Adhesion pain

[waem]

Recently I was admitted to hospital for bowel obstruction due to adhesions from the many operations I have had for Crohn's disease and similar adhesion problems.
My problem is that opiate drugs do not work with me. They do not relieve the pain for one moment. I am talking here about 20mg IM injection every 2-4 hours. I am told that following surgery over the years I have developed a tolerance of the drug and that consequently I need stronger doses to control pain. 20 mg is the max dose I have had.
I just do not know what to do. My last admission was 11 days of agony (thankfully with no surgery). I am now home. I absolutely dread the prospect of hospital again and that terrible pain which is never absent.
I really do not believe that I lack courage or am lacking in character. I have faced pain before when in the army, but nothing as bad or as constant.
Is there anything at all that can help. I have told my wife that I do not know if I can face another bout of this. I would greatly appreciate any advice.

[suzofc]

I had a hysterectomy in December of 2010, three weeks later was in the ER with a bowel obstruction from adhesions.  Took what seemed like forever to recover from this 3 months (4 months total with both surgeries).  Ever since summer of 2012 I have had a pain that wasn't constant but has become constant it feels like my insides are being stretched as far as they will go.  Along with this, this spring have had a pain more constant and not stretching more concentrated on my left side mostly.  I went to a Gastro because I also have bowel issues who did a few tests and told me it was anxiety and to eat fiber.  I have gone gluten free which has helped a lot because I was the Gastro said he was going to test me for celiac, after a lot of reading about it, it makes the most since for the bowel issues however the pain is just getting worse.  I have lost 18 pounds and am going to start the whole process over again with a different Gastro was lucky enough to get in to one at University of Michigan.  My question is this whole thing makes me very emotional as the last almost two years have been a night mare how do I convey to her (new doctor) the pain is real?  

Also I sent her all my medical information from first surgery to current and the doctor's notes are appalling to me.  They do not take pain seriously at all and made me seem like a very uncooperative patient.

[wontmylifeback]

Wow my entire adult life has been endo removal of reproductive system only to have 20yrs + of division of adhesions. Tried to od once or twice when family death occured and when detectives needed me to put my pedofile father in jail. Anyway made it through both still bed ridden now but with 2 cerebal annies one they fixed ones a bomb (cant be fixed due to location. **** i just want to contribute to society not leech off it because man can get to he moon but cant help millions of adhesion sufferiers return to some sort of life. It kills your gutt then moves onto needed organs it cripples me and can even drop me to the floor yet opids are thier only answer after not being able to contain or as we beg gone for good. Cant date cant contribute to a relaitionship cant work.em what are we suppost to do besides chew antidepressants and choose pain relife or not. Why cant they hear us.WALK ONE DAY in          my SHOES doctors and maybe you can please       the pace

[Tuckamore]

Hi Dollface,

Please begin your own post. This thread is over three years old and originated by someone else.

You'll obtain better responses if you do so... which is more desireable.

Thanks,
~Tuck

[dollface1972]

I have had a hernia 17 in half lbs and have had 4 other surgeries cuz the permanent stitching they used I was allergic to and stomach kept busting open just had a cat scan I'm in so much pain in fetal position crying a lot my catscan showed a enlarged lymp node but nothing else the nurse said I could have adhesions from so many surgeries vicoden does not work neither does tramadol I am allergic to percocet does anyone have any advice the pain is just to much

[angela23495]

I was just about to have surgery last week when my oncologist put the breaks on. I had 2 surgeries last year for ovarian cancer and now have adhesions because of it. I was finally tired of telling all my doctors about the pain so I thought surgery was the only way to relieve the pain. However, my oncologist said it would do more harm then good. The adhesions start growing back within the first 24 hours!!  I had no clue they grew so fast. So, at the moment, I'm going to try to get some different pain killers. Oxycodone doesn't touch he pain, just makes me dizzy and Ibuprofen, Aleve, and Tylenol....pointless. They recommended Tramadol so I'll see my doctor about getting that.

[lori555]

I have had over15 abdominal surgeries and have terrible adhesions.One surgeon described my abdomin as a big ball of of guled together mess. since any addtional surgery would be life threatening as itn is so difficult for them to see what and where the organs are. I have been put on full disability due to chronic pain and hospitalizations.
Go to a pain management doctor !!!! I have been able to improver my quality of life immensley through the kind and knowlageable care of a wonderful pain management Dr in my area.I only wish that I had been refered years ago as I truely am greatful for th nonjudgemental and caring attiude of this doctor who has made such a dfference in my life. I have good days and bad ,but through his care ther good days are now outweighing the bad.
Good luck and god bless.

