Wanting Surgery Desperately: Hi everyone, now i... - IBS Network

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Wanting Surgery Desperately

crimsonknight3
crimsonknight3

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?

19 Replies
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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.

graeme1976
graeme1976 in reply to kath_80

Hello I know it’s been 6 years since your post

But I need to ask if you got the surgery

I have suffered with ibs for many years like yourself and I have had enough

I have just seen my consultant yesterday to the shock of him saying he refuses to do the surgery after he said he would and wants me to get a second opinion I am devastated I was all ready for the surgery

I had a resection for Diverticulitis in February but it as not been successful left me with constipated and reliant on many laxatives I am in lots of pain it’s been 4 months of hell

I was given the option of the bag or the resection and was told that if it was not successful I could have the bag

Can anyone give me some advise

I haven't been lucky enough yet. My gastro just recently FINALLY agreed to find a surgeon willing to talk to me but it has literally taken all of this time and she is still telling me I shouldn't get my hopes up and should think about going private. I would never willing choose resection anyway, if the surgeon told me resection or nothing I would rather choose nothing.

From my point of view it feels like things have to get PRETTY serious before the nhs will consider something. I wish you luck and all I can see is that you really truly have to show them how you feel, not just in words but in true emotion. After all this time it took me crying and telling the gastro I see myself with no future to get her to try and find me a surgeon to talk to. (However this is the same gastro who got someone to go back over all my biopsies that showed "chronic inflammation and scarring" at the time they were first examined, and then decided they were all normal -_-)

I really wished I gone for the colostomy bag he did say if this was not successful I could have the bag ,now he is saying no and he wants me to have a second opinion I was devastated and was crying and begging him to do it ....he is writing to my GP to get her to refer me to Durham or Newcastle but I feel that the surgeon he refers me to will feel the same as him ,I feel the same as you and would have to go private how do we find a surgeon who would do this

Thank you, I really wish you luck too and keep me updated. I still haven't heard anything from the gastro but I'm trying to be patient and positive. Hope it wasn't just a tactic to get rid of me for another year like she tried doing after my last colonoscopy. Hopefully heading somewhere different really will help you. Just don't give up hope. I'm lucky to have my kids, else I'm pretty sure I wouldn't be here right now. Good luck!!

Hi I meant to wish you all the very best of luck

I hope you get the best results

Keep fighting

Keep us all updated

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.

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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

Hi there same boat for twenty years I would do any thing to get bag if you had any success please let me know

I promise when I finally see the end of this road in sight I will let you all know and write a longer post on my experiences

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I know of a lady who ended up with a bag after diverticulitis. It's awful for her to manage. My friend had a temporary bag after her colon was removed and she loved it as it gave her freedom.

I suppose everyone is different.

Personally it's something I would never consider for IBS unless absolutely a final last resort but I'd literally have to be on the brink of death with no other options.

I know my bowels don't function properly and I have some inflammation in there. I'm in pain to the point of collapse sometimes, with stuff coming out of both ends. Like you I've tried lots of things, but I'll try more. I still work but normally spend most of the weekend recovering as so bloody knackered. I take stuff when absolutely necessary to aid working and being able to function to some degree.

From one day to the next things wain and return.

It's bloody hard and sometimes life restricting but I get by and take each day as it comes.

Hi just an update

I am seeing a new consultant in Durham also been referred to professor Yan for my constipation

I am still wanting an illeostomy I am reliant on laxatives cannot use enema’s or suppositories due no sphincter Tone... I am offen court short so I am mainly house bound now

As anyone heard of ACE Antegrade continence enema ?

I think this maybe an option

Any update on your progress

Maggie

Hey, I have been waiting for almost 8 months for my Gastro to give me a name of a surgeon she would like me to get my gp to refer me to, for a discussion (She remains very pesimistic that anything will come of this) I've been trying diets and "healthy" living again including giving up caffeine smoking and severly reducing sugar intake aswell as experimenting with different diets, all to no difference at all, as usual.

I have been offered surgery twice before, both times it never went beyond an assurance that it will be discussed after "One last second opinion". One surgeon left the nhs, and the other was told that the nhs wouldn't pay for it. The one who left the NHS suggested the ACE procedure. I see it as second best, but better than nothing. In my mind I would hope that after a while, my body would have become reliant on the nightly/every other nightly enemas through the stoma and thus prevent sudden attacks. These sudden attacks that come out of nowhere and sometimes faster than I can get to the toilet is precisely why I want surgery. Though the ACE doesn't guarantee this, and it would do nothing for the pain I experience, nor the frequent bleeding I get (Yes my gastro insists its ibs despite colonoscopies showing inflammation and ulceration (She blames the prep laxatives for all the inflammation and ulceration they have seen because in about half of my colonoscopies were normal))

So i've always maintained that if my choice is A.C.E or nothing, I would rather try something than continue to live miserably like I am now. As I am writing this, I haven't been able to eat for 2 days because every time I eat even a bite, within 20 seconds my bowels feel like they are on fire, and ive passed nothing but small amounts of blood for 3 days, and even with all these symptoms, I feel like A & E and GP are just a complete waste of time even if it means I could be toying with possibly death. I hate being in this position. (I promised my partner if I get a fever then I will go to drs or a & e because im most concerned about perforation and sepsis rather than vit deficiencies and anaemia)

I appreciate you keeping me updated, and ill keep you updated when I can also :)

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