Disablity

You know how all these threads go, you're just inviting the anti-surgery trolls to start spouting off about how surgery is the most awful thing in the world.

My experience is that a jpouch is not perfect and I've had my fair share of issues with mine but it is SO much better than living with UC. I wouldn't trade my jpouch for my colon with UC. I suffered way too long with UC. Life is so much easier with my jpouch than with UC.

I'm so torn on this topic right now.

UC is a disability, there's no two ways about it in my eyes. I don't want to be supported by the state, but mid-November I took some time off work to really get this thing under control, and I haven't gone back. I'm just never stable enough to be reliable for work.

I don't think the drugs are ever going to give me any kind of normality. I'm praying my 3rd dose of Remicade can really nail this thing, but in the meanwhile I'm just watching everything slide back to how it was as I slowly taper down the pred. This has been the situation without let up for a year.

And what are the options beyond that? LDN? Humira? 6MP because Imuran made me sick? Well, I could try those, but I don't really see why they'd be any more successful than what I've tried in the past, nor am I ever really going to live normally again on them. No more drinking. Constant watching of what I eat. The nagging feeling that I am living on borrowed time.

No one as yet has told me to get surgery directly, though when I went in for emergency steroid IV treatment there were murmurs about it if I didn't respond. The prospect just seems too daunting. It would feel like an admission of defeat on some level, that all this hair loss and bone damage and other side effects were for nothing and now I have to live as some kind of freak forever. Part of me would just rather die with dignity. Maybe I'm just stubborn, I don't know. But every time I look down at my stomach and think there could soon be a hole spewing waste out, I just feel queasy.

I for one greatly appreciate the positive posts from post surgery. My husband and I go back and forth every week considering my options. Your posts in particular made us really consider it. We had a consult a few weeks ago while I was hospitalized and didn't like that surgeon so we are traveling to Cleveland clinic Wednesday for another one.

I'm responding better than expected to some meds but still flare and still up and down. For me the weight of colon cancer, antibodies to remicade, Imuran cancer risks, steroid side effects, all weigh on me. I realize chances of these are slim but what the heck...I quit smoking to avoid these things. Now I'm loading my body with other crap.

I want my life back. Whether it's through remission or medication. I want to hear positive things. I want hope. And if it means I have to hear the horror stories too, so be it.

Please don't stop telling your story.

Keith,
Thanks for your advice! I agree about surgeons. We decided to pursue Cleveland because we have an appt with a surgeon that studied under dr remzi who as I understand it perfected the j pouch approach. Unfortunately, I have to piggyback the surgery to remove a tumor adhered to my kidney and the first surgeon wasn't as experienced with gyno surgeries as my new one is. Fingers crossed!

I'm hoping for a 2 step. I'll let everyone know how the consult goes. If my body allows it, I'd like to wait until fall. I own a business and just found out my manager is leaving her position June 1st. When it rains it pours.

I only have one thing to say.

Just because surgery went well for you doesn't mean it goes well for everybody else. You are promising people an outcome you can't guarantee they will have based solely on your own experience. I have had a terrible experience, but I at least recognise that's my own experience and not anybody else's. I don't go around warning everyone off surgery based on my own, singular, experience.

That is all.

PS: Yes, I have Crohn's. Yes, I have rectal inflammation. Yes, it is awful without having a colon to even minimally hold things back. No, I don't have abscesses or fistulas or strictures, I just have inflammation.

If you had UC, things might have worked out well for you with a jpouch?

Or I might have developed chronic pouchitis and be in as bad a boat as I am now. You go on and on and on about having your life back, but for me my life is in some ways worse than it was when I had Crohn's and a colon. I'm tied to bathrooms as much as I ever was, and I have to spend ages on the toilet passing miniscule bits of stool at a time. I don't have a bidet so I have to use wet toilet paper instead - do you know how boring it is having to dampen a wad of toilet paper each time you pass a teaspoon of stool? And no I can't skip that stage, because if I do, I develop the butt burn from hell. I already have the urges from hell to contend with.

I did do better with an ileo and I will go back to having one if meds don't work - the main reason I'm trying the meds is because I simply can't face a third surgery and a protracted recovery just yet.

NiceCupOfTea said...

Just because surgery went well for you doesn't mean it goes well for everybody else. You are promising people an outcome you can't guarantee they will have based solely on your own experience. I have had a terrible experience, but I at least recognise that's my own experience and not anybody else's. I don't go around warning everyone off surgery based on my own, singular, experience.

Do we have to quote the statistics about J-pouch surgery for you again?

I know that you don't want to hear it but NSSG did not mention a guarantee/promise in her post but let's not let the facts get in the way.

The vast majority of the people with J-pouches are happy with their outcomes. My outcome was not particularly stellar since I still need meds but I am much happier with my pouch with pouchitis than with my colon with UC.

NiceCupOfTea said...
If you had UC, things might have worked out well for you with a jpouch?

Or I might have developed chronic pouchitis and be in as bad a boat as I am now. You go on and on and on about having your life back, but for me my life is in some ways worse than it was when I had Crohn's and a colon.

You are speculating, there is no reality in your statement. If properly treated pouchitis can be well managed indefinitely. I go just as many times as NSSG, I have absolutely no urgency but I do get some discomfort and gurgling, and the rare occasion of difficulty emptying. I am speaking from experience and not from speculation.

Yes, I wish that I didn't have to take medications for my pouchitis but no one ever PROMISED me that I wouldn't need medication after my surgery. My reality is that I need to take medications but like I said previously in this thread living with pouchitis in my pouch is much better than living with UC in my colon.

notsosicklygirl said...
Just curious about opinions on disability and UC...

I can't see living such a limited life, unable to achieve dreams and accomplish goals, unable to support myself and be independent, living off other people forever...