[missiles]

I'm a 27 year old female and after a year of being in an out of hospital have now been told I have adhesions,
I have a fixed hip an they have removed my tubes an I'm due another op as theys are effecting my bowel
All this I could handle if it wasn't for the constant pain
Nothing works I've tried every pain killer other than the ones that just knock me out
But I don't understand how I'm ment to do my job or care for my daughter I wouldn't mind if they spaced me out and made the pain but they don''t
I'm I really don't know how -km ment to spend the rest of my days like this its making me depresed and I've lost all my conferdence I'm about to give up m

[hiral1008]

i love u all . i have same problems of reccurent adhesions. i m 34 .let us pray to god for the same
.who knows he hear prayer done by us together.......  

love4 u alllllllllllllllllllllllllllllll

[Lauri808]

My daughter is in the hospital for abdominal pain, nausea, and it hurts when she eats everytime.  The doctors think it is sludge in the bile duct or adhensions from previous surgies.  She had her gallbladder taken out 2 years ago and just started these symtoms in June 2010.  I noticed that walking her helps her pain and eating soft foods.  When they take her blood pressure and the cuffs squezze tightly, the pain starts again.  Maybe when she is stressing she tenses her stomache area and the pain starts.

Does anyone have similar experiences or symptoms.  It is frustrating that she does not have a definate diagnosis.  They do not recommend surgery because she might get more adhesions, plus she has shaunts and if she gets infection it might complicate things.

I would appreciate anyones input! Thank you...

[Tuckamore]

Hi Princessem,

Welcome to the Pain Mangement Forum.

This original post is over three years old. Unfortunately she is no longer an active member. I would like to ask you to begin a new one. You will receive better  and more individualized responses and not be adding on to someone else's thread.

Just click on the green "Post a Question" on top of this page. Thank you so much!

~Tuck

[princessem]

How are you gettin on now???
I had my appendix removed about 6 years ago and from that developed adhesions.
Since then ive had 2 more laporoscopys, 1 they removed one of my fallopian tubes and adhesions, the other just adhesions.
I went to my consultant on thu as they put me on hormone injections to see if that stopped it but it hasnt.
So i am due for another op in 6ish wks so have more adhesions removed but this time they are using a sprayshield to stop the growth of them. Im in the uk too, has your consultant mentioned a shield to you????
also im waiting for an appointment with the pain clinic as ive been on Tramadol, Narproxen and paracetamol for about 2 years now and its not doing a thing now.
Have you got any advice when i see the pain team????? im pretty much stuck in bed or o the sofa most days now as i cant move due to the pain.

[Jaybay]

Sure, just be honest with the new doctor that you want a second opinion.  There's absolutely nothing wrong with that and I'm sure the new doc will appreciate your honesty.  Pay careful attention to the open vs. laparascopic discussion.  I so hate to think you'll end up like me - worse off thanks to an open surgery that could and should have been done laparoscopically. Also, I've had better results using a general surgeon rather than a gyn, so that might be a good option for a second opinion.

[zhenyailyuda]

I've been looking to find another good GYN doctor to get the 2nd opinion.  Someone just referred me to a Dr. whom they've been seeing for a while and trust very much.  I'll definitely call her to see if she takes on new patients and have her examine me and everything.  The only thing is, if I decide to stick with my current Dr., how do I go about that after seeing a new Dr.?  Do I just tell the new Dr. that I'm there to get 2nd opinion and I already have another doctor and intend to stay with my her?

[Jaybay]

Lord have mercy!  Stay away from fiber laxatives!  That is the absolute worst thing for an adhesions patient.  If you absolutely have to, try a water soluble fiber like citrucell and start with very small doses.  I'm in the adhesion nightmare too and I've lived on liquids for over 10 years.  Yeah, it's boring but you get used to it.  My blender and Juiceman Jr. are the most well-used appliances in my kitchen.  LOL!  Stick with outright liquids like smoothies if you have to in order to avoid the worst of the pain and bloating.  Keep a food diary to help determine what foods work better or worse for you.

I would seriously get a second surgical opinion.  There only person better off with a laparotomy vs. laparoscopy with an adhesions patient is the surgeon.  The surgeon gets a nice big field to operate in and it's a lot faster.  Laparoscopy takes more time and finesse and is FAR less likely to leave you with another belly full of adhesions a few weeks post-op.  I've been there and done that; please get that second opinion!

