Crohn's Disease Forum » Support Forum » Vent Away » Need to let it out............

08-16-2013, 06:16 PM   #1
Senior Member
Join Date: May 2011
Need to let it out............

I find it so strange some days I can handle this stupid disease other days it just gets to me and I find myself wanting to cry or trying to hide in a corner where no one will ever find me .
-I went to see my Gi on Tuesday, at that point I was doing well so he decided to have me reduce my Entocort from 3 to 2, well I haven't even had the chance to do that, Wednesday I woke up feeling odd, so I didn't risk it, Thursday had pain and didn't decrease and today too. Except today was worse pains and the dreaded D is back. So no decrease for me AGAIN. Going to try to see the doc next week.
-During my visit we talked about how bad I had it and he said not very bad and that he doesn't think surgery or the bag will be in my near future. But does think Imuran might be next for med.
I am so worried about Cancer and living my life with this terrible disease, I am scared that I won't be able to work, to enjoy myself. I still have a good 50 years a head of me or maybe not. . I've read that there have been some deaths regarding crohns, wished I hadn't saw that. Last colonoscopy I had was last September 2012, maybe I am due. Maybe knowing my insides aren't getting worse may help me relax. I know I am pulling at strings. I've recently joined a group on Facebook - some days I wish I hadn't people are talking about how they need diapers to get through their day, and my heart starts to pump really fast and I feel like I am going to take a panic attack.

I know I am overdoing it but these are all the things that go through my mind on a daily basis and more. This D has happened to me twice this month. Last time was with a lot of right sided pain this time the pain is across and the left. I don't know what to think anymore. I feel as if there is no hope. Don't get me wrong I know the stress doesn't help, but I cant stop thinking about it. I am so scared nothing works for me. I know a lot of my problems is IBS related and that my large intestines are so sensitive. But what the hell is wrong with me.. I don't seem to have any luck. Great now I am going from Sad to Mad, acceptance will be next I envy those who are strong, I really hope I can do this.

Sorry just had to let it out.

Finally been told I have Crohns

B12 injections started on 14/03/2013
Astmatic (ventolin when needed)
Paxil 15mg started again 18/09/2013
Synthroid .075mg
Lomotil as needed
Xanax to sleep when needed
Doctor switched me from Salofalk to Mezavant
Not sure why
08-16-2013, 08:09 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi Daunting. Sorry your in this place. I hear everything your saying. The reality is you are strong. It takes strength and courage to battle this disease day in and day out the way you are. It's alright to have "I've had enough" kind of days. It doesn't make you makes you human. Hang in there, we're all pulling for you.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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08-16-2013, 09:36 PM   #3
Senior Member
Join Date: Sep 2012
Location: Lebo, Kansas

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It will be alright. It's ok to have those days. We all do.

Sounds like your GI is working with you that is good and looking to help you manage your crohns to avoid further damage if possible. I'm glad he is taking time to answer questions and trying to help you understand your crohns. It's ever changing and having a GI willing to listen is so important. You are off to a good start.

Remember all those that have managed their crohns or reached remission as well. They have jobs, families, passions they live for... they just happen to have crohns. Anyone of us can't let crohns define who we are regardless of the hand we were dealt.

You can do this. We are in it with you.
08-17-2013, 06:19 AM   #4
Join Date: Oct 2012

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Remember that even if you do deteriorate and end up needing surgery or a stoma, this really isn't the end of the world. I'm just coming up to my sixth surgery which will be for a permanent ileostomy. I've been using incontinence pads since I was a teenager. Honestly, my symptoms are really not all that devastating - they're really not nice, and I'm really looking forward to getting an ileostomy as it will reduce them, but you can work and enjoy yourself even if your worst fears for your disease come true.

How long have you been ill for? I really struggled for the first couple of years to accept that I was going to be sick my entire life, but gradually the thoughts that my future was ruined because of this did fade into the background.

No one can guarantee that you'll never get really sick. Rather than worrying that you will, try to accept that you might, and that that can still mean you are ok. Think of things that you will still be able to do even if you are sick - even if you can't always do very physical activities or be away from toilets for a long time. You can still talk with friends, spend time with family, have all sorts of hobbies you can do even if there are times when you are confined to bed - I read so many amazing books and wrote dozens of essays when I was sick when I was at university. You can come on this forum and help other people with whom you share experiences. If you do need surgery, it's really not a disaster - you can and will get through it.

I don't think reassurance that you might go into remission is always helpful to hear - even though you may well go into remission or your disease may improve and remain at a mild level. But I can reassure you that you may be amazed by what you can still get out of life even with severe Crohn's disease and by your own powers for adapting to unfavourable circumstances. Some of my worst fears regarding my health came true, but it turned out they weren't so bad as I'd feared they would be.

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