I hate all of this, why does it have to happen to me :( help!

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Firthy
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/23/2007 9:09 AM (GMT -6)   
Im 17 years old and was diagnosed with UC in june 2006. It started off in the lower left part of my colon and wasnt severe, i was put on asacol (6 a day) and two asacol suppositories at night. This cleared it up nicely for about two weeks, then my symptoms suddenly started up again, i was put on predsol enemas at night and was on the asacol medication. I used these for two weeks and they worked like a miracle, but the day after i stopped using them my symptoms came back. I went back to clinic and they put me on stronger predfoam rectal foam, and prednisolone tablets aswell as asacol, they replaced the asacol suppositories with predsol suppositories. My symptoms didnt die down and after a few weeks on them i went back to clinic. They then put me on balsalazide (9 a day), prednisilone (6 a day, then raised to 12 a day), rectal foam (at nigt), suppositories (1 in the morning), i was like 25 tablets a day. After a month on them, my symptoms were still really bad and i couldnt cope. I was admitted into hospital around three weeks ago and was put on IV hydrocortizone (400mg a day), i also had become anemic because i had lost soo much blood, i was given 3-4units of blood. After a few days on hydrocortizone and there was no change in symptoms, i was put on cyclisporin for 4-5 days. this started to make a difference but i was still going toilet 10-15 times a day. At this point they did another sigmoidoscopy and they could only go so far because he didnt want to puncture my colon. My UC had spread further than he could go with the camera. I was told this was quite rare. The next day a surgeon came up to see me, he looked at my notes and told me i had steriod resistant colitis and told me i would need surgery, he explained the operation to me and what i would have after. He wasnt supposed to be operating but he came in the day after to do my operation. I had most of my large intestine removed and had an ileostomy and now have to wear a stoma bag on my belly. In the first 24hours after the operation i felt a million times better than what i did before the operation. I was discharged from hospital last wednesday, a week after surgery. I am still very achey and weak but feel better and on the mend. It has been a very emotional time for me, i dont like having a stoma and a stoma bag but its better than having UC.
 
I have always asked myself "why me"? and have always wanted to know the cause of UC. Nobody in my family has ever had anything like this. All the stories i have read about others peoples UC, they have been very fit and active and had a healthy diet and do regular or excessive excercise, im a footballer and have a very healthy diet, never smoked and never done drugs, always been active from a young age. Ive played football since i was 5, and played at a high level since i was 11.
 
I hate all of this and i cant get my head around it :( i dont know how to take this, its all happened so fast an gets me down really bad. Because i was really ill the surgeon couldnt do the two stage surgery, so to be reconnected i have to have three stage. I hate hospitals, operations, and all that and dont want anymore operations but hate having a stoma bag. When i read about the J-Pouch surgery, it says the pouch is made from the small intestine but my surgeon left about 8inches of my large intestine :S does anyone know why he did this? I have no idea. Please help me i really dont know wat to do. Everyday feels like a struggle.
 
Thank-you for reading my story and please leave me a comment back with your story and answers.

golfer76
New Member


Date Joined Feb 2007
Total Posts : 8
   Posted 3/23/2007 11:20 AM (GMT -6)   
I had a very similar situation.  I started having symtoms of UC in May of 2006.  Had a colonoscopy the end of July to confirm it.  My doc tried asacol, among many, many other drugs before turning to predisone in October.  My sister got UC in 2005 and a couple tough months after she got it, she was able to control it only with diet.  So I tried the diet too, but by mid November I was not leaving the couch except to run to the bathroom.  I was going 20-25 times a day.  (I am now 30 years old, very healthy and active before all of this.  I have never been overweight and have always had a good diet.)  Went to the hospital on December 1.  My doctor sent me after he determined I was anemic, malnourished and looked like crap!  I had gone from 165 lbs to 112 lbs since May.  I was in the hospital for a week with a worthless doc.  He only ran a couple of tests on me and couldn't find anything else.  Well, the on-call hospital doc decided to run some other tests on me.  She found a hole in my colon and a couple hours later I was in surgury.  I had an ileostomy and also now have a bag.  It got pretty frustrating at times not feeling like I was getting better from day to day.  But I looked at it from a week to week improvement was somewhat reassuring.  9 weeks post op I played 72 holes of golf in 3 days (walking every round).  It was an exhausting but encouraging trip.  At that point I knew I was going to be okay with activity.  I have three boys that I wrestle around with, I play basketball, baseball and golf.  You being a lot younger should get back to your active self a lot sooner than I did.  It's been 3 1/2 months since surgury and I feel nearly 100%.  Everytime I think about how it sucks to have a bag, I remember that it's a lot better than how I felt before and I don't have to run to the can 20-25 times a day!

bearsmummy
New Member


Date Joined Feb 2007
Total Posts : 10
   Posted 3/24/2007 9:08 AM (GMT -6)   

Hi

Read your story and is nigh on identical to my own.  Likewise, no-one in my family has UC neither had they heard of it!

I had my surgery 3 weeks ago and have an ileostomy.  It's not the greatest thing but such a relief not having to dash to the toilet at the most inconvenient moments. 

I am in the UK, the doctors have no idea what causes it here either but do try the same medications - hydrocortisone, cyclosporin, etc, all of which I had before my op.

On the question about why your surgeon left 8" of your large intestine, it may be that it was inflamed - ulcerated.  Just an idea??

My operation is in 3 stages.  My rectum was not removed in operation number 1 due to inflamation.  To remove something that is inflamed is high risk.  The inflamation can pass on infection to other areas causing for example, blood poisoning, etc.  I am using suppositories currently to establish remission in this area so that operation number 2 can be conducted, my rectum be remove and a j-pouch constructed.

Hope this helps.

Amanda x


Pentasa Suppository 1 each night
Predsol Suppository 1 each morning

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