Pelvic/Back Pain following Appendectomy

jmatero · 04-11-2004, 09:29 AM

I'm really at the end of my rope. 36 year old male with no health problems before appenedectomy.

Seriously.... the end of my rope.

I've posted before but now a recap:

just over a year ago, I had a traditional appendectomy for a perforated appendix. A week after the surgery, the first pain started: TERRIBLE pain just before a bowel movement... it feels like something is blocked and you are trying to pass a bowling ball... then after the pain, the stools appear normal and the pain subsides. I had multiple CAT scans, MRIs, colonoscopy... all normal. I still get the pain to this day. Then about 6 months later, the hell started. I have chronic pain at the site of the scar.... it radiates down into my groin. I also have pain in my hips/pelvis when I turn/twist my torso... and getting up and down from sitting is painfull. Now, I am unable to sleep because of intense pain in my pelvis and lower back.... particularly when I fall asleep on my side or stomach.

NOW... I've been to the general doc, 2 gastroenterologists and now a neurologist. The gastros did colonoscopy, endoscopy, MRIs, CAT scans and they all appeared normal with the only notes from the radiologist saying there was a dialation in the loops of the small intestine with no obvious cause. My Dr. doesn't seem to want to persue this saying to me "we've done all the tests... I can only suggest a follow up colonoscapy in a year."

Now I'm seeing a neurologist... she heard me out and prescribed Neurontin first... it did NOTHING for the pain. She has also prescribed a number of sleeping pills but they don't help. Now I'm trying Elavil which I thought might have given a hint of relief but that seems to have stopped too.

I'm seriously ready to give up. The pain is really bad and I'm now feeling I'll have to just live with it. However, my Neurologist mentioned she was thinking "adhesions"..... I never heard of them but found this site and can't help but wonder if this might be the problem?

Is ANYONE out there experiencing the same thing as me? ANYONE? Am I just NUTS? I live in Westchester County NY and work in Fairfield County CT..... are there any Dr's there who specialize in this? Please, if anyone can help, feel free to contact me directly..... [email]jmatero@mac.com[/email]. I'm tired and frustrated and as far as doctors are concerned, if it doesn't show up on an MRI and your blood comes back normal, you must be a hypochondriac. Please, anybody, can you help?

Thanks for your time

John

Jenetti · 04-11-2004, 02:27 PM

OHHHH no JOHN, Adhesions are VERY REAL and EXTREMELY PAINFUL!!
your symptoms are the same that ive been going thru. Ive had adhesions removed twice before and i think this is what is causing the pain again. Ive had 3 surgeries, plus endometriosis. Ive had MRI's, cat scans, xrays, GI doc visits, surgeon visit, colonscopy, ALL NORMAL. Now hes sending me to my gyn doc to check to see if its the adhesions. My bowels are KILLING me especially after i eat and have to have a BM. I am "surviving" right now on smoothies, cream of wheat, oatmeal, soy protein mixed in with fruit in the blender till its all creamy just to get a bit of relief. I ended up in the hospital Dec 29th because of the extreme pain and because i was dehydrated from not eating or drinking simply because it HURT to do so.
Adhesions are NOT to be taken lightly either. They can cause obstructions in the bowel and can cause severe damage. Don't want to scare you, but, keep on top of it. They can do a lapo surgery to remove the adhesions. Im in the process of having that done SOON i hope. Thing is docs are discussing amongst themselves the best way to go about it. Sometimes the adhesions stick to organs and can be hard to remove and thats where the tricky part comes in. Sometimes, they cant seperate them and will only remove those adhesions they can. Which means, sometimes they can help, sometimes they cant.In my case, since the adhesions are older they told me they would do what they could, but to be prepared in case they might NOT be able to remove all of them in which case, i would have to "live" with it. Im already on pain pills for fibromyalgia so that helps a bit with the pain from the adhesions, but, let me tell ya, not even the pain pills can take the whole pain away. Please keep us posted and i wish you the best of luck hon.
Jen

surgicaldisaster · 04-11-2004, 05:19 PM

John, before I even got to the part where you mentioned adhesions I was saying adhesions. They will not show up on any tests. I had 3 surgeries in 5 mos all due to adhesions. It's called adhesion related disease(ARD), and the problem is the more surgery you have the more you get. I was told NO MORE SURGERY unless I end up with a bowel obstruction. Yes, they are painful as h*&&. And yes, I too was "at the end of my rope", sitting at dinner crying, saying I don't care if I wake up or not, what's another day of pain going to do for me? I finally relented and went to pain management and have my life back. There is not shot or physical therapy that takes adhesions away. I tried accupuncture to no avail. My meds. gave me my life back. Not trying to bring ya down, just be careful about letting them "clean ya out" too much...as you can end up with even more of them. There was a study done not too long ago in the U.K. (the first of its kind) on adhesions and they found that adhesions themselves have nerves in them thereby being able to cause pain in and of themselves, not just by yanking and attaching to organs in the body. So, yes it's a terrible disease we have, but if you look up adhesion related disease on the net you will find more info than you can believe. They are trying to find ways to stop them...gels, etc., but even some of these have been pulled recently as they found they actually made things worse. It's kinda like cancer, we have to hope they make strides with this and that someday they will be able to help us. Hang in there and if I can answer anything for you, I will try! Surgical Disaster

Jenetti · 04-11-2004, 06:55 PM

Well said SD
Yup they have found they contain nerves in them, as well as veins connecting them to the organs, (making them part of the organ ya think??) makes me wonder. Yes ive heard about those gels and nets they stick in there and supposedly dissolve after several weeks, but not sure how well that works either. Its been quite a while since ive had work done on the adhesions, and my worst fear is that oh yea, the more you clean them out the more they create. At this point tho, for me im looking for relief simply because i think what i had in dec must have been some mild obstruction. I was given fluids and nothing by mouth for a good while and they sent me home still in pain.
John, i feel for ya hon. We understand, trust us we do understand the horrible pain of adhesions.
Oh SD, let me ask you since you seem to know more about it, are gyn docs better prepared to do the surgeries or who did yours? Sorry but i dont know if youre a guy or gal,

Jen

Jenetti · 04-11-2004, 07:08 PM

Ok Surgical Disaster,

Sorry , just remembered you are a female, sorry, fibro fog i guess. May i ask who did your adhesion removals? Surgeon or gyn doc? Also i read where you said you went to pain management and are on meds for it, can you tell me what meds they are on?? Please let me know if im being too nosey, just that id rather try meds or anything other than having to go thru another surgery to remove the adhesions. Thanks again and hope you had a great Easter hon.
I know you have kids, did you have a good time with them?
I have a 27, yr old son who lives 3 hours away from me, so no more little ones to have fun with, lol.
Take care,
Love and hugs,
Jen