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AIBU?

AIBU to ask for this surgery?

30 replies

purplepansyem · 20/01/2017 14:18

I've had an Ileostomy for almost 14 years (for those of you who don't know what that is, think colostomy bag). When I had it done I was morbidly obese (almost 22st) and I had a large but smooth stomach. After a couple of years, I developed a parastomal hernia almost directly under my stoma. I had a few leaks but managed to find alternative medical appliances to use which solved the problem. In August 2014, I had gastric surgery to enable me to lose weight. I lost approx 9st and although my stomach shrank and became baggy, the hernia kept the area beneath the stoma smooth so no further leaks occured. Then, in July 2015, my hernia strangulated and I had to have emergency surgery. The Surgeons fixed the hernia which caused my stomach to deflate beneath the stoma and I began to have leakage problems. Since July my life has been very stressful because I am having on average between 1-4 leaks a day. My husband has been sleeping on the sofa because I have leaked fecal matter on him. I've leaked in the supermarket, out with friends, during the night, in a club etc, etc. When I say leak, I'm talking anything between a slight leak to a full on leak which comes through my knickers, jeans, top and all over the inside of my coat. I leaked at my brothers dinner table and once, rushed to my friends bathroom but leaked all up her stair carpet. I've seen a general surgeon, stoma nurses and my GP and they've all said the same thing, that re-sighting the stoma won't fix the problem and the only solution is to create a smoother, flatter stomach. But this means asking for a tummy tuck or apronectomy which is classed as plastic surgery. I am seeing an NHS plastic surgeon on Monday and I am going to have to beg and plead for this surgery and because of the funding issues etc, there is little chance I can have it. AIBU to think I should be eligible for this surgery without having to beg for it? I pay my stamp and I'm not asking for it for cosmetic reasons. My life is a misery and my skin is very sore because of constant leaks. What do you think? (please be gentle, as I'm feeling rather stressed and vulnerable at the moment).

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Grumpbum · 20/01/2017 14:20

I think you have a good case, especially as you are presumingly being backed up by general surgeons saying that resiting the stone will not make a difference. Good luck

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Ginmakesitallok · 20/01/2017 14:21

Of course yanbu! You need this surgery for medical reasons, not cosmetic. Ask them!

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CupofTeaTime · 20/01/2017 14:21

Yes definitely ask. You need this for more than cosmetic reasons and you can't carry on living like that. I would think your GP would refer you and the funding for the operation is then discussed via a special panel. Good luck with it all Flowers

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Slightlyperturbedowlagain · 20/01/2017 14:21

Personally I think if that is the only way of resolving the leaking problem (which is obviously having a major impact on your quality of life and the way you are able to live) then it should be done on the NHS. Good luck, hope you get it Flowers

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JennyOnAPlate · 20/01/2017 14:21

I don't think you are being at all unreasonable Flowers

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BreakfastAtSquiffanys · 20/01/2017 14:22

Personally I think you need and deserve whatever surgery it takes to sort out your leakage. You're not asking for a smoother stomach for vanity reasons

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kerryob · 20/01/2017 14:24

You're not asking for this for cosmetic reasons, don't think of this as plastic surgery as this is affecting every aspect of your life. I really hope they approve your surgery, my nan had a stoma and it made her nervous to go out as it had burst a few times, no one should live like that. Good luck x

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PacificDogwod · 20/01/2017 14:24

Most health boards make contingents for referral to Plastic Surgery under 'exceptional rules' for cases like yours.
It is worthwhile exploring what your options are.
Bear in mind that an abdominoplasty is (again) major surgery and you've been through a fair bit already by the sounds of it Thanks

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harderandharder2breathe · 20/01/2017 14:25

Yanbu, it's not for cosmetic reasons. It's not much to ask to not have to leak faecal matter in a daily basis.

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Heirhelp · 20/01/2017 14:27

Definitely yanbu. Make an appointment go discuss it today.

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dollydaydream114 · 20/01/2017 14:34

You are definitely not being unreasonable - this is an operation you need to help you lead a normal life; it's not cosmetic.

If it helps, I know someone who had an apronectomy for a medical reason - basically the loose, overhanging stomach was exacerbating another health issue she had. The details are complicated so I won't go into them here but essentially after a bit of going back and forth between her GP and the consultant it was agreed she could have the operation. If anything, I would say that her condition, while uncomfortable, was causing her less stress and embarrassment than yours is.

