My Story ( Long )

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Joined
Nov 7, 2010
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Hi Everybody,

Im new to this and would like to tell you my story.

Ive just turned 26 and my problems started around nine / ten years ago when i was in school at first it started off light. I went to my GP several times and was told i had IBS as i was so young i thought ok i have IBS at least now i know. Over the years i decided to keep my little problem to myself as i was very embarrassed sometimes i could go to the toilet 10 plus a day but as i taught that was normal for IBS so i just got on with things. Then when i was around 22 i was working in a job that i loved but i started to feel very ill. I was in a lot of pain could see blood in my stools, so again i went back to my GP and was sent for some more tests, i had the cameras up and down loads of bloods and an ultrasound. Nothing really showed up but i had an infection in my bowel called helicobactor i was given antibiotics and told its all normal for IBS. Again i tried to get on with my life but was finding it very hard as i was loosing weight and people would comment on that and would ask why i was so picky with my food. Most times i just fobbed people off and didnt want to go into things with them. Most of the time i was in a lot of pain and would hide it even from my parents as i got enough stick for my toilet habbits. Then i changed jobs and just kept my IBS to myself in this job i got premoted to a higher role it was stessful at times, but as my role was very important the more i got sick the more i tried to hide it. Soon i was taking quiet a few sick days off and would lie and say it was all sorts of things just because i was so embarrased. Then one day in the kitchen a worker made a comment on how little i ate and how thin i was so i just said i had some problems going on and was in a lot of pain when i ate. She felt sorry for me and from then on she would ask how i was doing, me being me i lied and hoped shed forget about it. Towards the end of that job there was days when i just could not get out of bed and was in so much pain most nights i would roll around my bed and cry into my pillow so no body would hear me. I also hid the fact that i was vomiting alot and some times could not hold down as much as a few mouth fulls of water. Around that time most of my family and friends were begining to ask alot of questions on why i was getting so thin and had i ate today and questions like that. Then one day a few months ago i got a phone call from my parents asking me to come home and bring my boyfriend along with me as they wanted to ask him something, so i got in my car with my boyfriend and came home. That was the day my life changed for ever.

Walking in my front door i went into the kitchen to see what was going on i could see my mother had been crying and my father looked very upset, to make a long story short they both went crazy and accused me of having an eating disorder. I couldnt belive my ears my own mother was saying all this stuff and of all the people she knew more than anyone because i would tell her things. I was so weak and frail i just sat there crying until i decided to try and walk out but little did i no they had phoned the doctor and he had advised my parents to call the Police an Ambulance and he would be on his way to sign me into an eating disorder clinic. That is the same doctor i had seen weeks before hand and who i told everything to, the same doctor who told me i had IBS and the same doctor who sent me for all my tests. So i begged them not to go ahead and i agreed to go back to the doctor with them so i could get some help. Of course i knew it wasnt an eating disorder and could under stand where they were comming from as within 7 wks i went from 9 stone to just under 7. But to be accused of that i taught why wont any body listen to me. With in that week i had gone over to the doctor and begged him to send me for the cameras that same week i was back in and this time things were not so good i had the cameras done. Then had found a lot of ulcers in my bowl and were sending me for more tests. I cant tell u the releaf that i felt as this time i was getting some where i new deep down that i didnt have IBS or an eating disorder but nobody would listen. I have had a few more tests done like the barrium meal, blood tests. Ive just been back to my local hospital for the results and was told i have crohns and all the tests ive had done i need to have them all done again, i was put on Pentasa 500mg x 8 a day and this week i am going for a CT scan. My doctor when doing the barrium thaught i had a blockage and i think thats why i have to have a CT scan to confirm. These last few weeks have been so hard and looking at this site i know now i am not the only person who has this. If any body would like to share some information with me that would be great as nobody i talk to has this and doesnt really understand. Im sorry this was so long but i just had to get it out.