[zhenyailyuda]

I forgot to comment on bowel problems.  The thing is, a lot of easy to digest foods make me bloated, and Fiber or Miralax are worse still, and I'd rather go with 1 day of constipation than and hour with bloating.  When I'm bloated, it's the most horrible pain of all.  That's why I don't know what to eat in my situation.  It's pretty much choosing between bloating and constipation most of the time.

Ok then, till later :)

[zhenyailyuda]

I'm sorry I post so seldom, things get in the way, no spare moments when I'm alone... About laparotomy, because of how badly my former GYN initially screwed up when trying to remove my ovarian cysts during a laparoscopy, my current doctor says there may be a lot of complications that may come up during removal of adhesions if laparoscopy was to be performed, and just pure mess in my abdomen is a huge possibility, so at this point she says that doing a laparotomy would ensure that everything goes well this time, with no emergency laparotomy arising sometime during laparoscopy.  (Phew, that was one long sentense :)).  Also, we're not going to do the surgery just yet if my hysterosalpingogram (which I will have at the end of this month) shows that my tubes are not blocked.  However, if they are blocked, she wants to ensure to take all necessary measures to clear them up as well as possible to ensure possibility of pregnancy.  

I'd been doing very well (with very mild instances of pain) for about 2 weeks before yesterday.  Well, yesterday the pain returned and was so bad I actually had to take a sick day from work.  But I'm greatful for those 2 weeks, it's been beach time here in NY and I was able to enjoy it :)!!!  I'm trying to stay very positive, not lose my faith and trust in God that He only intends the best for us, even when we thinks that nothing could be worse.  My problem is that I have horrible panic attacks, enxiouty, when I'm worried my whole body starts shaking, and lasts forever even after whatever was worrying me turns out well, I'm depressed.  I'd never had any problems such as these before my surgery 2.5 yrs ago, I was one very happy girl, and now, after having to deal with this pain on a daily basis I'm just not the person I used to be.  It does not take much at all to put in a bad mood, make me cry, etc.  I'm absolutely hating this.  Are there any herbal remedies to help calm my enxiouty?

Well,  I'm so happy to have a place where I can just spit all of this out, it's easier that way, I don't want to keep complaining to my husband.

Thank you, everyone :)!!!

[Sarajmt]

Hi!  Glad to see you back.  I hope you stick around.  You seem to be a very smart lady.  That is always wanted and needed here.  Not that we don't already have a whole bunch of smart people, just the more the merrier.

About the constipation, have you tried taking stool softeners?  If you go more that a couple of days without a BM, and you know you're not blocked (this is very important) you might want to try a gentle laxative. I like milk of magnesia and Miralax.  I know Jaybay mentioned some others as well.  And drink lots of water!  Stay away from meat, bread and other high fiber and/or hard to digest food.  Yogurt, smoothies, etc are a little kinder to you.

I don't know what to advise you on the Seprafilm.  As for myself, I won't do it but that's because I've already had more surgeries than you can count on both hands.  It might work for you.   I'm not the one to judge that.  You and your doctor are.

And about the pregnancy, I would want a laparoscopic adhesiolysis prior to getting pregnant.  Has your gyno brought this up?  When you are pregnant, your pain med choices are severely limited.  Is a full blown laparotomy the only way to go?   I'm just a little confused as why you haven't been offered the laparoscope.   If this hasn't been brought up, I'd ask.  It may very well not be an option for you.  Remember I'm just an adhesion patient and not a doctor!!

Personally I wouldn't want to try to get through a pregnancy while in this amount of pain.  Being pregnant is not going to help it!

If only I had a crystal ball and could tell you what would be best.  I don't and I can't.  You need to keep talking to your doctor.

Good luck sweetie.  Keep us updated and PM me anytime if you need to talk, vent, whatever.

((HUGS))
Sara

[zhenyailyuda]

Sorry about not responding for so long.  