Good luck - you've obviously been through an awful lot with your health and have had a very tough time, so hope a solution can be found for you.

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SheSparkles · 20/01/2017 14:38

Ok technically it's plastic surgery, but in your case it's for a reason far from the usual cosmetic surgery reasons. Would your surgeon support you with your request? I hope you can get it

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Jellybean83 · 20/01/2017 14:47

YANBU at all. I have an ileostomy too so I know how awful a leak can be, thankfully it's very rare for me now. I did go through a rough patch with a retracted stoma and retractional leakage causing sore red skin which meant my bags wouldn't stick properly, so I know how utterly miserable you must be feeling to have it all the time.

You obviously really need this for any sort of quality of life and I sincerely hope you get the outcome you need. Flowers

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Idefix · 20/01/2017 14:51

Yanbu, I will have my fingers crossed the outcome is successful op. Your request is not for cosmetic reasons but for quality of of life reasons which I would hope that there would be contingency funding for.

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Cheby · 20/01/2017 14:58

YANBU OP. You may need to apply (hopefully with the support of your GP) to your CCG's exceptional circumstances panel, but I do think this should meet the criteria.

Just bare in mind the process; it won't be the surgeon who has to agree to be funding. The surgeon will assess whether the operation is feasible, whether it will fix the problem and whether you are a suitable candidate (health-wise). After that the funding request will be submitted to your CCG who will have to approve it. Don't be disheartened if it's refused at first, there are probably going to be a few hoops to jump through.

I think it's encouraging that you've been referred to an NHS plastic surgeon in the first place; if this was a purely cosmetic op you wouldn't even be referred. So someone somewhere has the point of view that you need to have this operation.

I wish you all the best with it. X

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Strongmummy · 20/01/2017 15:24

Not being unreasonable at all. You can't live your life properly; it's a disability. All the best with this

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purplepansyem · 21/01/2017 11:23

Thanks so much to everyone who has replied to me. I feel a lot more positive and I will update you on Monday afternoon after I've seen the consultant :)

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EmbarrassingBaddie · 21/01/2017 11:26

YANBU. At all. Good luck Flowers

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BitterAndOnlySlightlyTwisted · 21/01/2017 11:40

My advice for when you see the consultant? Cry. Beg. Focus on why having anything approaching a normal life for you right now is absolutely impossible. If anything, over-state it. Give them the tiniest inkling that you could soldier on without the surgery being carried out immediately, and even if it's approved, you could be put on the very bottom of the waiting-list. This is the voice of experience talking.

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ginnybag · 21/01/2017 11:48

Isn't this what the NHS is for? If this is the procedure you need to fix a medical issue that's seriously impacting your health and well being, then of course you should have it! Who cares what bracket of surgery it technically is!!

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Babbaganush · 21/01/2017 11:51

You NEED this procedure for clear clinical not cosmetic reasons! Keep focused on that and really fight your case, you already have the backing of your medial team. No one should have to live with a leaking stoma!!!!

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SpringBail · 21/01/2017 12:01

YANBU and need this op not for vanity reasons but health reasons and it is obviously impacting on your life and you shouldn't have to cope with constant leaks which is embarrassing and sore.
I hope the consultation on Mondays goes swimmingly Flowers

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Jaxhog · 21/01/2017 12:29

YANBU. The result may be the same, but It isn't plastic surgery. It's necessary surgery to give you better quality of life. Good luck!

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MatildaTheCat · 21/01/2017 12:29

You've written a very articulate account of the problems you are having and I would imagine it is having an impact on your mental health, too. I would write a letter bullet pointing the issues, giving examples as you have here. Then the doctor will be able to present this to the decision makers.

The only bit you should leave out is, 'I've paid my stamp'. That's irrelevant and not how the nhs is funded. I would be more along the lines of appreciating how overstretched the nhs budget is and yet you sincerely believe this surgery is not cosmetic but medical.

Nb I had a friend who had it done and I hate to be a doom monger but it was very, very tough and the recovery was slow. But it did help her.

Good luck. Flowers

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olympicsrock · 21/01/2017 12:57

I am a surgeon and I agree that if the plastic surgery team feel that the operation would solve the leaks then it should be paid for on the NHS

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