Thank You xx
 
Hello Bloom, and welcome!
Wow. It sounds like you've come to the right place. I'm new here as well and though I don't have IBD myself (my husband...), I've read through many postings by others who have gone through similar harrowing ordeals before being properly diagnosed.
I hope now that your Docs/Care Team are getting on the same page as your body, that your improvement will progress quickly and smoothly.
Good luck!
Wifey
 
Hi Bloom, you've been through a lot in the past little while haven't you? I'm newly diagnosed as well, and have found this site to be a godsend! You can ask anyone you like - nothing is too much info!!!

I started on Pentasa as well, but when that wasn't doing anything I was also put on Prednisone and Azathioprine (Imuran). You might find the same thing happens to you if the Pentasa doesn't kick in quickly. There are a lot of scary side-effects for them, but they are rare so don't be too scared if this happens. I have put a little bit of weight on in my face, but that's it, and I've been feeling soooo much better.

Most importantly, you've been diagnosed. If you read others stories you'll find that a quick diagnosis is something to feel lucky for - many people have been waiting for years! And that must have been hard with your parents thinking you had an eating disorder...BUT as a result of this you now know what's wrong with you and can start the (hopefully short) road to figuring out how to make your life enjoyable again.

Best of luck, and keep us updated,
Georgie
 
Hi Bloom and :welcome:

I'm glad you found your way here. There's loads of info and support and you will find many kindred spirits hanging out around the forums. My daughter had a similar experience regarding the eating disorder, I never thought she was anorexic but her friends did and that was difficult for her. I can only imagine what it must have been like for you. :(

Do they suspect your Crohns is in the ileum? I hope all goes well with your tests and they can pinpoint exactly what is going on. Please keep us posted on how you go and good luck!

Looking forward to hearing from you again.

Take care, :)
Dusty
 
Thank you guys for your replies its good to no that there are real people going through what i am going through. I am currently on Pentasa so far i dont see any changes plus im finding them very hard to swollow im also on a liquid diet of ensure plus and am taking iron tablets and getting B12 inj 3 x week. Is there any other meds that i can take to help me?? Also is there any pain killers out there that really works? So far i have not had any other than normal pain killers. Im back this week for a CT scan and so far i havent really asked many questions as i dont know what to ask can any one help me with that please? Im trying to cope but dont really understand it. Thanks again for your quick responce x
 
Thank you Dusty i will have a look and take note. I see you have had an opperation what did they do for you? if you dont mind me asking x
 
Welcome Bloom!! I would imagine your GI will mention prednisone if the flare isn't brought under control with the Pentasa. I'm glad you have a name for your illness and can get the proper treatment now. Good luck!!
 
No not me, it is my daughter that had the operation. She had a Right Hemicolectomy 4 years ago. Her operation was an emergency as her bowel was perforated and infarcted but she has been fortunate as she has been in remission since then.

Dusty. :)
 
Oh sorry i didnt relize it was your daughter glad to hear shes in remission. I really think that they are going to opp on me ive just got this funny fealing ive had all the test done and now i have to have them all done again is that normal?
 
Hi, sorry to hear you've been through all that! Here's what I do with the Pentasa tablets- first I get a mouthful of cold water, pop a tablet in, wait 10 seconds or so for it to start dissolving, then it goes down much easier. For painkillers, do you have CoCodamol in Ireland? It's paracetamol and codeine and is the best you can get over the counter. If that's no good, you need to ask your doc for something. Stay away from ibuprofen and aspirin as they can irritate the bowel, specially if you've got ulcers! As for the tests, it does sound like you have a narrowing, maybe they want to double check, see if they can determine what sort it is and what the best treatment is. If it's inflammation, they will probably give you steroids. If it's scar tissue they can sometimes put a balloon in there and stretch it open again without having to cut it out. So even if you are blocked, you may not necessarily need surgery. Hope that helps!
 
Hi Bloom
and welcome

nothing more to add, just hope you get some relief and answers soon.
Pred isn't everybody's favourite med, but it healed me good and proper. Let us know how you're getting on, good luck!
lotsa luv
Joan xxx
 
Thanks rebecca and thanks joan will put my update on thursday hopefully its some good news x x
 

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