Choosing to give up control

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Ihatecrohns

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  1. Incontinent
I had an appointment with my specialist yesterday to talk about my Crohn’s which is causing severe incontinence right now.

The medication is super scary and it makes you gain weight and increases risk of cancer, makes it that you can’t drink at all, have to be careful in the sun, sleeping problems.

He told me if I keep putting off treatment my incontinence will be irreversible.

Here’s my dilemma and what I’ve decided this medication is going to hinder my life more than wetting and messing myself does as well as cramps therefore I’m choosing to let my incontinence get worse apparently eventually I won’t get any urgency I’ll literally just use my nappy without knowing.

I’m embarrassed and I’m annoyed that this is happening but the side effects of the medicine just seem worse than the illness

Guess I’m about to say goodbye of hope to ever use the toilet again.
 
I hate meds the side effects always seem to make things worse I hope they give you another option hope everything works out for you
 
I have all but resolved myself to the life of incontinence bladder wise. I am with you on meds they freak the hell out of me with the disclaimers which you need a lawyer to decipher DANG! Also the phobias and the reactions to the knock out stuff also the non guarantee it will fix it He says less than 40 percent success rate I say to hell with that!
 
I'm sorry this has happened. I do understand your concern. It seems like there are a number of medications being advertised, that also have terrible side effects. I'm not sure what I'd do in your situation. There are no easy answers. I've know some people who chose to die rather than go on kidney dialysis. Sometimes we are given choices in the medical world that we don't have the ability or will to make these kinds of decisions. The worst one I had to make was to take my wife off life support. I told the doctor that no one should ever have to make that decision. Sometimes life really, really sucks. If you've ever seen a TV show or a movie where someone is screaming and crying in a hospital hall after hearing the pronouncement of death, that was me on October 19th.
 
Ihatecrohns said:
I had an appointment with my specialist yesterday to talk about my Crohn’s which is causing severe incontinence right now.

The medication is super scary and it makes you gain weight and increases risk of cancer, makes it that you can’t drink at all, have to be careful in the sun, sleeping problems.

He told me if I keep putting off treatment my incontinence will be irreversible.

Here’s my dilemma and what I’ve decided this medication is going to hinder my life more than wetting and messing myself does as well as cramps therefore I’m choosing to let my incontinence get worse apparently eventually I won’t get any urgency I’ll literally just use my nappy without knowing.

I’m embarrassed and I’m annoyed that this is happening but the side effects of the medicine just seem worse than the illness

Guess I’m about to say goodbye of hope to ever use the toilet again.

What is the name of this medicine?
 
It’s Azathioprine we talked about it last year but now that it’s started getting worse they want me to definitely start it but I just don’t want to it’s too scary.
 
Yeah I’ve got enough problems in my life that I think I’d prefer wearing nappies and dealing with stomach issues than I would with the side effects of this, I’ve gotta have blood tests every week with it and it’s like it’s replacing one condition with another :(
 
Yeah I would rather wet and/or mess myself than have a higher risk of cancer.
 
Yeah it’s hard my mum wants me to take it but my partner doesn’t
 
Ihatecrohns said:
I had an appointment with my specialist yesterday to talk about my Crohn’s which is causing severe incontinence right now.

The medication is super scary and it makes you gain weight and increases risk of cancer, makes it that you can’t drink at all, have to be careful in the sun, sleeping problems.

He told me if I keep putting off treatment my incontinence will be irreversible.

Here’s my dilemma and what I’ve decided this medication is going to hinder my life more than wetting and messing myself does as well as cramps therefore I’m choosing to let my incontinence get worse apparently eventually I won’t get any urgency I’ll literally just use my nappy without knowing.

I’m embarrassed and I’m annoyed that this is happening but the side effects of the medicine just seem worse than the illness

Guess I’m about to say goodbye of hope to ever use the toilet again.

Sorry you are having to go through this and I hope your Crohn's resolves itself. I know of a medication used off label Naltrexone that is helping people with multiple auto-immune disorders and Crohn's is listed. It's used in a very low dose and does not have much in the way of side effects. My wife just started it and she is having results, finger crossed. Here is an abstract https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

The NIH is now running a trial.

You will need to find a doc willing to prescribe. My wife's doc refused but it was easy to find someone.
 
I’ll take a look thank you <3
 
With me being incontinent, the anti "Pee Your Pants" medications are worse than being incontinent.
With my older male BPH, I am not popping pills to shut off my pee-pee maker and making it hard to pee.
 
