Visitor's Crohn's Disease Stories - January - June 2011
Here are some stories and feedback from visitors just like you somehow affected by Crohn's Disease. Some are sufferers, others are family and friends friends. Please feel free to send us your story as well if you are so inlined.
You can also post comments and questions on our Crohn's Disease Forum.
1st half of 2011 contributions
"I'm a 19yr old lad who until june 2010 had led an extremely healthy life, i'd never been ill or taken tablets to get rid of any pain that had come on, then it all changed, towards the back end of May 2010 I started feeling very ill having never been poorly in my life I just assumed it would pass in a couple of days, but it didn't by June I couldn't do anything I was basically getting up in the morning lying on the sofa all day only getting up to go toilet which some days was up to eleven times, or be sick which occured between 2-4 times a day, i went to my G.P who just put it down to a virus that was going round and he asked for a stool sample which came back negative.
By July my parents were getting very concerned because we were due to go on holiday on the 22nd of July. On the 11th my mum deceided that it was time to go to the hospital to get it diagnosed, I was rushed straight into majors given some tablets and admitted for 10days for the first 5days I was a corpse lying in a hospital bed sleeping for 20hrs a day only waking up to go toilet I couldn't do anything i had no energy because I'd lost two and a half stone in less than a month, I was diagnosed with crohn's disease and was put on 500mg of steroids for 3 days to get my weight back up I was also put on pentasa busopan and then 40mg of predisilone which I had to reduce by 5mg a week, I was then put on azathioprine along with pentasa, but I was soon pulled off them because I had a reaction to them which made me vomit everything i'd eaten back up, I'm now on mercaptopurine, pentasa and an iron suppliment.
I'm now at work and doing really well, the only thing that I'm struggling with is getting my head round everything, I've had a couple of weeks off work while it was closed and in that time I became very down, my G.P has said that it's because I have nobody my own age who can imagine what I've gone through and recommended I start using these online societys. I can't thank my family, friends and people at the hospital enough for what they've done for me because I think that without them I wouldn't be here anymore."
Glad to hear you're doing well!
"Hi, I'm 37 and I was just diagnosed with Crohns yesterday - 21st Feb 2011. My symptoms first started mid-October 2010 when I started to notice a very big change in my bowel movements and severe pains in my abdomen. I went from going to the toilet approx 5 times a day and maybe once at night(for No 2's!)to 30-40 times a day and 10-15 times a night, which made me grumpy and very irritible and short tempered and worn out.
I kept going to my local GP and because when I was 14-15 years old I got told I had IBS my Dr sent me away and told me to get on with it as it's my IBS. I kept on and on at my Dr visiting him every week or so, but because I wasn't getting any satisfaction from him I decided to make an appointment with the female Dr at my local Dr's hoping she would be more understanding. My appointment was on the Friday, but just before that on the Wednesday I started to notice small amounts of blood from my back passage - that's when panic set it.
I waited until the Friday to get seen my the female GP in my Drs as my symptoms didn't worsen so I hoped for the best. When I went on the Friday she examined me fully and told me I had a skin tag on my back passage and a small pile - relief - or so I thought! She gave me pile cream and I started putting that on straight away. However, on the Saturday evening having gone to the toilet - I went and lost about a small cup full of pure blood from my back passage and then went again about 10 minutes later for the same thing to happen.
That's when the real panic set it - I WAS TERRIFIED! I tried to ring my Dr's to get an out of hours emergency appointment at my local walk in centre. When I first contacted them the person I spoke to wanted me to put the phone down and ring 999 for an ambulance - something I didn't want to do after all I only had a a pile - didnt I? And my thought was that had probably burst so I wanted to see someone for re-assurance. I ended up being put through to a locam Dr and speaking to him about this and again was told the pains were from my IBS and the bleeding was from the pile, however I said I wanted to see someone to get re-assurance that the blood was from the pile and nothing else.
I went to my local walk in centre to be totally and utterly fobbed off by the local I saw and then had to wait until the MONDAY to go and see my own GP. On Sunday night I didn't sleep as I was going to the toilet every 15-20 minutes - it was worse than having the runs - it was bad!! When I went to my GP on monday I had to beg him to do something for me and to send me to see someone asap as I was really, really concerned.
That's when on Monday 29th November 2010 I was admitted to Fazakerley Hospital in Liverpool (Merseyside, UK) and that was when I first heard that they think I had Crohn's disease, but needed to carry out an endoscopy to make sure and strange as though it seems - no pile! I had the endoscopy on the Thursday and in them meantime I was kept in isolation for 4 days only to be moved to a ward after I'd had the endoscopy. I was then released to home on the Friday to come back for my results in a week or so. I went back over 2 weeks later for the results and was told the endoscopy was inconclusive and would have to have the colonscopy for which I had to take 3 days off work for & it wasn't all that bad an experience - honestly!
When I went back for my follow up appointment they said that they were more certain that it was crohn's, told me I had to have a Barium meal and put me on Pentasa 500mg 8 tablets a day. The Pentasa relieved some of my symptoms and I do have good days and bad days. Yesterday I was stared on Prednisolone (moon face alert! But at least my skin will go lovely as I was on these back in July 2009 for Irisis) and Azathioprine 2 x 50mg and 1 x 25mg a day & 2 calcium and vitimin D tablets a day. That's my story so far as I'm new to this. Ann
Hope everything is going OK for you Ann! Thanks for sharing.
"Hi, my name is Miranda. I was 20 years old when i was diagnosed with crohns,after a colonoscopy.the dr. came in to talk to my mom and said,well good news she doesn't have colon cancer..but she does have crohns and is going to require alot of treatment.I was put on prednisone and antibiotics,and azathioprine.
About 1 month later i found out i was pregnant and had to stop all treatment,to enssure that i would have a healthy child.well,time went by with no treatment and at the end of the 8TH month period of my pregnancy I started to develope a lump on my rectum,that was the worse pain i can describe!!it busted and started draining this nasty stuff..I went into labore 3 weeks early and had developed preeclampsia.I had my son who was thankfuly very healthy, I hemmraged after he was born,and 3 days later had to call an ambulance b/c i woke up unable to breath(scary!)they took me in and did test and said i had developed something called cardiomyopathy(i almosted Died!)i was basicaly drowning from pulminary edema.
I was in the hospital for a week after his birth.i hasd ignored the symtoms of a fistula b/c at the time i had nit done much research on the disease and didnt know what was causing that nasty discharge.yuck!I finally got better and was released from the hospital.I went stait home and called my gastro,dr.for a follow up app.I went in and told him the proublems i was having and he said ,i need to take a look .it sounds like you have a ano rectal fistula.and sure enough thats what it was. he sent me to a genneral surgeon and i had a fistulotomy/with 2 seton drains in place! it was the most pain i had been through scince childbirth!I was very weak.the dr. put me back on azathioprine and humira and prednisone!I lost 60lbs after i had my son but thanks to prednisone i now weight 200lbs!!yuck!I am well though so thats the most important thing.
I had to have a 2nd fistulotomy a year after the first 1 but it wasnt near as bad as the first!I have a great team of dr.s that take great care of me!!i owe them great thanks.I am currently taking 150 mg of azathioprine..no pred!!and humira!
I am the healthiest i have been in a while although i am very fatigued all the time..it has taken a huge toll on my marriage and my life ,but my son brings mr all the joy!!I still find my self searching for restrooms everywhere i go..b/c you never know what a day might hold."
That's quite a story, Miranda. Thank you for sharing.
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