1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Surgery with m e has anyone got any advice

Posted , 6 users are following.

russ151
russ151

In a bit of a dilemma I have m e and am facing the possibility to have reflux surgery I really have tryed a lot of the medication and have a lot of side effects from the ppi medication one way or the other my consultant did warn me off has anyone any ecperince my consultant wanted to see if my condition improved I can currently walk about 20 mins and some things have improved but have not been able to work work for a year so I don't crash as much but I thinks that only because I know my limits I was quite bad a year ago so I would hate to go through all that again

0 likes, 15 replies

15 Replies

  • sueliz57
    sueliz57 russ151

    Posted

    Hi Russ, I'm interested in this too as my ME has deteriorated at the same time I have been taking PPI medication. Think the surgery is difficult. Hope someone has some info for us.
    • russ151
      russ151 sueliz57

      Posted

      Hi suzie,sorry do you think the ppi medication is exaggerating your m e I have constant reflux this happened when I had a severe infection my m e followed after this I have took up to 60 mg nexium it doesn't stop mine have you been offered surgery?
    • sueliz57
      sueliz57 russ151

      Posted

      I do think the ppi is exaggerating my ME yes and since taking them am developing mild osteoporosis possibly as a result of failing to take up calcium from my food. I haven't been offered surgery no, don't think the consultant was happy with the idea. I too have bad reflux. Will talk to Dr this week, she wants me to reduce medication but unable to. When will you have surgery?
    • russ151
      russ151 sueliz57

      Posted

      Hi my gi surgeon wants to see me back in 5 months I have basically stopped taking the medication the last lot I took I started having migraines I might try the nexium again just to reduce the acidity just a small dose .the gi surgeon I was switched on he told me the risks straight away soon as I said I had m e he also didn't give me to much confidence he said basically even in good hands this surgery can still not stop it completely and you may still need medication and it may only last up too 10 years so it's a real predicament to be in thr reflux for me is just annoying fortunately I don't suffer pain from it but still damage is happing all the time and I am more likely to develop Barrett's esoupgaus I already have scarring from the camera test I would drop your medication down or have you tryed all the ppi medication ?some may work better than others omaprazole worked well for me but again I had developed bad side effects from it gps didn't believe me it's definitely to do with the m e for sure I have seen a few people mention have you seen a gi doc ? I would get referred and they will do the appropriate tests I have had a few and confirmed my sphincter is weakened and I have servere reflux try not to worry Though stress I found just makes things worse
    • sueliz57
      sueliz57 russ151

      Posted

      Hi I saw the GI surgeon about 3 years ago and after two endoscopies he decided I probably didn't have Barretts after all. I've only been on omeprazole but it works like magic, shame it's perhaps making my ME worse so much so I had to give up work. Thanks for the info about the surgery, it doesn't sound good does it? What do we do?!?

      Take care Russ

    • russ151
      russ151 sueliz57

      Posted

      Hi sueliz im sure we will find a solution thanks for sharing your information I am half tempted to try omaprazole again you can add ranitidine to your medication that's what my gi suggested didn't work for me but worth a try no side effects from them and they don't block you absorbing nutrients I don't think take care
    • sueliz57
      sueliz57 russ151

      Posted

      Thanks for that Russ, I'll ask my Dr about that med.
  • artistmike
    artistmike russ151

    Posted

    I have had ME for many years and a few years ago had to have surgery to replace my right hip. I was very worried prior to the surgery that it would make my ME worse but thanks to some great care from the hospital staff and physios afterwards it didn't and the fact that my hip didnt cause me any problems afterwards increased my mobility and improved my general health.

    I suspect that you'll find the same, the improvement in your general health from getting the reflux problem sorted will far outweigh anything else and it will do you a great deal of good in the long run as no doubt having that problem doesn't help your ME at the moment.

    Just make sure the surgeon and staff know about your ME problems and no doubt they'll make the whole process as easy as possible, and good luck ... :-)

    • claire45280
      claire45280 artistmike

      Posted

      Hi Michael, This is very reassuring. I am going through tests to diagnose HyperAldosteronism and may need surgery to  remove an adrenal gland. I will try the medication route first. The thought of going through surgery is quite overwhelming.  It's good to hear something positive from someone eho has been through the experience. Claire.
    • artistmike
      artistmike claire45280

      Posted

      Claire, Yes and bearing in mind that my operation was a long one, as it involved bone grafts as well. I was quite amazed by how well I took it all, in fact I was more ill in the run up to it, through stress, that I was once the operation was done. .. :-)

      The hospital staff were great though and I did spend a bit of time talking about the problem to my surgeon, who ensured I was in a single bed ward afterwards to get the maximum peace and quiet.

      I hope all goes well with yours if you have to have it..   Michael

       

  • Tidsel
    Tidsel russ151

    Posted

    I have had refluxes for years and no medication helped, only I had side effects, some of which quite serious. I then discovered that some refluxes come from Lack of acid, the undigested food pops up with small amounts of acid. I tried to add acid to my food ( you can look that up on the net) but it was too strong, so I got some good digestives instead, and that has cured the problem - as long as I remember to take them, that is..
    • sueliz57
      sueliz57 Tidsel

      Posted

      Hi, what do you mean by good digestives?
    • Tidsel
      Tidsel sueliz57

      Posted

      In my case it means  plant based enzymes. But it varies from one person to another. I also eat many small meals, that helps.

      The only test I know of that shows without a doubt if you have enough or too much acid is the Heidelberg test, expensive and not done in many places. But if you look up the topic of too little acid, a simple homemade test can give you some help whether to go on along that road.

    • sueliz57
      sueliz57 Tidsel

      Posted

      Thanks for that, I'll bear that in mind.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.