I know what you are going through. I have severe OAB and IBS, which causes both urinary and bowel incontinence. I've been given all manners of meds and even took some years ago. The side effects, in my opinion, were not worth it. They didn't even reduce my incontinence episodes so what's the point. Early onset dementia has been linked to OAB meds. No thanks! Both my current doctors (primary care and specialist) are supportive of me just wearing protection and managing my stress levels and diet.
I'm sorry this is happening to you at your age and hopefully you can manage. Having to wear diapers 24/7 can be hard on people facing sudden incontinence problems. However, wearing diapers after a while becomes natural and no one is the wiser.
 
Spaz said:
I know what you are going through. I have severe OAB and IBS, which causes both urinary and bowel incontinence. I've been given all manners of meds and even took some years ago. The side effects, in my opinion, were not worth it. They didn't even reduce my incontinence episodes so what's the point. Early onset dementia has been linked to OAB meds. No thanks! Both my current doctors (primary care and specialist) are supportive of me just wearing protection and managing my stress levels and diet.
I'm sorry this is happening to you at your age and hopefully you can manage. Having to wear diapers 24/7 can be hard on people facing sudden incontinence problems. However, wearing diapers after a while becomes natural and no one is the wiser.
Yeah medicine isn’t perfect and it seems quite often the side effects are worse than the illness itself.

Yeah it is kind of hard, diapers are something I’ve dealt with my whole life but most of the time when flare ups weren’t bad I could get away with just pull ups.
Now that my stomachs gotten worse and I’ve started having bladder issues too I’m having to wear full diapers 24/7 which is taking some getting used to. It’s hard not feeling a bit embarrassed or self conscious when I have a big accident in a public place I just feel like everyone can smell or something and I feel like people are judging me when they see me using a disabled toilet.
To most people you probably can’t tel there’s anything wrong with me so I feel like people think I’m rude using the disabled bathroom :(
 
Ihatecrohns said:
To most people you probably can’t tel there’s anything wrong with me so I feel like people think I’m rude using the disabled bathroom :(

Same here, but I use it all the same and I don't care who comments about it. Have you ever tried Nullo? I have about 2 bms in my diaper a week (sometimes more and sometimes less) and I've thought about taking this stuff for years. It pretty much eliminates the smell, though I hear the chlorophyll in it turns your poop green.
 
You are certainly on the horns of a dilemma. The treatment sounds or can be worse than the disease itself. It seems with medicine the only guarantee is that there is no guarantee. In my dealings with the medical industry is the only guarantee is the Dr. and the drug companies get rich whether you get better or not.

I know you have considered this for some time. I know that I have to take several medications and when I read the "potential" side effects it is scary. However, the majority of time I have had zero of the side effects and all of the benefits. I have only discontinued one urinary med and that was due to the potential for memory loss. In my profession I can not risk that even for the short term let alone long term. So on that one I have rolled the dice. Everything else I take.

I will say this out-loud as I know you have considered it already, but perhaps you could take the drug for a trial period; see if it helps you and see if you get the side effects. If it does not help, or helps somewhat and you get some of the side effects you can always stop. Personally, at 21 I would not just resign myself to total incontinence for the rest of my life. But that is just me. I would try and see what happens.
 
Being back in diapers at at my age 55 is easier to accept then if it happened at a younger age but after wearing diapers 24/7 for almost 4 years I have found it really is not that bad and have adapted to my new daily life.

Self confidence and having proper premium diapers goes a long way in helping to deal with incontinence issues even bowel accidents in public, I have had more then a few unexpected bowel movments when out and about in public I just excuse my self and go get cleaned up and changed right away. Plastic pants will also help contain the smell for a little bit to give you a bit more time to get to the bathroom.

Changing your diet and avoiding certain foods helps reduce bowel,movemnt smells as does newlo as some one else redommended but I am not sure if it’s designed to be continually taken. only you can deside if you can handle being diapered 24/7 and skip the meds. I choose diapers over meds and have no regrets even if I was as young as you I would probably make the same decision after doing the same research I did when my issue first started.

What ever decision you make try not to feel pressured into doing something you really do not want to I would bet if the people pushing the meds had to deal with the possible side effects they would probably pick the diaper option as well as other then the expense its the safet choice.
 
I gave up on medication to curb my incontinence and just rely on nappies.
 
Ihatecrohns said:
. . . I feel like people are judging me when they see me using a disabled toilet.
To most people you probably can’t tel there’s anything wrong with me so I feel like people think I’m rude using the disabled bathroom :(
A shirt that says, "Not all disabilities are visible," helps.

So does learning to say it to judgmental people.
 
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