I'm very lost right now as to what I should do...  I've been noticing that pretty much every week for about 2 months now i'm getting worse, my pain's more consistent, I started having constipation where all day long for 3 days I would feel that i need to have a bowel movement but simply can't, I miss a lot of work, leave in the middle of work day sometimes simply because I can't even concentrate on what I'm doing.  Strong painkillers (narcotics) don't help the pain, instead making me sick to my stomach, I'm lightly nausiated pretty much all the time, even without painkillers.  I'm obviously not pregnant, so with the way i've been feeling i'm scared that I'm having 1st signs of abstructed bowel, but how do I know if this is really what's happening????  What are the signs of obstructed bowel?  I'm so confused, and depressed :(...  If Seprafilm doesn't help, what does?????  If I'm not to have this surgery, what am I to do?  I don't think I can take this much longer, it's sucking the life out of me.  Maybe there are other effective treatments?  Massages?  But with the abdominal pain that I have I'm not sure how i'll be able to let anyone as much as touch my abdomen, not to mention letting anyone press and push on it...  I'm SOOO sick of being sick!

Thank you very much for your concern and advise.  I'll definitely ask my doctor about her experience with adhesion treatment and use of barriers.  She is the 1 doctor I like very much and can trust, all the other doctors pretty much screwed me over, i really don't want to get dissapointed in her as well.  By the way, I have another question.  My doctor wants to do a hysterosalpingogram on me before considering surgery, and if my felopian tubes are good and are not blocked, she'll prescribe pills for me to make my period 28 days so I can ovulate (it's 35-40 days, which she tells me prevents me from having proper ovulation) and will help me try to get pregnant, and then during C-section will treat adhesions.  But with the pain i have now, how will i be able to go through with the pregnancy?  It scares me to even think about it.

I really appreciate your concern and any advise you can give me.  Thank you very much for helping me get through this. :)  God bless

[Sarajmt]

Listen to Jaybay.  She expresses herself much better than I on this subject.  She is very knowledgeable.

Do not waste your time with doctors who are not educated on adhesions.  And that group does include many surgeons.  As I've said before and I'll say again, my cats know more about adhesions than some doctors!  And it's the truth.   If a doctor every tells you that you don't have adhesions because they don't hurt, etc.. OR that you don't have adhesions but IBS, just pick up your purse, smile sweetly and thank them for their time and WALK OUT!  Pay your bill and never go back!

And as Jaybay said, research all you can on the SepraFilm   and ask nonstop questions until you're satisfied that all the questions have been answered.  I take my husband along as a witness so I'm absolutely certain later what was said.  I've had the experience where the pre op talk didn't match the post op talk.  Never again for this gal!

Good luck to you!  And keep posting and asking questions!
Sara

[Jaybay]

I'm not certain seprafilm is the way to go with such a serious case of adhesions.  Sometimes these barriers actually make more of a mess that eventually makes surgery impossible.  From what I've read, results are better if seprafilm is used very sparingly.  The most important thing is absolutely perfect surgical technique to injure as little tissue as possible.  Inflammation = scar tissue.  If you're allergic to the seprafilm or other barrier materials, the inflammation from the allergic reaction will leave you worse off than before.

My surgeon refuses to use any barriers after a disastrous experience with seprafilm when it first came on the market.  He had a patient with severe adhesions throughout her abdomen, and they both thought separafilm would be the miracle cure.  A month later he had to open her up and found the seprafilm wadded all over her organs in masses of adhesions.  She ended up permanently disabled.

I understand the horror stories are the ones that get our attention and also that they are not the norm in medical practice.  All you can do is educate yourself as much as possible and make the best informed decision you can.  Have a very frank discussion with your surgeon and ask about her success with seprafilm in her other patients.  To be fair to both of you, you need to have this discussion before surgery to avoid unpleasant post-op surprises.  You may want to ask her to have a general surgeon in the OR with you to assist since it sounds like a big job.  A second opinion consult would probably be a good idea too.  It's all in the name of educating yourself and making the right decision for you, and no doctor should have a problem with you doing so.

Years ago when I first began this adhesion journey, I was talking to my general surgeon about my suspicions that adhesions had returned along with endometriosis.  It was funny.  I ended up quizzing him on how well he dealt with endo, and he finally laughed and said, "You know more about it than I do.  How about we get Dr. Ob/gyn to come in?"  LOL!  There's a reason I've stuck with this surgeon all these years.  :-)  Ultimately, that conversation paid off.  The OB/Gyn worked on the endo mess and the general surgeon dealt with everything else including the surprise case of appendicitis that had been bubbling away in there for some time.

Communication is probably one of the most important aspects of the doctor-patient relationship.  I run from docs who refuse to engage in an actual conversation and question-answer session.  They may be the most skilled hands and have the highest IQ of the bunch, but if their egos get in the way of my treatment their smarts aren't going to do me any good.