I can't understand why anyone would accept that as their life.

Anyone who feels trapped. Please know that surgery can give you hope for a better future

While I understand you are on cloud 9, I find your statement very insulting and in poor taste. Basically what you've said is that I'm worthless and have no value because I'm ill and on disability. I already have a hard time reconciling with this and I don't need other IBDer's reiterating the marginalized, depleted value of my life. If you were going 20 bloody times a day, you were disabled. A disease is a disability. It's incredibly distasteful that you would attack another IBDer. You chose surgery because you were disabled. Now it seems you're not. So rather than tell me my life has no value, perhaps you could volunteer your time with IBD'ers who in fact are on disability. We need people to run errands, do grocery shopping, walk our dogs, an outing with a safe person, provide emotional support, a shoulder, a distraction and endless rolls of toilet paper. Of course, we need financial support. Wouldn't it be more helpful and supportive if you brought someone soup and started a go-fund me page, rather than tell all people on disability they have no value?


As far as surgery; if it was 100% successful we'd all get it upon diagnosis. There wouldn't be any doubt. There is nothing objective about this disease whatsoever. We can't even conclude what causes it so how can we fix it with one cut of the knife?

I've recently met a 40yr old gentlemen who had surgery ..he hasn't worked in 10 years, empties his bag every 20 minutes even after a sip of water. As a result he's malnourished, and severely anemic. His skin is jaundiced, bags under his eyes, he wears a toque to keep warm. 3 blood transfusions raised his hemoglobin by only 3 points!! This is the most heartbreaking case of IBD I've ever heard. He is suffering and he'd give anything for his damaged colon back.

My infusion nurse told me of her 84 year old MIL who empties her bag 6 times between 11pm and 2 am. Now she has dementia....and forgets, or has trouble with dexterity, resulting in leaks....

My GI has a young 25 year old patient who for the last 3 years empties her bag 8-10 times A NIGHT.

Other's with J-pouches empty up to 13 times a day, have pouchitis etc

I'm happy surgery was recommended and successful for you but you simply never know what you're going to get. Those 3 people and their docs had the best of intentions, hope, surgeons etc.....and yet for whatever reason it didn't work.

Surgery is not an option for me. I struggle daily with the physical and emotional toll of having 2 chronic diseases. I need other IBDer's who know WHAT IT's LIKE to remind me that my disease does NOT define me, that I have value in simply being alive, that if on a horrific 40 times a day I manage to brush my teeth, it was successful; that if it takes me a month to save $20 so I can attend 1 ballet class and pirouette my way on 2 damaged legs and one messed up bowel, that I'm pretty in pink. Those of us on disability do not need to be chastised for not having surgery.

U B Tough said...

notsosicklygirl said...
Just curious about opinions on disability and UC...

I can't see living such a limited life, unable to achieve dreams and accomplish goals, unable to support myself and be independent, living off other people forever...

I can't understand why anyone would accept that as their life.

Anyone who feels trapped. Please know that surgery can give you hope for a better future

While I understand you are on cloud 9, I find your statement very insulting and in poor taste. Basically what you've said is that I'm worthless and have no value because I'm ill and on disability. I already have a hard time reconciling with this and I don't need other IBDer's reiterating the marginalized, depleted value of my life. If you were going 20 bloody times a day, you were disabled. A disease is a disability. It's incredibly distasteful that you would attack another IBDer. You chose surgery because you were disabled. Now it seems you're not. So rather than tell me my life has no value, perhaps you could volunteer your time with IBD'ers who in fact are on disability. We need people to run errands, do grocery shopping, walk our dogs, an outing with a safe person, provide emotional support, a shoulder, a distraction and endless rolls of toilet paper. Of course, we need financial support. Wouldn't it be more helpful and supportive if you brought someone soup and started a go-fund me page, rather than tell all people on disability they have no value?


As far as surgery; if it was 100% successful we'd all get it upon diagnosis. There wouldn't be any doubt. There is nothing objective about this disease whatsoever. We can't even conclude what causes it so how can we fix it with one cut of the knife?

I've recently met a 40yr old gentlemen who had surgery ..he hasn't worked in 10 years, empties his bag every 20 minutes even after a sip of water. As a result he's malnourished, and severely anemic. His skin is jaundiced, bags under his eyes, he wears a toque to keep warm. 3 blood transfusions raised his hemoglobin by only 3 points!! This is the most heartbreaking case of IBD I've ever heard. He is suffering and he'd give anything for his damaged colon back.

My infusion nurse told me of her 84 year old MIL who empties her bag 6 times between 11pm and 2 am. Now she has dementia....and forgets, or has trouble with dexterity, resulting in leaks....

My GI has a young 25 year old patient who for the last 3 years empties her bag 8-10 times A NIGHT.

Other's with J-pouches empty up to 13 times a day, have pouchitis etc

I'm happy surgery was recommended and successful for you but you simply never know what you're going to get. Those 3 people and their docs had the best of intentions, hope, surgeons etc.....and yet for whatever reason it didn't work.

Surgery is not an option for me. I struggle daily with the physical and emotional toll of having 2 chronic diseases. I need other IBDer's who know WHAT IT's LIKE to remind me that my disease does NOT define me, that I have value in simply being alive, that if on a horrific 40 times a day I manage to brush my teeth, it was successful; that if it takes me a month to save $20 so I can attend 1 ballet class and pirouette my way on 2 damaged legs and one messed up bowel, that I'm pretty in pink. Those of us on disability do not need to be chastised for not having surgery.

just curious - why can't you have surgery ?

You very clearly implied that you couldn't live like I do, marginalized and dependent. That sounds like disabled people have no value.

UBTough- I took it the exact same way as you did but knew my comment wouldn't be as nice as yours was so I didn't say anything.