Top surgery after colectomy + ileostomy?

[Nephyria]

Hey all, I'm a 27 year old transgender person with Crohn's/Ulcerative colitis. I've been in a moderate/severe flare essentially since I was diagnosed at 21, with minimal relief from treatment. I've run the gamut on every drug treatment available to me through insurance, but it's mostly just keeping me from having even more excessive symptoms. My body is apparently very, very good at making medication stop working--Stelara worked for 8 months, it was glorious, and then my colon went right back to just sorta eating itself from the inside out.

My doctor is recommending a total colon removal, given the scope and severity of my condition, although I could potentially try Humira or a clinical trial before that, because lets face it--who wants to have surgery and a hospital stay in the middle of a pandemic, particularly when it's legal for a hospital in the USA to be like, "Yeah, we don't have to treat you! Because you're trans. We know it's unrelated to your condition. Sucks to be you" ????

Thing is, I would very, very, very much like to get a double mastectomy, not only because of the terrible gender dysphoria, but also because I've got chronic back pain due to The Weight Of The Issue and always sitting hunched trying to hide it. I can't wear compression shirts as frequently as I'd like either, as it puts pressure on a repetitive stress injury and gets agonizingly painful after a couple hours.

I cannot find a SINGLE RESOURCE about getting a voluntary mastectomy after getting a colon removal. It doesn't exist! I've looked everywhere from trans-specific forums to breast cancer forums, and I'm losing my marbles because apparently it's never been an issue.

I have found resources about getting top surgery while chronically ill, and there are A Few Issues, namely that my medications (Lialda, Imuran+Zyloprim combo, Stelara) and condition (uncontrolled, symptomatic flare) can make me potentially ineligible for surgery, due to a higher risk of complications and/or infections. Considering the Imuran+Zyloprim put me in the hospital once for a bad case of Oh Shoot, We Didn't Mean For ALL The Blood To Stop Happening disorder, I can see why.

If it's helpful, I live in the midwestern USA, and would probably be seeing a private surgeon rather than one in the insured route, as I can't afford the required 2 years of consistent in-person GID therapy AND Crohn's-specific treatment AND every other medical thing I have going on, and still expect to keep my job. It's genuinely cheaper.

So! Double Mastectomy with an ostomy bag. Has it ever happened? Any advice?

 

[Delta_hippo]

Hello
I don’t have answers for your particular situation I’m afraid but a couple of thoughts.
Re the total colon removal from what I understand depends if you have Crohn’s or UC. I have a friend with UC and total colectomy stops the disease. With Crohn’s, it can continue in other parts of the digestive system so there is still a need to find an effective treatment.
Have you had an ileostomy bag before? They are a good solution for many but bring their own joys (in my case the skin the bag stuck on HATED it and had lots of issues with redness/ itching, my friend has been fine on that score but has to be very careful with diet to avoid blockage)
So if you have UC I would definitely try all drugs first, if you have Crohn’s it might be that doc wants to remove diseased tissue to give drugs a chance to work without an active inflammation battle.
In terms of adding the double mastectomy, I can only advise, the bowel resection I had (admittedly emergency not planned) was a big enough deal in itself and I would not have wanted anything else to deal with at the same time let alone a big surgery on another body part. Similarly the friend with uc I’m pretty sure would say one big op is quite enough. Think about your recovery- you have to protect your abdomen, if you also couldn’t use chest muscles I think that might be really tough.

So maybe worth staggering the operations would be my view.
Whether whatever drugs you are on make them reluctant to do the breast op, I don’t know I’m afraid.
Good luck going forward

 

[Nephyria]

Hello
I don’t have answers for your particular situation I’m afraid but a couple of thoughts.
Re the total colon removal from what I understand depends if you have Crohn’s or UC. I have a friend with UC and total colectomy stops the disease. With Crohn’s, it can continue in other parts of the digestive system so there is still a need to find an effective treatment.
Have you had an ileostomy bag before? They are a good solution for many but bring their own joys (in my case the skin the bag stuck on HATED it and had lots of issues with redness/ itching, my friend has been fine on that score but has to be very careful with diet to avoid blockage)
So if you have UC I would definitely try all drugs first, if you have Crohn’s it might be that doc wants to remove diseased tissue to give drugs a chance to work without an active inflammation battle.
In terms of adding the double mastectomy, I can only advise, the bowel resection I had (admittedly emergency not planned) was a big enough deal in itself and I would not have wanted anything else to deal with at the same time let alone a big surgery on another body part. Similarly the friend with uc I’m pretty sure would say one big op is quite enough. Think about your recovery- you have to protect your abdomen, if you also couldn’t use chest muscles I think that might be really tough.