[zhenyailyuda]

Hi :)

About my husband, it's crossed my mind a few times to teach him a lesson as well :):):)...  In reality though, he's the best husband in the world and, though he doesn't understand me sometimes when it comes to my abdominal pain, he does everything for me, dishes, cleaning, laundry, so it's me who is actually feeling guilty because I can't really do much for him, I can't even go ice skating with him, or play volleyball!!!  It's really frustrating, because we used to do it all the time...  He works a lot and helps me a lot, even before I got sick, so I feel like the least I could do to thank him would be doing fun things we love to do, but I can't!!!!!  >:[  Oh, well, I guess I need to quit complaining, there are people who have got it much worse than me.  

How are you doing with your adhesions?  Do they keep coming back after each surgery you have?  They say that it's best to have a surgery done by a specialist who knows a lot about adhesions and all kinds of barriers, such as SepraFilm, I believe there are a few kinds out there.  Have you ever had any barriers used?  Also, have you ever had adhesions while pregnant?  Do they affect pregnancy?  I'm scared that if I get pregnant prior to the surgery, that pregnancy will be very complicated and cause still more intense pain...

I hope it's not going to be life-long suffering from abdominal pain.

[Sarajmt]

Oh bless your heart!!  You have been through the ringer.  Personally, I don't know any adhesion patients who were warned of the dangers of adhesion developing.  I had never heard of them until after my 3rd C section in 1995.  And boy do I know about them now!!

I wish you the best of luck with your desire to get pregnant.  I do hope your tube aren't compromised by the adhesions.

As for your hubby, take a baseball bat and whop him in the you know where!  When he starts to recover do it again.  That way he'll know what it feels like!!!  I am KIDDING of course.  I don't really mean for you or anyone else to do that.  It is just tempting sometimes!

[zhenyailyuda]

Thank you for the warm welcome :)

What happened to me was I had a simple laparoscopy to get me rid of ovarian cysts, but when in the process my enterior iliac artery was slices it turned into hell.  They had to convert to laporotomy and try to fix it, but did not do a good job, so it opened up again when I was in ICU trying to recover.  They didn't do a CT scan till a few hours later, when I had already lost almost half my blood into my stomach and had a heart attack.  And then they did not take me in for another surgery (laporotomy) for another 7 hrs.  I had a lot of blood in my abdomen.  Just a really bad experience, but I would've appreciated it if they warned me about the risk of forming adhesions after such an experience.  But they did not, so it's been 2+ yrs of going to different specialists trying to figure out what's wrong with me and why I am in such pain all the time.  Only 1 of all the doctors mentioned adhesions.  One would think that any doctor who specializes in abdominal organs (urologist, gastroenterologist, etc.) would have thought of adhesions when I told them my history, but no, none of them did, except for my OB/GYN, she suspected it from the very 1st time I saw her.  Well, now she believes it's time for surgery, but I'm scared to death.  What if that SepraFilm is not strong enough a barrier???  I don't know, just so confused, but also SOOOOOOOOOOOO tired of the constant pain!!!!!!!!  It really affects my life, I come home after 8 hrs at work and cannot do anything.  It's also hard to explain to my husband just how bad the pain, he doesn't completely get it and doesn't understand why I'm constantly tired, week, depressed...  I also need to have hysterosalpingogram done to see if my felopian tubes are fine, as if they are my GYN will try to help me get pregnant, and then will do a caesarian, during which she'll take care of adhesions.  I think I'll have it done next month, and pray to God that this is the case.  But if my felopian tubes are covered in scar tissue, we'll have to do the surgery right away....

[Sarajmt]

Welcome to the Pain Management forum.  I'm sorry you find yourself here but I'm glad you found us.  You can get some wonderful support and advice here.

I too suffer from adhesions.  I've had several surgeries to loosen them.  I've not had the Seprafilm but I have heard of it.  If you do a web search, there is a lot of information on it.

You may also wish to check out www.adhesions.org.  There is a lot of good information on this over there.  You may want to try this one as well.http://www.adhesiolysis.org/

This surgery may be exactly what you need.  It may give you permanet pain relief.  But speaking strictly for myself, I will not do another surgery unless my life is in immediate peril.  But this is a personal decision that each patient must make on her own.

I've battled adhesions for 15 years.  PLEASE feel free to send me a personal message it you have any questions or just need to vent.  Along with everyone else on the forum, I'm always willing to support a fellow pain and adhesion sufferer.