Wanting Surgery Desperately

Hi everyone, now i'm not going to go into all the treatments ive tried and the staggering number of gastroentorologists/gp's ive seen and tests i've had. Needless to say the Gastro's are at a blank and don't know what else to try. I desperately want an ileostomy to give me my life back after its been ruined this last 8 years by "ibs C+D" but the gastro say's it will just make my life worse and she refuses to consider it an option despite the fact i know other people in the same circumstances who DID get a colostomy for the same reasons. Im so at a loss, the nhs feels like its just hit and miss, and you have to get a gastro or surgeon who cares for them to take action but because of my ibs i can't keep travelling far and wide to see surgeons. She wants to send me to uclh to see an apparently good ibs researcher but its all the way in london and i am apprehensive to go because i feel it will just be the same thing all over again.... Try this test that ive already had, try this medication ive already tried, and all the while thinking they might know what it is only to end up telling me to try something else. I am so so fed up and tired and sometimes i feel like jumping off a cliff is the best option to me. Despite knowing how desperate i am i feel like the nhs just doesnt give a toss.

Does anyone have any advice on how i can find a good surgeon or gastro team without travelling all over the country?

8 Replies

  • I know how you feel, I saw my gastro team in clinic last week and he had me in tears. He denied telling me to stop laxatives etc, which really upset me. I had lots of tests like you. He told me to live with it. Again in tears, I said how do I live with the pain etc. I'm no longer seeing him. He told me I've seen every surgeon, but I don't want an operation, I want to get better. He was doing some tests to see if I needed a bag, but because it can turn to constipation or diarrhoea, he said it could turn into a mess, if I get diarrhoea all of a sudden. He calls it Active Ibs and chronic constipation. I'm now never seeing him again and seeing another consultant who will treat me for ibs instead of looking to cut me open. I'm also now going to a pain clinic, which I've asked for, for nearly a year. The treatment given by Drs, is terrible. I feel they are over worked, as they say they are going to do something but don't carry it through. My life has been on hold for years, I'm now 30. I'm not working and I felt the same when telling me to live with it, I wanted to die. I hate the system, but I have got an avenue out of the horrendous cycle I've been in for years and seeing someone new, who may have a fresh view of things. Asking to see someone different - 2nd opinion is ok to do. It's your right.

  • I do sympathise with your position, sometimes it seems that doctors are not listening or at least do not understand what you/we are going through. Surgery for IBD is seen very much as a last resort and most surgeons are reluctant to carry it out and with good reason. I have suffered from acute Crohn's for a couple of years now and had a radical bowel resection a couple of months ago (almost half of my intestines were removed). Whilst I would love to be encouraging and tell you that I am now well, the opposite is true. Before the surgery I was able to get some control from taking steroids (Budesenide) and Imodium but now I am completely intolerant to ALL solid foods and hot drinks. On top of this, I have developed severe headaches, presumably because I am no longer able to keep myself properly hydrated. Furthermore, my GP appears to have completely given up on me - I phoned the surgery yesterday to try to get a prescription for some form of pain relief and the receptionist put the phone down on me. When I called back sometime later and spoke to someone else I was promised that a doctor would phone me back in the afternoon - unsurprisingly, the call never came. This follows an incident last week when, on the request of my surgeon, I took yet another stool sample in to the surgery and they refused to accept it on the grounds that they were unable to process it. There is no going back from surgery and I would suggest that you make sure that all other avenues have been fully exhausted before you take this option. From my own position I now have to accept that not only am I completely unable to take any sustenance whatsoever but that I have to deal with this completely on my own and with only "over the counter" pain remedies to help me. Sorry to sound so negative but I can only speak from personal experience.

  • So sorry to hear you are so poorly.

    I agree with kerrym212, that surgery is drastic.

    I haven't tried the FODMAP diet yet but as part of finding out what my cure may be, I have researched it. The site I have found more information on is kcl.ac.uk/fodmaps. It is Kings College London working on a FODMAP diet, based on English food and akin to the monash FODMAP diet - also a great site. They have a list of UK registered FODMAP trained dieticians. They say how referrals take place and most are via a G.P. If you look at the site you may find a dietician near you. Then you can ask/insist on a referral by your G.P. A lot of people on this site have found the FODMAP diet has controlled their symptoms.

    I am still at the stage of keeping a detailed food diary and eliminating the offenders and I am improving at last.

  • I think the person your doctor wants you to see in London is Dr Anton Emmanuel (Google his name and you can find out about him) and many people think he's God as far as IBS goes so it may be worth taking yet another trip and going to see him.

    The FODMAP diet that matusadona mentions has been a lifesaver for me and gave me results in less than a week. I've never looked back and, apart from a restricted diet, lead a normal life.

    I wish you well.

  • have you tried physical therapy for abdominal pain? this is a new specialty. I would even pay out of pocket if not covered. so effective. above diet suggestions are good too. try diet and exercise before surgery any day!

  • Please, please look at other more natural options first before doing anything as desperate as surgery or indeed jumping off a bridge..I am 40 and have suffered terribly since a child with IBS or spastic colon as it was termed back when i was a kid! I feel your sense of frustration and pain, ive been in A+E several times on morphine for the extreme pain, i cant function properly or look after my kids properly on bad days, i too am scared to travel far, my life has changed beyond belief with this condition when it really hits me :( HOWEVER...after a colonoscopy and other tests I had the all clear bar a few ulcers..so I went down the dietry route I am on the low fodmap diet, it isnt a cure for me but has educated me in the foods that treat my gut badly, so i now avoid as much as possible certain foods..also I take flaxseed and drink lots every day to keep my bowel regular. Im also looking into colon cleansing as have heard very positive things about that and possibly kineisiology..I rarely take any prescription drugs now not even pain killers..Ive gone from max dose pain relief incl oramorph to nothing unless its a really bad day or ive eaten somthing i craved which doesnt like me!! please dont give up hope, take the bull by the horns and look at what YOU can do for YOURSELF..the docs at the end of the day im sorry they dish out meds like sweeties and the meds actually cause you more harm if it is IBS..thst waht you need to know that theres nothing serious going on then look at other ways, more natural ways to help your body get back on track..x

  • Oh and another thing my poor mum had many many bowel ops, they are not a walk in the park, and they are not always a cure.

  • @kerrym212 I've tried fodmaps, ive been tested for SIBO which was clear ive also done other elimination diets and diaries. Just too many things to list.

    @kath_80 I feel your pain and i hope things get sorted for you eventually! I tried getting a second opinion but instead of sending me to see another gastro team, instead my gastro referred me to an ibs researcher to "Talk to me about ways of living with IBS" which is no help considering the amount of research ive done and drs ive seen.

    @sickandsore ive tried MANY alternative therapies most out of my own pocket even though im not working and none have made a blind bit of difference so far, i mean everything from hypnotherapy to aloe vera juice to vitamin b to colloidal silver, im fast running out of options but it seems there is no end to people trying to make money by saying something helps ibs knowing how desperate people are and im not sure i want to keep throwing my money away like that.

    Thank you all for your replies im a bit busy at the moment but i may list my tests and treatments ive tried soon

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