So maybe worth staggering the operations would be my view.
Whether whatever drugs you are on make them reluctant to do the breast op, I don’t know I’m afraid.
Good luck going forward

I was initially diagnosed with UC, and there's some deliberation on whether I have Crohn's as well. Regardless, I'm pretty much at the limit of chemical treatments available--I've gone through long-term Prednisone, Lialda, Imuran+Zyloprim, Remicade, Entyvio, and now Stelara. A lot of these are supposed to be effective for years at a time, but my body is too good at making them mostly or completely ineffective in months. Stelara being the most effective at 8 months straight isn't a great track record for a condition I was diagnosed with 6 years ago. There's no guarantee my insurance will approve me for Humira, as it's considered "on the same level" as Remicade.

I haven't had an ileostomy bag before, so it would be a very new experience for me! I've been doing a lot of reading to get an idea of what to expect, and I really appreciate the heads up. I'm getting the idea that wearing a chest binder/compression shirt with an ileostomy bag would be a bad, bad idea, as it tends to squish down everything front-torso pretty firmly. Think a corset, but with no bones, just fabric.

I would never be getting these surgeries in the same time frame! At least a year between surgeries, oh my goodness, my poor body (...and bank account...) hurts just thinking about it. Any two surgeons who agreed to operate in that same time frame are not ones I'd trust with a knife! Recovery period and process is similar-ish, though I think there's a higher chance of infection with abdominal surgery. I just don't know if a surgeon specializing in mastectomies would operate on someone with an ileostomy bag, or what kind of special prep and post-op care someone with an ileostomy bag would need after a double mastectomy.

Thank you for taking the time to reply, it means a lot to me!

 

[Delta_hippo]

Wondering if it is worth looking into the antibiotics/ anti-map route if immunosuppressant and biologic efforts going nowhere. It has been talked about for years, Redhill did a trial last year (maybe 2019) and like every other drug seems to help a few and do nothing for others. Google human para website. I asked my GI about it and he said it is an option if biologics don’t work. (In the UK)
Also note you didn’t say Humira, not sure if worth a punt?
Otherwise agree there is a lot to think about in terms of boobs/ ileostomy. I agree squashing things down unlikely to help intestines and stoma but where that leaves you psychologically/ gender wise I don’t know.
Good luck

 

[Delta_hippo]

Also, keep an eye on qu biologics ssi development (if you end up still needing a treatment) - their early trial looked a bit hopeful.

And of course tons of diet options which help some folk.

 

[Tony H]

Hi Nephyria , I had/have UC for over 30 years , had good periods of remission but eventually had to have a sub total colectomy (removal of almost all of the colon apart from a small section connected to the anus ) ,
I was the BEST thing to ever happen to me , I wish I had it done 30 years ago , my experience with my ileostomy has been mainly good , with a little advice , not from the nurses and docs but online forums like this and veganostomy.ca I have learned to cope with having an ostomy really well,
I found that your attitude and positive thinking is essential if you go this route , with me I went from being 120lbs pre surgery to a healthy 170 lbs now ,
I have pre covid , travelled a lot , which I could not do previously , I was always making sure there was a toilet available before even making small journeys , you might have mishaps along the way , sore skin under the appliance , chance of system blockages and possible leaks , but personally if I can manage it anyone can , in the 4 years post surgery I have only had two close calls with leaks , one at home in bed and one outdoors both which I was able to deal with quickly and fairly easily ,
If you have any questions feel free to ask me through the thread or DM , this forum is a great place for info and to be honest is better for post op questions than most hospitals .

ps heres the link to veganostomys site , great videos and how to's

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