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.
You and I are in the same boat with the adhesions and bowel obstructions and resections. I've been on that merry-go-round for a good 10 years now. In my experience, narcotics were / are the only thing that work for my pain.
You didn't mention what drug is being used for your pain. How long have you used the same medicine? Can you change to a different one? Does the pain back off at all between surgeries? Is your pain treated by a pain specialist or your gastro doc or surgeon? Do you see a pain psychologist?
Tolerance is a normal part of long-term opiate therapy, and changing to a different drug or combination is one strategy used to deal with tolerance issues. A pain management doc should be well-versed with this issue, whereas a surgeon or gastro doc would not.
Thank you for your advice,I forgot to mention I live in Devon in the UK. It seems our problem is world wide.
I usually take a drug call Remedeine Forte. This is a drug containing dihydrocodeine and paracetamol, (you can check on this on the web as I do not think it is used in the USA, if it is, then is under another name).This just manages to deal with the problem during the non acute phase. It is really the acute obstruction phase with the hospital admission for which I am always given morphine routinely by whichever doctor is on duty at the time. When you say "a different drug or combination" can you give an example. I have not seen a pain specialist although I have asked the surgeon about this. When I have had surgery the most recent one was done with an epidural as well as the ordinary anaesthetic and that was a god send post-op.
My problem lies in the admissions where the treatment is "drip & suck" for days, and the unrelieved pain that goes wth it. Thank you once again for taking the time to read about this problem.
Happy to help if at all possible! Since I am in the US, obviously you have some difficulties that I may not have had here regarding who you can see for treatment or what medicines are available.
Oh yes! the "drip & suck" treatment is just torture, isn't it? God save me from the NG tube! Frankly, morphine has never worked well for me with abdominal or orthopedic pain. Have you ever asked for something different while in hospital? Morphine is certainly NOT the only IV pain med on the market: dilaudid, fentanyl, even demoral could be considered along with zofran for the nausea. It's difficult to get out of the mindset that tells you "Doctor is always right" and never question your treatment. When it comes to pain, you have to tell the docs if the medication isn't working. They can't help you if they don't know about it.
My pain doc put me on the fentanyl patch for the chonic pain in between surgeries and admissions. Also had hydrocodone for breakthrough pain and phenergan for the nausea that is so prevalent with bowel adhesions. Some pain docs will only keep increasing your current meds as your tolerance increases. Some will switch to a different long-acting medication every few months to "fool" the body into thinking it's getting more medication. For example, Oxycontin and kadian (another morphine med) are long-acting pain meds used here in the US. Because it is an old and cheap medication, methadone is also used by some pain docs for chronic pain. While it certainly is a fine pain medication, there is a huge stigma attached to it here because it's been used to treat heroin addicts for decades.
Some people have had success in decreasing their pain by using anti-seizure medication like topomax or lyrica. I couldn't tolerate the side-effects, but that's a wholly different class of drugs to at least investigate. They seem to be most effective in people with nerve pain. Also, antidepressants can have a positive effect. Amitryptiline is an old standby for chronic pain sufferers. Like anything else, sometimes it helps, sometimes not. It's all such a **** shoot at times and one can really feel like a guinea pig in the process of finding something that really helps.
In my opinion, you should be under the care of a pain specialist. As you probably already know, you're looking at years and years of dealing with adhesions. Shouldn't you be under the care of an expert to deal with the pain and nausea? I have also been seeing a pain psychologist for the past 2 years. Very skeptical going into it, I discovered it was just as helpful as taking pain meds. Chronic pain invades every area of our lives - not just our bodies. It also doesn't just mess us up personally, but our relationships with family and friends. Therapy with my pain shrink helped me keep my sanity while dealing with the medical maze, the pain, the procedures, and frankly, I think it kept my marriage together. My husband is very supportive, but it's so difficult for him to see me sick and not be able to "fix" me. Feeling helpless is not his strong point. LOL!
The goal of pain management is to help you "manage" your pain and have some kind of quality of life. If you expect there is a magic pill that will make it all go away and restore you to normalcy, you will be drastically disappointed. That is another reason why you need to treat both the physical and the mental aspects of pain.
Since your biggest issue is pain control while in hospital, try to get a pain doc on your case before your next surgery. The pain doc should work together with your surgeon while you are an inpatient to keep you as comfortable as humanly (and humanely!) as possible. And don't forget that surgeons are trained to deal with people who are not in chronic pain. They are not trained to deal with patients who already have opioid tolerances, and are very likely to undermedicate these patients during a pain crisis. THAT is why you need a pain specialist on your side.
Thank you. I will take up all the points with my surgeon and my general practitioner (who can refer me to a pain specialist). I do so agree that the effect on quality of life is huge, also on employment issues. Now, I am gearing up for a barium meal and follow through next Tuesday (Ugh). I will post the outcome of my consultations.
