1st time

Ive never participated in any online forums before. Im a male in my early 40s. Ive tried many diffrent medications. A couple years ago my GI doctor said we had only 2 options left for medications. A experimental trail or Tysabri. Me being a results driven person I chose Tysabri (not working either). Latley I started having accidents. Im so embarrassed. I havent told my wife or family. I cant continue like this. Gotta find a way to fix it or hide it. Does anyone have any ideas?

Hello and welcome to the forum.Have you been in touch with your GI and told him about your present symptoms ? If not,I really think you should.Embarrassment should be listed as a medical complaint as so many people suffer from it needlessly.IBD problems are very common but because no-one talks about it,those who don't suffer from it have no idea how stressful and debilitating it can be.Please either see your family doctor or your GI soon.Write down a list of your symptoms and dates,and take it with you.Show your wife your above post if you can.I'm sure she will be more understanding than you give her credit for.Keep us updated,because there will be others who will empathise with you.Good luck.

Welcome to the forum. I am sorry for what you are going through. I agree with scottsma.

Yea if you can give your GI a call. I have had accidents in the past. I only say this on the forum because people understand, my most embarrassing accident happened when I was at work. I had a full fledge BM in my scrubs at work!! No way to hide it. Just pure embarrassment and shame. It was during a flare and my co workers understood but I hope this embarrassing story makes you feel a little better knowing others, like me have had major accidents in public! Best of luck!

Ian_H said:

Yea if you can give your GI a call. I have had accidents in the past. I only say this on the forum because people understand, my most embarrassing accident happened when I was at work. I had a full fledge BM in my scrubs at work!! No way to hide it. Just pure embarrassment and shame. It was during a flare and my co workers understood but I hope this embarrassing story makes you feel a little better knowing others, like me have had major accidents in public! Best of luck!

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That happened to me too.

Have had at least one accident in the past

Here too.. I struggled a lot in college before I knew I had crohns. When i had my fecal transplant I had to wear a diaper home.

JaimeM said:

Here too.. I struggled a lot in college before I knew I had crohns. When i had my fecal transplant I had to wear a diaper home.

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Not working anymore but when I was my boss strongly suggested for me to wear an adult diaper.

My only diaper moment had nothing to do with crohns won't go into detail

I think you should confide in your wife and GI.
The only advice I have is that when my daughter is flaring her symptoms are helped by drinking most of her calories from a meal replacement like ensure or boost.

when your tired of ensure/boost, have a few cans of devon custard in your pantry!! not too much other choices when solids will not pass. i called it my baby food, that will work too.

I sympathise with you about the accidents - I've had a year of bad incontinence, with a couple of embarrassing incidents in public, and I was beginning to be afraid of leaving the house. Good quality incontinence products helped a bit, but unfortunately they can't disguise smells. Now I'm on steroids and they're helping at the moment, they've given me my life back these past couple of months and I pray it continues, but I see from your post that you've tried most medication? I guess surgery is the next stage?

for what it is worth, try cholestyramine. I am on Olestyr, orange flavoured, light powder that I mix with a bit of water, stir it up good, then add some OJ, to make it more palatable. one package a day, works miracles for me. wish I was on this stuff years ago.
after two terminal ileum re-sections, i had troubles with frequency and urgency, now i am down to one rather firm bm/day = amazing fix, so conclusion is have bile salt diarrhea.
it can lower your cholesterol levels as well

RickS said:

when your tired of ensure/boost, have a few cans of devon custard in your pantry!! not too much other choices when solids will not pass. i called it my baby food, that will work too.

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When I was on TPN, I was wishing for baby food , as silly as that sounds.

My GI gave me Olestyr to try as well and suggested immodium. I have yet to try cause I am terrified of having formed BM. It has been over 10 yrs since my last one. I had a full colectomy so pretty sure it's almost impossible for me to have a formed bm but may be worth a shot. I also have a seton at the moment due to a fistula so I often don't make it to the washroom on time. I don't make a full mess but some does slip through and there is no holding onto it at all. When I have to go I have to go!! Public places terrify me. Anyway...just to say it happens to some of us as well. It is embarrassing but we have to deal with it. Try and always have a change of clothes or at least underwear nearby and flushable wipes for easy cleaning. Ask about Olestyr or Immodium or something similar that may help you. Good luck.