Not fun

by Pete
(Attleboro, Mass., US)

For a while I had stomach pains and I would just tell myself it was something I ate or ignore it the best I could. This went on for a couple of months. Then one day at work I noticed blood in my stool and that scared me and I knew something was wrong, but stuborn me didnt do anything about it till it got to the point that I couldn't move I was in so much pain. I went to the doctors and they didnt know what was wrong. They said I was anemic and had a stomach bug. So I went with that for a couple more days and the pain got to bad and I ended up in the hospital. They ran their test and came back telling me I had Crohns. Telling me that I had to watch what I eat and they started me on Remicade and on some kind of steroid. This was June of 08'. The remicade worked great till Aug. they tryed giving me a double dose of remicade to see if it would work in a stronger form, but it didnt work. But at this time I only had pain every once in awhile. They put me on asecol and kept me on the steroid. Come Oct. 08' the pain was to the point that my doctors took me out of work and basicaly told me to stay in bed. I was in and out of the hospital for the remaining of the year. I went into the hospital on the 4th of Jan 09' in severe pain, they rushed me to Boston and they ran tests and noticed that the Crohns had eaten a hole through part of my intestines and I was leaking internally, they had to do emergancy surgery. When I woke up I had a colostamy bag and a mucus fistula. Also a huge opening down my stomach where they went in to remove some of my intestines. At first they said they would be able to reverse it, but the Crohns just got worse and worse. In a matter of 5 months after the first surgery I had another 6 to remove abcesses and fistulas and they also put in drains. Things were going ok for the rest of the year up till Oct 09'. I had been on Humira and asecol. I had another major surgery to see if things could be reversed, but things couldnt be and what they had to do was remove more of my intestines and they took out all the drains leaving open wounds to be packed. When I woke up from this surgery I only had the colostamy bag and they had removed the mucus fistula. They removed all of my intsetines up to my rectum. Leaving only an inch or so left inside and if I wanted to have that removed they told me it would be like a hemroid surgery. So I was in the hospital or a rehab place from Oct 09' till March 10'. Due to complications with everything. Here I am now Aug 10' my stomach wound has healed completly, but the wounds from where they had removed the drains still needs the attention of a visiting nurse that comes everyday. I'm back on Humira and a boat load of pain meds that they say others would be knocked out by. I still have pain in the perirectul area, but not much as far as stomach pains from Crohns untill lately. I have notice blood again in my(stool) colostamy bag when I empty it and slight pains in the stomach area. I'm almost sure I cant handle going through all of that again, so I hope its nothing. They are going to scope my stoma to see what if anything is wrong. This all started when I was 26/25 and I'm now 28. The depression I go through is horrible. I'm bed ridden and have been for two years now. My body is severly deconditioned (I weighed 180 now 130) and I have lost almost all muscle mass in my body. I've lost my g/f and my independence, had to move back home with my dad. I sit in bed everyday thinking to myself that I'm missing what should be the best years of anyones life and I cant do anything about it. People continually tell me to keep my head up and be strong, but one can only do that for so long with the same out come. So now I just hope things somehow work themselfs out and I can get back to a semi normal life soon. Crohns is a nasty disease and I wouldnt wish it upon anyone. I feel for everyone that has had any kind of experience with Crohns and hope someday they will figure out what causes it and how to stop/cure/prevent it from happening. On a side note I might not have had Crohns for as long as others have, but I've been through alot. So if you have a question or need someone to talk to I'm always here. I would put my email, but not supposed to

Comments for Not fun

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Not fun NEW
by: Annette Young

Hello,

Thank you for writing such a heart-felt post. I am sure many Crohn’s sufferers will be empathizing with you at this point and feeling that there is someone out there who is going through the same things.

Crohn's is such an aggressive disease and once you are in the grip of it, it can seem like it is going to last forever. Sadly there is no known cure for this disease yet, and this can affect you on a psychological level too, because you can become depressed and feel as if the world is against you.

I always say that Crohn's is a secretive disease and by this I mean that not many people want to share their stories with others and because there is often a tendency for anyone with Crohn's to become more introverted, and those without the condition really do not understand just how horrible and painful the condition can be.

You are not alone in your experiences and many people suffer for years without much respite and then all of a sudden, almost with no reason, the condition seems to go into some sort of remission and life can take on some degree of normality.

I know this has not happened for you yet but fingers crossed that you will get some relief. I know you are living in some kind of hell at the moment and it is important that you have a good support network around you. You are staying with your father and I am sure he understands your situation, but it would be good for you to have external support too as well as to provide support for others.

This forum was set up to help others with Crohn's disease and communication really can make such a big difference, from those who believe they may have the disease, to those who have been diagnosed.

I genuinely hope that life becomes better for you.

Best wishes,
Annette
It can be so hard sometimes...
by: Vanessa

Hello
I am 30 years old and since A couple of years, It is hell for me. I got 4 surgeries this year but now I guess I am doing better. I spend a lot of times in the hospital since Feb and I know what it is to be fed up of all this. I will have another surgeries next year and I really do not want to get through that again but hey no choice...
Anyway, I wanted to tell you that I would like it if we could comunicate by mail. It is nice to talk to someone who understands us sometime...
My name is Vanessa and my email is vanmtl1980@yahoo.ca
LIZZIE
by: Pete

The thing with the Humira is that it almost completely depletes your immune system. So you have to be carefull around anyone with just a common cold cause even that will reak havoc with your body on humira. While I was on humira my Crohns wasn't really an issue. I was taken off of humira becuase of the major surgery in Oct. so that my body could heal and better fight off infections. I was recently put back on it, but I am having some stomach pains now. I think this is due to the ammount of time that I was off of the humira. I'm not sure of course, but I hope thats the reason and that it will continue to do its job and the pains will go away. I don't know what other treatments there are out there. I'm sure there is alot I havent heard of and have nothing to worry about. Best of luck with your treatments. Hope you dont end up having to have the surgery.
Not Fun
by: LIZZIE

Hi i really feel for what you have been through i had to spend 3 mths in hospital last summer away from my 2 children that was torture, then went to theatre at the end of it all expecting a colostomy but fortunately they didint do it, but since then i have changed hospitals for a second opinon and i need all my colon removing and there is no way that has got in that state since last october, i am trying humira prior to the surgery havent started yet but i am worried about it, does it help?
Plaese keep positive i know it is hard but ive been told of many people try and rule it not let it rule you xxx

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