Can you recommend a good pain management doctor? My mom is in constant pain/skin burning and tingling and it is so bad she is thinking of ways to die because she cannot live with this pain anymore. I live in New Jersey and my primary care physician doesn't recommend me to anybody so I am desperate. Please help!
Oh MY!!! I stumbled on this site. My first surgery was at age 9. I have had 21 since. I am 37. I thought I was the only one in pain. I grow adhesions like a flower garden. I have had 13 inches of intestine removed, 4 bowel obstruc, total hysterectomy ect ect all due to abdom adhesions. I spent many years crying cause the MD's would not believe that i was in pain and told me that it was all in my head, I was looking for pain killers, ect cause all my tests came out negative. Adhesions do not show up on x-rays.
When I would pass out on the floor from pain they would take me to the OR and spend 8 hours scraping the adhesions off my gutt only to tell me "oh my you sure produce adhesions" then I am back on the rollar coaster of producing more and the pain is everyday. Some days I can't get outta bed. You get totally depressed, my stomach looks like a road map that needs a tummy tuck from all the incisional hernias and neuromas. My primary would not give me anything but a pat on the back telling me that it will be ok. I feel for everyones pain. if you do not have it you have no clue how terrible it is. I am in New Jersey also and would welcome all advice!!! I need help!!!!!!!!
You and I could be twins! Well, almost - my problems didn't start as early as yours did, but I'm in the same boat. Frankly, I'm amazed your surgeon hasn't sent you to a pain doc long before now. The idea of treating adhesions ("treating" - HA!) is to treat the pain and wait as long as possible before going into surgery again.
If you're stuck with finding a pain doc on your own without a referral from your surgeon, it makes the search more difficult but not impossible. The most important thing you have to do is gather all the surgical reports you can get your hands on to prove your case. Believe me, I understand your frustration since the dam things don't show up on x-rays, CT scans, MRIs or ultrasounds. Been there, done that, wore out the T-shirt.
If you have plenty of money, I understand a doctor in Germany has had great success with severe Adhesion Related Disorder (ARD) patients. He developed a gasless surgical technique that doesn't call for blowing your abdomen up with carbon dioxide that further irritates your innards. Also, since he's in Europe, he has access to a product called Spray Gel that appears to be a much better adhesion barrier than what he have available in the States. Seprafilm is about all we have to work with here, and for me at least, it caused more trouble than it helped.
Another adhesion doc who once operated in the states, I think his name is Dr. Redan, moved to the Caribbean to practice so he could have access to Spray Gel. Of course, my financial situation is such that both those options are out of the question. I understand Spray Gel is hung up in the approval process with the US FDA, so I'm trying to hold on until it's approved.
A quick update on my pain consultation about my adhesions. I managed to get referred to a pain consultant He spoke to me for about 45 minutes. The outcome of this is that he is writing to my GP with a protocol which can be started at home and continued if I need to be admitted to hospital. This consists of starting a painkiller called "Temgesic" which is taken by putting it under the tongue. At the same time to put a Fentanyl patch on. If this combination does not work and/or if the adhesions seriously obstruct the bowel I will then need to go into hospital. On admission the Consultant said he would commence a Fentanyl PCA (not sure what this is, I think it is a dose I can control) and also may prescribe Fentanyl "lollipops" if needed.
This at last gives me some hope that if/when this happens again some effort will be made to make the pain at least bearable.
My girlfriend recently had a bowel resection 3 weeks ago, since then she has had severe pain in her stomach area, we have went to the hospital twice and they found nothing and have had no answers. From what I have read the symptoms sound like adhesions except that from my understanding it takes longer than 3 weeks to develop. She is in excruciating pain on and off with no defined pattern and is sometimes vomiting. Does this sound like it could be adhesions and if so what can and should be done because vicodins and percocets don't seem to be doing the trick at all, any help is greatly appreciated.
hi, (This is going to be quite a long story so please bare with me.)
I live in the Uk(Newcastle Upon Tyne) and I had a burst appendix followed by perritonitis nearly 13 years ago. I've been told that I've now got adhesions because of that.
I've had pain for years and docs always put it down to period cramps untill it had gone on for too long that they decided to open me up with surgery (all other tests had came back negative) They found I had adhesions all over from my liver through to my bowel and down to my womb etc.
I now can not have children naturally because the adhesions have dramatically ruined my fallopian tubes. I'm on serious amounts of morphine(40 - 50mg almost every 4 hours of oramorph aswell as prolonged release morphine tablets - 40mg per day) and its increasing more and more as i grow a tolerance to it. This can't continue this way
I have had a laparoscopy a few times to divide these adhesions but they just seem to grow back around 4-6 months later. My first doctor who did the first surgery gave up straight away and just told me to get on with my life and to get of the morphine - i'm only taking the morphine because i'm in pain and how can i get on with my life in this amount of pain. My second doctor is trying his hardest, he'll do the surgeries 100 times over if need be to help me as much as he can.
Only problem is, I need IVF to have children but the first surgeon I had is also the head of the IVF unit and he's refused to give me IVF till i'm off all morphine related medications but at the same time he's refusing to do anything about the adhesions......I'm stuck!!
