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]firstname.lastname@example.org[/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?
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.
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
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,
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.
Love and hugs,
Hey Jen! No problem, I had my surgeries done by a gyn...he said he'd never seen anything like the mess I had inside me. Lucky me. I have been advised since then by about 7 different surgeons some general surgeons, some gyn to not have anymore unless I get a bowel obstruction...it will just make me worse than I already am. So, I take ms-contin with roxicodone for breakthrough pain. It had given me my life back....I can't keep searching for a cure for which there is none at this point in time. I was told by each of these specialists that my option is pain management. Once I made the decision to do just that...I started to "live" again. Am I in pain? YES. But a level 4-5 sure beats a 9 -10 crying in bed with a heating pad and wishing it was over. Oh, my kids are still young and wonderful loving children...I would give my life for them!! Please let me know how you are ok? My heart goes out to ya..they are soooooo painful it's hard to understand unless you experience them don't ya think? What happened with you if you don't mind my asking? Take care of yourself.....Surgical Disaster Oh, and Happy Easter to you to!!!!
Thanks, Hope you had a happy easter as well.
WoW, youve really been thru alot. Well im just going to list the surgeries ive had an what was done, might be easier just to summarize it that way. Lets see
Age 14 appendectomy done
Age 26 right ovary removed due to cyst and it not responding to meds or the b/c stuff they used to put you on at that time, that was a long time ago, im 49 now.
at that time they removed my bowels out, cause i had endometriosis ALL over the place. I think it thought wow free place to live. I even had my backbone area scraped because it was all over the place. at that time too, they removed adhesions due to the appendectomy surgery and the scarring from the endo
Age 26 (six months after the last surgery) left ovary removed again due to cysts and it was "gone" , eaten lol, by the cyst and scarring and endo. The doc said there wasnt much left of the ovary. At that same time they removed the uterus since i didnt need it anymore anyway. Again, adhesions and endo were once again removed.
Later, when i had pain after many tests they decided to send me to an internist. She came up with the diagnosis of it possibly being more adhesions since i had already had several removed. I was placed on elavil (50 mgs), after a while the pain got a bit to where it was tolerable but was groggy the entire days even tho i took the elavil at night. FLASH FORWARD: also have fibromyalgia and degenerative disc disease (old age talk lol) and am taking pain pills and muscle relaxers for it.
Thanksgiving time was pure hell for me. I started hurting and it just didnt go away even with the meds i usually took for stomach spasms. Doc misdiagnosed me with diverticulitis and after TWO rounds of strong antibiotics nothing helped.
I ended up in the ER on Dec 29th and was admitted to the hospital dehydrated and in severe pain. They didnt know what it could be, but set me up for a visit with a GI doc, once i saw him , set up for a colonoscopy. This was after numerous tests done already prior such as cat scans, mri's, xrays, lower gi tests. EVERYTHING came back normal except the GI doc said my colon was too long and that something seemed to be stretching it at a certain point. His uhm solution to the problem was to remove 3/4 of my colon. SOOO before that even was an option for me, i went back to my primary doc, she sent me to a surgeon who said he thought it was adhesions, but that he saw maybe 3 - 5 if that patients a year with pain this bad. He told me to see a gyn doc (which i have an appt with tomorrow) just in case, or rather to rule out more endo before anything else was done.
The surgeon said he was going to meet with the GI and primary doc and see what they could come up with. He said i might have to go to dallas or san antonio for treatment, but that i was not alone with this disease. The pain is unbearable. You are right in that. I also know tho, that once they go in, they will come back with a vengance, but at this point hon, i need relief even if its for a couple of months.
So , i will post on here tomorrow what the gyn doc says. Shes a good doctor, and has been my gyn for many many years and if i have to have a lapo id rather have HER do it, than the surgeon, thats why i was asking who had done yours.
I'm 49 and dealing with fibro now this, its killing me. Just hope i can get some answers tomorrow.
Please take care,
love and hugs,
Hey Jen, good luck to you! Sorry so late in posting, both kids puked all night long and it was a long night!!! (poor things) Have they thought of the possibility of a partial bowel obstruction due to adhesions? It sure sounds like it could be to me....that would certaily account for the terrible increase in pain. I agree, something should be done, because such an increase in pain usually means something is up. Increase in pain from just adhesions tends to be gradual, but certainly there! I wish you luck ...I didn't even mention my other surgeries...just the 3 in 5 mos as they were the last and worst! Please let me know o.k.? Take care hon, Surg
well stayed away for a bit cause i was resting or trying to lol. Posted a few replies only during these last few days. They gyn doc agreed that it is adhesions and she thinks as well that it could be endometriosis as well but wants to discuss it with the surgeon and wants to back him up in the lapo. She also wants to ask why he wanted to send me to dallas for treatment, wants to know if there is something he saw in the scans that he didnt mention. anyway, typing right now ishard so will get back to you later ,
peace and hugs,
Hey Jen, hope everything turns out o.k. for you...adhesions are awful as is endo(have that too). They only get worse with each surgery and with time as well. Please try to hang in there, and if you just want an ear to vent to/with, you've got it! "Talk" with ya soon...Love Surg
Jen, hope you will get some relief soon. I know how bad adhessions are and with all the other medical problems , the pain is so bad. Here's to a pain relief for ALL! As for me i back to looking for another PMD. Let us know how things r going.....
As someone who has had 16+ operations for various things, including 4 abdominal surgeries, I really understand the frustration and pain you are going through with adhesions. Currently, I have a huge abdominal hernia (repaired twice, re-ripped 3) which I was told can't be repaired unless there is a major bowel obstruction. This is complicated by a mass of adhesions that apparently is wrapped around my intestines.
Probably the cruelest thing ever done to me was following a complete hysterectomy back in 1999. An abdominal specialist decided I shouldn't be on pain meds since they would bind-up the intestines which wouldn't allow them to "work through" the adhesions. That was a real horror show.
Even as recently as last week, these adhesions have been causing abdominal problems, and I just had an intestinal obstruction series of X-rays done. Sometimes it feels like they have taken on a life of their own!
Funny how "adhesions" (or scar tissue, as it is sometimes called) seems to be a bad word among some members of the medical profession. Guess it is one of those nasty little side effects after surgery that isn't mentioned too often.
So hang in there, Jen, and I sure hope you are able to get some relief from this pain!
Sorry to hear about your extensive surgeries, wow. You have had it hard havent you hon? I know, adhesions do take on a life of their own. I guess my frustration and just kind of surrendar showed thru my last post on here. Rather short and to the point. I dont want to give up but this has been going on steadily since thanksgiving and im pretty much worn out physically, and emotionally hon.
So, im asking if you pray or believe in prayers please pray for me as ive just about have had it right now and am feeling pretty low right now.
Thank you for your reply and im so sorry youve gone thru so much hon. I cant imagine the pain you must be going thru. I hope we all get answers and help soon.
Love n hugs,