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Crohn's Disease Forum » Surgery » Stoma Subforum » Why are some doctors so against ostomies?


12-06-2013, 10:14 AM   #1
UnXmas
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Why are some doctors so against ostomies?

I have had the same GP for years, she knows me and my problems very well. Sometimes she has helped me immensely, but other times I feel like she just doesn't understand my illness or where I'm coming from at all, and she gives me bad advice.

For years she has had to listen to me complaining about worsening bowel problems and how nothing is helping, and I know it was frustrating for her to not be able to help. (For those in other countries, a GP is not a specialist, so technically it wasn't her responsibility to treat me after I'd been referred on to consultants at hospitals, but in practice she still ends up dealing with many of my symptoms.)

Those of you who've read my recent posts will know how wonderful I've found having an ileostomy. It is so so much better with a stoma. I did have some awful complications from the surgery, and was very unwell, but now I'm recovering well.

My GP had previously told me that having a stoma was a bad idea. When my surgeon first suggested it (as a potential last resort) a few years ago, she said I shouldn't be considering it. Her reasoning at that time was that with less intestines I'd be less able to absorb properly. I'm not sure how accurate that was since I'd already had a total colectomy, and my ileostomy did not involve the removal of any of my small intestine, as far as I know.

I went to see her for the first time since my ileostomy, thinking that after so many years of nothing helping much, she'd be pleased for me when I told her what massive improvements having a stoma has brought. But I received a lecture on the dangers of the surgery. She told me it was stupid (not her exact words, but I think that's what she implied) of me to have gone through a non-emergency surgery when I'm so underweight. She told me my low weight was responsible for the complications I suffered after surgery (I've no idea how this could be true). She wasn't the least bit interested in hearing about how happy I am with the stoma (and I had a whole speech prepared ) and instead we spent twenty minutes (of a ten minute appointment) going over all the ways the surgery has potentially damaged my body.

What really got me was that one of the reasons for avoiding a stoma was because I'm young and therefor should feel embarrassed about having an ostomy bag. I'm sure this is true for many people, and that people of any age may find the bag embarrassing and need to take that into account in deciding whether to have an unnecessary stoma. But I don't feel embarrassed by it. I actually found it far more embarrassing to have gone through my teenage years with bowel incontinence, having to wear an incontinence pad all the time, and not being able to control wind. But my GP knew I went through all that and had never once brought up how that must affect me emotionally. But now I have a bag and she's telling me I'm supposed to feel embarrassed.

I've had this before - I had one insane gastroenterologist who told me I should never have parts of my digestive system messed with because it goes against the laws of nature because nature has provided me with a perfect body but I never went back to him and wrote him off as a doctor obviously not on the same wavelength as me.

But I really like my GP. She knows me better than any doctor other than my surgeon. I know having major surgery when it's not life and death is a big deal, but I didn't go into this lightly. It was a last resort, when all other options had failed. I respect that her opinion is to refrain from unnecessary surgeries, but I thought that with the so far positive results she might also be able to respect my decision that the stoma was right for me.
12-06-2013, 11:41 AM   #2
Nyx
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I think the majority of responses from people who don't have stomas (doctors included) is that it would be disgusting, shameful, abnormal, and a host of other unseemly adjectives to have to have one. I know that before my surgery, I sure as hell never wanted one. I had no idea what they really were, or how they could have made my life 100x better than it was. I was willing to put up with incontinence, pain, and bleeding rather than get a stoma. My GI never mentioned it to me, just kept putting me on different drugs. But then my body took over and made the decision for me...lol My surgery was an emergency after perforating my sigmoid colon and distending my bowel. And Oscar was born

Don't get me wrong, there have been days where I've felt disgusting, and abnormal, but it's still 100x better than the way I was living prior to it. Don't let your Doctor's opinion get you down - you know that it was the best thing for you and that's pretty much all that matters in my opinion.
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12-06-2013, 12:00 PM   #3
VeganOstomy
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If I had to choose between taking medication with side effects like cancer, fatal infections or rage and an ileostomy, I'd go for the stoma.

My surgeon, my gi and a nurse that was handling my case during a drug trial all knew that surgery would get me back on my feet.

Belive it or not, some people will endure the worst of IBD in order to avoid an ostomy. Some people simply can't (or refuse to) accept it. I've spoken with homecare nurses who say they have patients who won't even change their own ostomy appliance because they hate it so much. Some may even regret it later on. Perhaps your doctor wants to avoid those kinds of issues.

Also keep in mind that surgery doesn't always help with IBD and/or causes further complications. In that case, I could understand why some doctors reserve that option after everything else fails.

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12-06-2013, 12:08 PM   #4
highlandsrock
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It's a shame you didn't get a better reaction from your GP. If I had a lecture like that then I'd change GP, no matter how long I'd been with them or how much I had previously liked them. Clearly surgeons would rather not fit them if there was an alternative. The first word my surgeon uttered after my op was "Sorry" because I had ended up with one but you only have to look through this forum to find many success stories. They wouldn't have carried out your surgery unless it was necessary and must have been guided by your GI. I don't understand your GP's attitude.

