any kids, why am I not allowed to say that I have 1 kid. And why can't I be told Happy Mothers day. Or at least acknowledge that I was pregnany and it was not a miscarriage. My baby was a miscarriage. My baby was healthy and just didn't make it down where he should have been. Well I guess you can see that I am not over it. No I don't cry everyday, but every once in a great while I think about him and I see his ultrasound picture and it makes me cry. I find comfort in readin other stories of peeople who are going through this same thing or who have gone through it. And feel the same way I do. I will never be over this, but I have been living my life happily, and I just hope that one of these days I will finally have a baby that I can hold in my arms. Thank you for listening.