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Crohn's Disease Forum » Surgery » Help! I'm afraid of my surgeon!


12-08-2017, 03:43 PM   #1
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Help! I'm afraid of my surgeon!

Hi everyone.

I have adverse reactions to latex, synthetic rubbers, and petroleum, and I fear my surgeon either doesn't understand the implications of this or doesn't accept it as reality.

Latex allergy is well known and medically accepted. But synthetic rubbers and petroleum less so. If my skin is exposed for a short time, it causes minor inflammation. Prolonged exposure causes blistering leading to skin sloughing. My mucus membranes (mouth, rectum, vagina) react with blistering and skin sloughing within hours. I cannot, for example, use latex nor non latex condoms without severe burning pain and blistering in my vagina.

My surgeon installed a silicon (synthetic rubber) seton despite my concerns, saying she has "never" seen a reaction to the matetial. I paniced and objected as soon as I was awake, but was convinced/placated/told if we removed it now I might backslide medically/have no other options. So I suffered for 4 weeks of agony and spasms til I insisted it be replaced with silk. Upon exam, the silicon seton caused fissures, skin tags, and a constantly bleeding rectum.

My doc offered 3 rectal ointments to help the pain/healing, but THEY ARE ALL PETROLEUM BASED. She wasn't aware; I had to ask for ingredients lists from the hospital pharmacy and report to my doc. These are compounds formulated in the hospital pharmacy; I feel like they must have alternative bases for the ointment, but my surgeon doesn't seem interested in pursuing that course.

A week after removal, its just beginning to improve, but the silk seton feels like sandpaper against all the raw flesh. I feel the cause of the damage is obvious, but my surgeon simply characterizes it as "patient could not tollerate the seton." She will not countenance that it was the material of the seton causing blistering and skin breakdown, and suggests instead it was the size. She has also seen topical patches containing petroleum cause blistering on my skin, but dismissed it out of hand.

I'm becoming afraid of what I will wake with next time I'm in for surgery. I am afraid she is completely dismissive of what could be a life threatening substance. And I'm doubly afraid that this is the status quo in the medical community, and that all surgeons would be similarly dismissive, because it is a poorly researched phenomena.

Help! Should I be scared? Should I find a new surgeon? Is there any way to ensure my health concerns are adequately addressed when I am unconscious? Do you have any experience with this? Please share.
12-08-2017, 04:33 PM   #2
ronroush7
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Hi. I would look for another surgeon.
12-08-2017, 11:15 PM   #3
Dyana
 
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...

Last edited by Dyana; 12-09-2017 at 10:39 PM.
12-09-2017, 08:18 AM   #4
Lisa
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If possible, see an allergist and get documentation on your medical record as too what you're allergies and sensitivities are. Whenever you go to an appointment, make sure you document also when you fill out any paperwork or talk with a nurse etc.

I have on my own record that I don't tolerate flagyl, as it makes me very sick feeling.....

My mom has latex on her chart- she has never had an actual reaction, but as soon as she comes in contact with it she gets an "impending sense of Doon"- that's exactly how she described it, and her doctor's take her seriously!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-09-2017, 12:10 PM   #5
Bufford
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Write down and document everything you can with your experience with this surgeon as this will be needed should you take legal action. Insist that your medical professional takes you seriously with your symptoms and when they push you, you push back. Don't take anything that you believe will do harm whether it is meds or procedures. Look for a new surgeon in the meantime.
12-09-2017, 12:26 PM   #6
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If possible, see an allergist and get documentation on your medical record as too what you're allergies and sensitivities are. Whenever you go to an appointment, make sure you document also when you fill out any paperwork or talk with a nurse etc.

I have on my own record that I don't tolerate flagyl, as it makes me very sick feeling.....

My mom has latex on her chart- she has never had an actual reaction, but as soon as she comes in contact with it she gets an "impending sense of Doon"- that's exactly how she described it, and her doctor's take her seriously!
Yeah, docs are familiar with latex allergy, that one is easy. It's the synthetic rubber and petroleum that they dismiss. I tell them at every appointment and pre-op though. I try to tell EVERYONE on my pre-op surgery team about it, but there are so many people coming and going and asking questions, I often can't keep track of who is who.

Seeing an allergist is a great idea, and one I've been kicking around. But I'm a medicaid patient, and I'm afraid I wont be able to get through the beauracracy or red tape in time for surgery. And lots of specialist are taking time off for the holiday season.

I know: that's a nihilst perspective. I should try...but I am honestly so exhausted by current treatment and painful recovery it feels like an impossible task.

I will try. Your suggestion is a great one, and one should listen to good advice, even if it's hard to follow. I have an amazing partner supporting me through this; if I would just ask him to help he would help with the process. I'll start there.

Thank you for your perspective and support
12-09-2017, 12:40 PM   #7
AreWeThereYet
 
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Write down and document everything you can with your experience with this surgeon as this will be needed should you take legal action. Insist that your medical professional takes you seriously with your symptoms and when they push you, you push back. Don't take anything that you believe will do harm whether it is meds or procedures. Look for a new surgeon in the meantime.
I want to be clear: I will not be taking legal action.

I believe my surgeon is using the language they are because it protects them from malpractice. If I sue, I perpetuate the litigous medical culture that has created this situation. Ergo, I will not bring legal action unless I am the victim of violence or gross negligence.

I know that this view is probably not in my best personal interest, but I cannot ethically petpetuate a harmful system.

That said, I'm learning the hard way how to push back against my surgeon when I feel something is not right, and I think that's great advice for everyone on this forum.

On the looking for a new surgeon topic: my current surgeon offerred me a referral for a second opinion. Should I take her referral, or is it biased? Should I seek a n alternate referral through my GP?

Thanks so much for your perspective. Through conversations on this thread, yours included, I'm starting to feel a little more in control of my options and opinions. <3
12-10-2017, 04:42 AM   #8
HollyH
 
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More and more Iím learning I have to be my own advocate and if that means finding a new doctor I do. I used to be meek and afraid to say anything contrary to the doctor but Iíve learned that itís my body and I need to trust that my doctor is working with me as a team. Itís the only only way for me now after too many bad experiences.
12-10-2017, 06:31 AM   #9
fuzzy butterfly
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Hi you are the best person to stand up for you.. you know your own body better than anyone, no matter how high n mighty they are or think they are doctors n surgeons are not always right. Stand your ground and dont let them sway you when you know whats best for you. Wishing you the best of luck and the strength to fight your corner.💞
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12-17-2017, 10:59 AM   #10
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Thanks everyone. This week, thanks to the infection tunnelling and forming a secondary sbscess, I had another deroofing and seton placement. My doc and I seem yo be on the same page now. We don't always agree, but we've finally developed some trust, and can discuss options in a productive way. My surg might not understand WHY my body is so sensitive, but she is now treating me as a chemically sensitive medical outlier. This is a big change and huge relief for me <3
12-17-2017, 11:56 AM   #11
ronroush7
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Thanks everyone. This week, thanks to the infection tunnelling and forming a secondary sbscess, I had another deroofing and seton placement. My doc and I seem yo be on the same page now. We don't always agree, but we've finally developed some trust, and can discuss options in a productive way. My surg might not understand WHY my body is so sensitive, but she is now treating me as a chemically sensitive medical outlier. This is a big change and huge relief for me <3
I am glad.

12-18-2017, 02:53 AM   #12
fuzzy butterfly
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So glad you have reached an understanding with your doctors. Hoping things can now improve for you. Best wishes 💕
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