I'm only 24 years old and I feel like my life is drastically going down hill, I'm severly depressed and the pain just seems to be getting worse.
If anyone can help, knows of any painkiller that really works and thats stronger than oramorph or also knows of a surgeon or surgery that really helps please let me know......i've hit a brick wall and really need help from somewhere.
This may seem long but it is my first post here. I have had 18 abdominal operations including insertion of J-tube, repairing a bowel perforation, and issues with MRSA. I had mesh put in that I was allergic to which led to about 7 abdominal operations. I have had MRSA 4 times in my gut. I had an abdominal wall constructed due to infection. I have titanium tacks in every rib, and screws in my hips and pubic bone holding this reconstruction together. Despite the last surgery being 4 yrs ago,at times the pain feels like it was yesterday. It is a combo of chronic and acute pain.
Standing, rotating, bending, etc, all make the pain worse. I was able to get some pain control with the help of my surgeons, the ones that did the abdominal work, writing to a pain specialist recommending pain care. This all but eliminated the "its all in your head" syndrome. I have found that finding a pain doc who will treat with just medication has been a battle. I cant get injections due to the MRSA. I go to therapy, group therapy, meditate, etc... It seems like pain control that isn't standard it hard to get. I have been on the same dose 20mg Oxycontin for 3 yrs with Oxycodone for breakthrough. My Dr. said he wont increase it despite it no longer working. I cant find another Dr to help and I feel stuck. There is a difference between having a tolerance to meds and seeking them to get high. I just wish that doctors were not so quick to label people as "drug seeking" when it is true pain relief that I am seeking. When I was in the hospital I needed 4 mg of IV Dilauded every 2-3 hrs to get relief. Sometimes I think there is a chemical in some people that makes them harder to medicate, even surgical anesthesia despite not taking any opiate medication! Until they find that out I feel like doctors are more apt to cover there butts and write a low dose or nothing at all rather than really listen and help with "non-standard" pain relief.
Sorry this was so long but thanks for taking the time to read it.
I have read all the above stories and can only say how sorry I am for you all. I have watched my daughter suffer with this terrible pain for over fifteen years and she is now talking of taking her life because she cant stand it any longer. More surgery next week and this seems to be the answer for all doctors but it makes it worse as you know, she has had her colen removed next her overies, she has had the bowel obstructions and so many laps I lost count, she takes so many drugs she doesn't know where she is half the time. Why can't someone do something? one very unhappy and desparate mother please someone do something!
I am so very sorry to hear about your daughter. Living with this kind of pain 24/7 is really too much for anyone to handle. Has your daughter ever spoken to a pain psychologist? I know it sounds like a waste of time, I felt the same way until I seen one. Just having someone to talk to that understands the pain she is going through will help her alot. He/she will not judge her and will simply listen and offer advice.
I would also like to invite your daughter to join us here in out community. As I said just having someone who suffers like she does to talk with makes a world of difference.
I am very concerned as I know you are too about her wanting to take her own life.
When someone gets to this point they have lost hope that they will ever feel normal again. She really needs someone who understands to talk with. I am sure she talks to you but sometimes it is easier to talk to someone who does not really know you but does fully understand the pain she is going through as they live in the same pain also.
She is lucky to have such a caring parent to support her.
Please have her check out our community. If she would feel more comfortable talking in private I will be more than glad to do that as well.
Please let her know I will keep her in my prayers and that we do care and want to help her in any possible way we can:)
I know your going through alot as well. Dealing with knowing she is so much pain and there is really nothing you can do to help is devastating to you. Your more than welcome here too. We all are here for you as well:)
I read you post and was very moved by it.
It is a long time since I posted because after an age I was referred to a good pain specialist and I believe he has begun to get a grip on the issue of my pain. Never lose hope, life is so precious and every moment spent with loved ones is really special. I really had started to give up while I was waiting for the next hospital admission and more surgery and yet more pain. But at last with a method based both on drug therapy and being able to talk to someone who understands what I am going through it has made a world of difference to me and changed my outlook about the future. The advice from sandee1818 is really good sound advice. You sound like a terrific mum
I had surgery that went wrong 2.5 yrs ago and ever since then have been having this horrible abdominal pain as well, it totally dispupts my life, i can't even plan anything because it could hit me any time. My OB/GYN suspects that I have abdominal adhesions and told me that, if it's really bad to the point where I miss work due to pain, then i need to have a surgery done, during which she'd remove as much scar tissue (adhesions) as possible and then wrap my internal abdominal organs in barrier (I believe it's called SepraFilm???), which is supposed to prevent new adhesions from forming. Has anyone ever had that done? If so, please let me know if these barriers really help, I'm scared to have a surgery if i'm not 100% sure that it won't cause more adhesions.
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.
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....
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!
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.
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.
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!
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
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.
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.
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.
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!
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?
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.
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.
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!
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'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
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.
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.
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
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
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.
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