Does anyone know any doctors who specialise in managing adhesions?

Hi

After a recent admission to hospital due to awful abdominal pain, and spending a week on morphine, it was deduced that I am having complications from adhesions. I have had five surgeries in my lifetime, of which four were open surgery. I have had key hole surgery to undo adhesions due to three twists in my bowels. I had full open surgery October last year, followed by post op bleeding and two infections, all risk factors for development of adhesions. I have been told that the current plan is for them to do nothing bar pain management. They have said will have flair ups again, I collapsed at work in pain. Been told I have to get each severe flare up assessed just incase bowels obstruct etc, but will not operate if that's not the case and would do as they did this time, which is just boost my medications till I am comfortable enough to manage at home. Now I am someone who doesn't like medications and now on over twenty five pills each day. They have said I may never be pain free again. Is there any one that any of you know who is more proactive than just pain management. Plus I am studying for my PhD at present and medications make studying so hard because they make me drowsy and wooly headed. Any advice, pain management tips etc very welcome. I just don't feel happy with just being medicated and nothing else being done.

Thanks

12 Replies

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  • Someone told me on my blog about a surgeon in Nantes that can help with adhesions. Its about £6,000. I'd love to know if anyone is doing this kind of thing in the uk?

    Have you had any nerve blocks? I had a nerve block (my 3rd) recently, apparently only a third take but its worth a try, as apparently it doesn't aggravate the scare tissue like further surgery can.

    Sending you hugs

    xx

  • Hi

    Many thanks for your reply.

    Excuse my naivety but what is nerve block?

    I understand my surgeons reticence to operate, due to the vicious cycle of possibly producing more, but just leaving it seems unreasonable too.

    Thanks

  • Hi, a nerve block is supposed to block or help block the pain. I suffered pudendal nerve damage from surgery for a prolapse. I'd had a hysterectomy 8 years before for a prolapse without any problems after surgery. I was shocked to have another prolapse, as I thought 'what's to full down' and that's when the nerve was damaged during surgery. I've been told It could have been reversed if done within a week but they wouldn't listen to my cries of pain and have denied any problem.

    I'd lost faith in doctors and it took nearly 4 years to find anyone to help but I have now found doctors that are doing all they can to help me and I totally trust them.

    The doctor I'm seeing now, thinks further surgery may possibly help for a short time but then can cause further adhesions (so agreeing with your surgeon). Although I have read peoples blogs that have been really helped with the surgery Dr Roberts is carrying out in Nantes. If all else fails, it is something I will definitely look into myself.

    I would ask your surgeon if nerve blocks could help you, I know people have nerve blocks for pain in other parts of their body, so it would be wonderful if it's something you could try to see if it helps.

    Good luck

    xx

  • Hi

    Many thanks for your reply and sorry to hear about your difficulties. I am just trying to ascertain what my options are. I am currently waiting for a referral to come in from the Pain Management Team at my local hospital. I have heard mixed reviews of them. The difficulty i have is that to be comfortable I have to take quite a lot of medications,but this only serves to make me feel really foggy headed, which impairs my doctorate studies. Not ideal.

    I will discuss your suggestion with the team.

    I am glad you've finally found a good bunch of doctors!

    Thanks

    :)

  • Hi there I have had something similar to yourself Bex, I finally needed an emergency admission after travelling to a wedding and getting an obstruction on the way. We went to the nearest hospital (one near Manchester) and I had an operation where they removed about a metre of the small bowel and all the adhesions, all on a busy weekend! I have felt better since though and that was in January so each month, I keep my fingers crossed the adhesions are not returning. Like yourself, previously I had had open surgery and an infection after which I think caused bad adhesions, however after this op although extensive surgery (open again) I had a better recovery so I'm just hoping as they got rid of so much bowel and adhesions that might be it.

    So I don't have much advice really except, maybe if it gets like that with you they may operate and it may help. Good luck to you.

  • Hi there

    Sorry to hear about your emergency op. i can empathise with the bowel obstruction...got it hurts! I am glad they got in a dealt with it and that you're now healing well. That is good news. I am not sure what I want them to do. A part of me wishes my bowel had obstructed so that they had gone in and dealt with it. Would have meant short term illness for long-term gain...but I understand why they are reticent to actually go in now. Just means I have to struggle on in the main time...but positive mental attitude and sheer determination (stubborness) will get me through i am sure.. Well with a little bit of help from the pain meds.

    Thanks for your post...much appreciated

    Kind Regards

  • Hi again yes they said to me if it happens again they wait and see if it resolves itself and then if it does within 48hrs they won't operate it's just if it doesn't resolve they will operate quite quickly. Have you tried a low fibre diet, that helps when you have a partial obstruction, I was on that before this op. Not easy though I emphathise. Also amitryptiline is good for the pain. Kind regards

  • Hi again I just also remembered something that might help. Before I had this op (the most recent one) and I was in a similar position with pain etc, the hospital did a test called CT enteroclysis. This wasn't very pleasant (it involves putting liquid through the stomach while doing a CT scan to pick up kinks in the bowel caused by adhesions). It can give them a guide as to whether surgery is needed, maybe that would be helpful for you too.

  • Hi

    Thanks for your message and for all the advice. I am sorry to hear about your experiences. I know adhesions are an inevitable consequence and I can see why they don't want to operate, but it is certainly challenging when you are the one who is left to live life in pain and dyscomfort. My sense is that my adhesions are around my pelvis, bladder and lower bowels,but I have other adhesions from previous operations. i have had times when I a pretty sure my bowel has kinked by a little bit due to pain and extremely loud bowel sounds plus belly distention. I will look into all the options and see about getting reviewed when I can.

    I welcome all of your advice and tips because trying to balance getting on with life with the pain is certainly not the easiest thing.

  • There are some other messages about someone in Leicester

  • Where about are these messages?

  • Hi I am in same boat as you this has left me so disabled I also suffer from diverticulitis and bile salt malabsorption which leaves me incontinence probblem I had open surgery had major complications with this due to infection am diabetic now they have told me am so bad inside they can not operate no more just pain relief in total amount on over 30 Meds a day so fed up.

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