I know what you mean about knowing nothing about stomas. I'd heard of people wearing "bags" but had no idea what they looked like or how they worked. The reality of having one (albeit temporarily) was far easier to deal with than I ever imagined.

Also it's far better to go for elective surgery where you get a chance to plan your hospital stay, recovery, prepare yourself mentally for what lays ahead etc than end up as an emergency, like Nyx mentions, with the possibility of being too far gone to pull through.
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12-06-2013, 07:29 PM   #5
nogutsnoglory
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I think doctors should guide and support but this doctor seems to be stepping over their boundary. If you needed a stoma and you feel good about it why the hell is she trying to make you feel insecure about it? She doesn't have to agree with the creation of it but it is there now and she should treat the whole you.

I agree that it's best to avoid resections but in many cases resections and diversions are life saving and life altering. It's unacceptable for someone to tell someone to go on suffering or risk death to avoid surgery. Maybe she is against heart transplants too? Sorry but her words to you aggravate me.
12-06-2013, 08:02 PM   #6
2thFairy
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My GI suggested that I have a colectomy and he was such a great salesman about how GREAT they were, that I actually considered it. I don't think any other doctor would have been able to present it to me quite that way and still have me listen to them. It still took me 6 months to agree to it. It was the best decision I made--no regrets.

I recognize that his attitude about it totally helped me have a good attitude about it. If any doctor had told me before surgery that it was something to be ashamed of, it would have stayed in my head and I probably wouldn't have gotten past it. I give you props for pushing forward!

I have walked away from many doctors over the years for being jackasses. I think many of them need to put away their own personal opinions and go back to the textbook sometimes, getting a refresher on what is best for the patient.
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12-07-2013, 01:32 AM   #7
DustyKat
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Well tickle my arse with a feather! To put it none too plainly UnXmas your GP is a deadset nutter. Iím not saying that she isnít good at what she does day in and day out BUT she is not a specialist, she is not dealing with this disease nearly enough in a professional sense and certainly not as an individual.

I understand and appreciate that you like your GP but I will go so far as to say she has no right to make those sort of comments or judgements and the fact that she cannot see how beneficial this has been to you smacks of arrogance and ignorance.

Iím sorry but this sort of rant by a doctor is out of order and disrespectful to you. As you say, this is a decision no one takes lightly and certainly not without the advice and knowledge of specialist GIís and surgeons. Until she walks a mile in your shoes I think it best she keeps her mouth shut.

Donít let her pull you down hun, you have done what is right for you and while ever you are happy with the decision and the obvious benefits it has given you then that is all that counts.

Onwards and Upwards!

Dusty. xxx
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12-07-2013, 05:39 AM   #8
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Thank you all for your responses.


I agree that it's best to avoid resections but in many cases resections and diversions are life saving and life altering. It's unacceptable for someone to tell someone to go on suffering or risk death to avoid surgery. Maybe she is against heart transplants too? Sorry but her words to you aggravate me.
I think she wouldn't be so negative about it if I had been risking death. I wouldn't have died without the stoma, it was purely a quality of life thing.

I don't think I can just switch to another GP though as starting over will be so difficult - when you're booked in for a ten minute appointment, trying to condense even a fraction of my medical history into that time span is impossible, and I have an arrangement in place at the moment that the surgery always books me in with this GP for that reason. Plus in the past when I had different GPs when I was away at university, they were often not that great either!

I have made another appointment with her, and I plan to use to explain how her comments made me feel. I have that annoying feeling you get where you think of all the things you should have said only after the appointment's over. I just sat there listening and nodding at the last appointment. The only thing I said that I wanted to say to her was how pleased I was with the stoma, which she didn't really acknowledge, just went straight on to the dangers of the surgery. Maybe I'll keep any questions about or problems with the stoma to appointments with the stoma nurse and surgeon, and all other health problems to this GP.

I also remembered that prior to the surgery she said she felt like a "worried mother" at the idea of me having it done, so I'm wondering if all her warnings about the dangers were actually coming out of real concern for me rather than just plain criticism. I am extremely underweight and had serious complications after the surgery. I have known her for years and we do speak about a lot more than just medical issues, we don't have the same professional boundaries that you usually have with doctors and patients.
12-13-2013, 06:18 AM   #9
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I had another chat with the doctor. She's still wasn't overly-enthusiastic but did say she was pleased that it was working well for me, and I think I managed to get across that my symptoms were/are severe enough that major medical intervention is not as inappropriate as she'd suggested.
12-13-2013, 07:19 AM   #10
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I am just involved in a research study on this very thing, I think healthcare professionals really pitch stomas in a bad light, and yet for some of my patients (and most of my IBD patients) they have been life changing in a positive way!
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