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UC is ruining my life and I am "sick" of it

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Ulcerative Colitis
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Posted 6/3/2013 8:30 AM (GMT 0)
Hi Everyone

I am a 24 year old engineer - I was first diagnosed with UC when I was 16. Since then I have been taking 6 x 400 mg Asacol and a probiotic daily.

When I was first diagnosed with the disease I just ignored it and lived an almost normal life. But since then things have just gotten worse. Now I have this constant fear about needing to go to the bathroom all the time. I make excuses to not go out with my friends because I have this stupid toilet phobia in the back of my head. I actually watch TV and movies and think "wow how amazing is it that the character can go out and to all these places without needing to use the bathroom". This disease is bringing me to my breaking point. During University I remember stressing more about needing the toilet in the exam hall instead of the actual exam.

I would give anything to be able to forget about the toilet and to be able to go out without taking Immodium as a Just in Case measure. I want to be able to go out and see people. I want to be able to play sports again. It feels like Im 24 and my life is already limited.

Does anyone out there have any advice for me? I want to actually have a life now. If anyone else has this toilet-phobia can they tell me how they got over it and how they regulated their BMs?

Posted 6/3/2013 9:00 AM (GMT 0)
I'd suggest you get together with your GI. You need to be on some medication. Asacol is good but apparently it's not keeping your flare down.

Uceris has helped me gain control over my flare. I was in a very bad flare last year including pooping my pants and having to wear diapers. Now I have normal stool, no symptoms. I maintain my condition with Imuran.

Have you also looked into diet modification?

Good luck and get better.
Posted 6/3/2013 11:30 AM (GMT 0)
Poor thing, this disease is no fun at all is it. The fear of what might happen is often worse than the condition itself, being constantly on edge about every little twinge in your belly.

If your UC is under control you wouldn't be having these worrying issues, do like Andrea says and get your GI to sort some other medications. Life is precious and too short, I was young like you when diagnosed (14) and i am now 35.
My past 10-13 years have been dominated by worrying about UC symptoms and being restricted in what i want or can do.

I have exhausted all available medications now and have requested surgery as a last resort. It was the one thing i didn't want and now its the only thing i want because i have forgotten what its like to have a normal life not worrying about going out, having accidents, finding a toilet, panicking, worst still being a man who sometimes wears nappies under his clothes due to anxiety and worrying about messing in public.
Posted 6/3/2013 12:22 PM (GMT 0)
Raptor,

Welcome to the forum.

UC sucks that's for sure.

I think that when you can get to a point where your disease is under control, you will feel much more in control of your life and your body.

So my suggestion would be to take the necessary steps to get you to there, speak to your doc as Andrina suggested.

I can tell you that when I first started out with UC, I felt the same way you did. But then I started doing lots of research, and added some things into my regimen which made quite a huge difference in symptoms, and that made me feel like i had control over this disease and my body.

I added: slippery elm powder, l-glutamine, ensured Vitamin D3 were high, probiotics, and diet modification as in gluten and dairy free - and that reduced my severity of symptoms, and number of BMs by 80-85%. And then wheen I added LDN, low dose naltrexone, I went into remission, which I have been in since.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity. I hope you feel better soon and get this under your control.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 6/3/2013 12:23 PM (GMT 0)
Hi and welcome.

Are you currently only on Asacol? How bad are your symptoms? It sounds to me like they aren't all that bad but I could be misreading things.
Posted 6/3/2013 12:46 PM (GMT 0)

Raptor22 said...
Hi Everyone
I am a 24 year old engineer - I was first diagnosed with UC when I was 16. Since then I have been taking 6 x 400 mg Asacol and a probiotic daily.

When I was first diagnosed with the disease I just ignored it and lived an almost normal life. But since then things have just gotten worse. Now I have this constant fear about needing to go to the bathroom all the time. I make excuses to not go out with my friends because I have this stupid toilet phobia in the back of my head. I actually watch TV and movies and think "wow how amazing is it that the character can go out and to all these places without needing to use the bathroom". This disease is bringing me to my breaking point. During University I remember stressing more about needing the toilet in the exam hall instead of the actual exam.

I would give anything to be able to forget about the toilet and to be able to go out without taking Immodium as a Just in Case measure. I want to be able to go out and see people. I want to be able to play sports again. It feels like Im 24 and my life is already limited.

Does anyone out there have any advice for me? I want to actually have a life now. If anyone else has this toilet-phobia can they tell me how they got over it and how they regulated their BMs?

Do you take any rectal medication? The asacol and probiotics are key and the mesalamine rectal meds are HUGE for symptoms as the rectum plays a massive part in urgency/nausea/"crap-fart separator". Asacol sometimes has a problem releasing all the way down there depending on where your UC is. Try it out. I did for a little while but i think my symptoms were to severe at the time and am planning to give it a try again.

Someone posted a link to a Q&A with some expert GI's and a lot of it revolved around the rectum and mesalamine medications. try and read it. good luck and stay up.
Posted 6/3/2013 3:46 PM (GMT 0)
Insofia- where do you get ldn?
Posted 6/3/2013 3:47 PM (GMT 0)
Raptor- I am also 24 and feel the same way as you. I've only been diagnosed a year but I can't stand UC. I feel all the things you are saying too so don't feel alone. It's a jerk of a disease. Hopefully we can get better soon
Posted 6/3/2013 6:39 PM (GMT 0)
I don't want to appear as a jack@s$, at the same time, I would recommend you to spend some time browsing through forum. This place is loaded with information and if you keep notes as you go through the forum threads, you will get so much of information that you will start making decisions for yourself.

As you will notice, there is no yardstick for this disorder. So trial is the only option. When I was new, I spent almost 2 months browsing through and tried out a ton of things. I still do. Knowledge is power and it will give you pretty good handle on your disorder.



Just to answer your question on phobia quickly, did you note that many of us take Bentyl? It slows down your peristalsis and you are good to go for 3 to 8 hours, depending on your flare situation.
Posted 6/3/2013 7:07 PM (GMT 0)
Raport welcome to Healingwell! I feel your pain. I was diagnosed at 16 and I'm a 22 year old engineer. I remember one of my finals I had to not fully finish an exam because I had to go and was to scared to ask if I was allowed to go. We all wish we could not have to worry about the bathroom fear.

Get together with your GI. You need an update for your meds.
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