I'm a 28 year old female living in NE Pennsylvania. I have been dealing with pain from adhesions lately and am trying to figure out what to do.
Nearly 2 years ago, I had my entire large intestine and rectum removed. They pulled my small intestine down and made a pouch which they attached to my sphincter muscles. This is called a J-pouch. They also gave me a temporary ileostomy (ostomy bag). I had this done because I had been suffering from colitis for more than 10 years and couldn't stand the non-working medications any longer.
This was a huge incision, starting about an inch and a half below my breasts and going all the way down
I had the ileostomy reversed about 3 months later, which was great. About 4 months after that, I went to the ER with a major small bowel obstruction. They had to go back in and open up the entire incision again. They said I had 'tons' of adhesions and that they literally had to untie my small intestines. This time they wrapped my small intestines with some of that film stuff, can't remember which one, to prevent them from attaching again.
I had one other blockage maybe 2 months later but that passed without the need for surgery, just stayed in the hospital for a few days.
Last year, around June or July, I started getting nasty pains in my right side and back. It seemed like Gallbladder problems but it was weird. I had constant pain in addition to the gallbladder 'attacks' from fatty meals. I also felt like something was always pulling.. it hurt more when I moved.
All tests showed no problems.. thank god my surgeon decided to go in anyway. My Gallbladder was horribly infected. It had adhesions attached to it and connecting it to my abdominal wall/other organs. They removed it laproscopically and said they were surprised they didn't have to go with open surgery because of the massive amounts of adhesions.
They said they thought the adhesions had caused my gallbladder to become infected, which scares the heck out of me.. could this happen to other organs?
Well, I was absolutely GREAT for 2 months, loved it.
As usual, complications arose and I started having bile reflux. I'm taking medication for that now and it seems to be getting better, slowly.
About 4 weeks ago I suddenly started feeling pain in the same area. I knew it wasn't possible but I felt as though my infected gallbladder had grown back. Pain when I move around, bend over, sometimes hurts worse when I lie down..
Several doctors were unwilling to help me, told me they hoped it would go away. I think they just wanted ME to go away.
My new doctor, is WONDERFUL and brought me and my boyfriend in to look at my cat scans, xrays..etc. We can see a spot where my intestine is being shoved against my belly button from an adhesion (right where they cut when they go in for laproscopic surgery)bit it isn't being obstructed so I guess its fine for now. He also pointed out a few other adhesions.
He thinks my pain is from adhesions for sure. I was trying not to cry for the entire doctors visit because he kept telling me that he believed me and that of course adhesions can cause pain.
I was hoping he would say that I need to go have them removed but he told me (and I already knew) how counter productive that would be. He told me I should start trying to exercise again, slowly.. and that things should stretch but I will probably always have some pain. He suggested swimming, pilates, yoga and pain meds when it gets very bad.
I realized, AFTER leaving, that I may have caused this myself. I have been doing this exercise, called lunging, where you step forward with one foot and then lower your body to the floor, then back up and repeat with other side. I was doing this 25 times per leg, every other day. Trying to tone my butt:P
I stopped when the pain started. I wonder if just pulled on the adhesions too much and irritated them? Maybe I moved one of the clips inside of me where the gallbladder used to be, or something.. I don't know.
If I don't do ANYTHING for awhile, like a week, I feel better. I overdue it and I'm stuck with a lot of pain again. The percoset kind of takes the edge off but it honestly doesn't do that much for THIS type of pain. I can't take ibuprofen, it makes me sick. My doctor mentioned there is an anti depressant that has been shown to help with some people dealing with adhesion pain.. they also use it for phantom limb pain. Anyone have experience with that here?
I could probably use the anti depressant anyway as I am really digging myself into a pit here. I just feel useless because I can't do anything. I can't hold a job, with no large intestine I am in the bathroom 6-10 times a day on a GOOD day. Plus I'm in pain all the time now. Whose gonna hire that?
I worry I won't be able to have children because of all these adhesions that just won't stop growing and I feel even more useless.
I know that I'm going to be having this depression/anger/frustration/anxiety off and on for a long time as these were very major surgeries. I just don't know whats going to happen with these adhesions.
Reading other posts here isn't very reassuring.. sounds like we can't do anything. It sounds like I'm just going to get worse. I don't want to live like this, why the heck can't my body stop growing these stupid things??
Again, I'm sorry this was so long and thanks for taking the time to read it.
I really hope everyone here has a good day today, as good as you can have, anyway :) Thanks!!
-- Sarah