Surgery objections - can you counter these?

I can't travel to many countries, 3rd world or otherwise, with UC and on xeljanz- can't go anywhere requiring a yellow fever vaccine because it's live, or anywhere with a substantial risk of food poisoning.
A couple of years ago I missed my friend's wedding in India because I was mildly flaring and on steroids and imuran and it just wasn't safe, either to do the long haul flights (risk of thrombosis) or stay in a place where the food was likely to make me sick.
I'd imagine having an ostomy removes some of those restrictions.
Last time I had a bone density scan my Z number was around -4.5, which is pretty severe osteoporosis so I also live in fear of falling over and fracturing a vertebra. For that reason I would choose surgery over prednisone unless I was in a life threatening emergency situation.
Not saying life is a walk in the park with an ostomy, but it's not necessarily any easier living with colitis...

Poopydoop you make a valid point about steroid usage. I'm back on prednisolone foam enemas which has reminded me to book my next Dexa scan as I tick pretty much every box for osteoporosis risk.

After reading about a rock climber who 'got her life back' I was hoping that if / when the time comes to have surgery I'd have more freedom to travel. I'm pretty sure someone I know went diving with an ileostomy.

Being able to travel and see this beautiful planet is something that I value greatly - where there's a will there's a way!

UCyousee said...
Poopydoop you make a valid point about steroid usage. I'm back on prednisolone foam enemas which has reminded me to book my next Dexa scan as I tick pretty much every box for osteoporosis risk.

The steroid risk is scary. My DEXA scans have been up and down over the years. During remission periods, I've been able to rebuild skeletal mass quite effectively with various protocols, but it only works if remission is sustained. Start steroids again, and you start losing again. Modern medicine's recommendation of "take calcium" is not helpful. There's a lot more that has to be done. Sometimes it feels like a merry-go-round.

Colectomy and ileostomy are also scary, especially if there are questions about whether or not you can get a j-pouch, or if pouchitis will happen. I know someone who got a colectomy because a j-pouch was promised, then their diagnosis was changed to Crohn's and they said sorry, tough luck. He wouldn't have had surgery if j-pouch weren't an option. This disease is a nightmare and the treatment options open doors to possible new nightmares. I am traumatized, severely. I have severe complex PTSD from having UC and people who write that off by saying surgery will make the nightmare go away are pretty much gaslighting. I wish there was more compassion and less defensiveness. My only agenda here is to learn all I can to mitigate this nightmare, from ALL AREAS OF MEDICINE, not just conventional.

I frankly feel that the choice between toxic medications and surgery is a joke. They are failing us. And the alternative health world is so all over the place. Some things work, some things don't, but honestly at least they are trying to come at it from a different angle. Yes I am angry. I am not angry at patients, or people who get ostomies, or people who decide not to get ostomies. I'm angry that all the bureaucratic red tape, economic corruption, and human lack of priorities is keeping so many people ill, while the IBD rate continues to rise insanely in the western world.

I hope this clarifies where I'm coming from. Love and compassion to you all.

ambling said...
Van, anger seems to only really hurt the person with the anger - no one else (though it annoys and upsets people close to you.) The only thing to do with it is practice letting go of it.... it really takes practice... there's so much to feel angry about - this crappy illness is the worst and it seems to get some of us like nothing anyone could imagine. It's horrid.

The idea that we have a choice is interesting. It would be nice if we really did... sometimes it's just to powerful to allow any choice at all, other than how we react.

I agree, anger is hurtful, but it's also real and comes from lived experience. I can't just "let go" of my anger, I have to do things that help me let it go. And one of those things is research and learning. Anger often covers up helplessness, and when I learn all I can, I feel less angry.

But there is real injustice in the medical world. They are not doing all they can to help us. It's so obvious. Individual doctors vary, I'm talking more about the institution as a whole.

You can just let go of anger. Anger is indeed real, and also unhelpful. It was used as a way of stimulating short bursts of energy... probably for hunting. Now? It’s mostly emotional
It isn’t necessary to be angry in order to learn, grow, challenge conventional thinking, or anything else.

ambling said...
You can just let go of anger. Anger is indeed real, and also unhelpful. It was used as a way of stimulating short bursts of energy... probably for hunting. Now? It’s mostly emotional
It isn’t necessary to be angry in order to learn, grow, challenge conventional thinking, or anything else.

Please stop telling me how to feel. My emotions are mine, and not yours to micromanage.

3timechamp said...
Van volunteer at hospitals,volunteer anywhere. Getting out of ourselves is one way we can help this terrible disease. My Gastro said with this disease the better/healthier our mind is the better our chances of dealing with UC. Gloom and doom won't help this disease. I'm a 32 yr vet of UC. I battled this disease until it was time to remove the disease. Don't worry be happy

I hate hospitals, but I do volunteer when I'm well enough. I'm a major provider in my community for a lot of needy people. I just can't do it when I'm lying flat. I agree, getting out of oneself is important. Life is better when shared.

Your anger comes through all the time Van. Who wants to hear an angry kid moaning endlessly?

I agree. Can we stop making this thread about me already? The OP wants to talk surgery and so do I. I've blocked ambling so it's over now.

3timechamp said...
I had bag for almost 8 months. Wasn't that difficult. Sometimes I forgot I had it. The fears I had never came thru. Just another step in the process

Thanks 3timechamp. My gastro tells me that many people who've had surgery thank them (the gastro and surgery team), and say they wish they'd done it sooner, so hopefully if / when the time comes I'll feel the same, and my fears will have been unfounded.

I've accepted it might not be a clear cut decision, it's hard to know when the time is right, and there are good reasons for having surgery, including quality of life, risk of osteoporosis, cancer or bowel perforation, and then there are the times when the decision is made for us, if we have bowel perforation or cancer for example.

I'm repeating myself, but last March when I was in hospital the abdominal surgeon in A&E said it's better if I plan surgery with a colorectal surgeon than have him do emergency surgery - which is something I'm bearing in mind.

I wish my gastro could give me a clearer indication of the condition of my bowel. Is it thinning / scarred? Am I at increased risk of bowel perforation? I'll ask!

Hopefully I'll be trying Xeljanz soon, which might work for a few years, but I've felt since 2014 that eventually I'll be heading towards surgery so it's good to be mentally prepared for this.

TroubledTurds said...
UCyousee >
and the big bonus is something like the AIP diet will help all those other associated auto immune nasties where surgery won't !

Thanks TT. I've been trying to eat foods that will support my gut health / microbiome while flaring but I don't think I'd be able to follow anything as restrictive as the Auto-Immune Protocol at the moment because my appetite is so poor / fragile at the moment. Also I don't eat meat so it looks like I'd be pretty much restricted to fish, sweet potato and vegetables.

One thing I find frustrating about my UC journey is that there doesn't ever seem to be any consistency regarding what's going to get me out of a flare. A couple of times the magic ingredient was good quality MJ. Clipper has worked a few times, and in the past prednisolone foam enemas would sometimes help me turn the corner.

Right now I'm on Humira, Clipper, prednisolone foam enemas, mesalazine tablets, enemas and suppositories, while taking VSL3, slippery elm, turmeric, etc etc, and it's just not working.

I'm getting stomach cramps, nausea and vomiting and therefore can only eat small meals at the moment.

I'm looking forward to this flare being over - oh the food I'll eat!!