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From there to here- it's only taken 10 years

Hi,

So here's my story- may be of some use to someone or might just get me used to using this forum... Here goes.

In 2002 I fell off a bicycle and hurt my back was given Difene for damage I had done. About two months later I started getting terrible stomach pain, constant stabbing and terrible Diarrhoea. I went to my college GP and discussed this with him. He asked about family history and when I told him of my mothers CD he felt I had same. He referred me to doctor through insurance so was seen within a few weeks (but still had to pay). Didn't mind once it got sorted.
Went to see first Doctor and he spoke to me for about 10 minutes and then said I had IBS. Sent me home with leaflet and told me to buy diet book. Wasn't really eating at the time so felt it wasn't diet related- (pain was too bad to eat). I spent the next year going in and out to the same doctor who eventually did a colonoscopy. Found nothing. Told me it was my own fault and in my head, I was 19 at the time, on my own, away at college just after my first scope and I was feeling pretty low anyway. This just made everything so much worse. I stopped "bothering" this doctor and tried to deal with this myself. Instead of having a normal college life I spent most of my time at home- nervous to leave the house in case I had an accident. This went on for a while until my parents pushed me to see a different doctor.

At my first appointment I presumed he would tell me the same as the last doctor and just reaffirm my mental instability. I was very low at this stage, I had lost too much weight, couldn't and wouldn't socialize I found college hard (as I hadn't made the toilet a couple of times in college and though always prepared with spare clothes extra I was still worried and mortified constantly). I remember to this day sitting down with this doctor and starting to tell him about what was happening and him looking so full of empathy. Eventually when telling him the really embarrassing I start to cry and felt even lower then before. Then he said one thing that I will be eternally grateful for "don't worry, I'll find it and I'll fix it".

He felt given family history and symptoms I had CD. He started me on Pentassa granual's and booked me in for bloods and a scope. A week or so later I woke up from my scope and he gave me the bad news "I didn't find it", I thought I was definitely losing my mind then he said "but I promised and I will". It three scopes- he was constantly finding evidence of scaring, ulcers, samples were coming back as crohns disease but he coluldn't find where it was. Eventually on my forth scope in a year he found it in my Illium and the end of my small bowel. I was put on steriods, pentasa and monitored.

It wasn't an easy ride, my crohns was progressive and some weeks I wouldn't leave the toilet never mind the house. I ballooned with the steriods - having to take up to 12 steriods a day and more some times. I was in and out to my IBD clinic and Professor O'Connor reassured me constantly that we would evntually get it under control. No medication seemed to work for long I was on imuran, Flagyl, Prednisone, 6MP all at varrious times and usually with little effect long term. I had good months and bad months and good years and very bad years.
Eventually in 2007 I was hospitalised for three weeks. I was in agony and was living on morphine. I was in a different hospital to my doctor as I had taken ill away from home. The pain was different this time and the doctors had a list of possibilities. I was supposed to be getting married in the June and this was March. Eventually I was realised when I lied for days on end and went straight to my IBD doctor who without even touching me told me I had Gallstones (apparently common with CD) and refered me to a specialist who had me on an opperating table within 2 weeks and getting ready for my wedding soon after that. It was great I felt super.
In the lead up to the wedding my CD reared it's ugly head and I ended up back on steriods on the day and with my best friend promising if she saw me runninng for the bathroom to follow so she could lift me dress. When I think back now it's quite a funny picture of a girl with a swollen moon face, sitting on a toilet (disable one Thank God so it was a bigger room) with my best friend and maid of honour holding my dress over my head while trying to fix my make-up from the sweats and worry. But only when I think back.
Before the wedding I spoke to my IBD doc about pregnancy and he said should I come off my meds it would take 12 months minimum to get pregnant as I had been so heavily medicated for years. I was pregnant on our honeymoon.
My pregnancy was hell and I ended up back on high doses of Prednisone. Eventually my daughter was born healthy and happy but her mum wasn't in great shape. I returned to my IBD clinic 2 weeks later and was scheduled to start Humira 4 wks after that. I started Humira- 1 injection bi-weekly. It helped greatly for the first 6 months when eventually I was back in a bad way. I used to have a play ring, toys and bouncer in the toilet for my daughter constantly- because we used to have our fun days in the bathroom. I ignored it not wanting to believe it was back already. It got very bad when I stopped eating for a couple of weeks in the hope that it would help. I eventually ended up passing out one day and we spent her 1st birthday in hospital. I still have the pictures of me, her, my friend and all the nurses blowing out the candle on her bun- I was there for 2 wks. Eventually was put on Humira weekly (aswell as a small concoction of drugs for a short time to get it back under control) and since then I have done extremely well.

I even had another daughter while using Humira throughout my pregnancy. I can still live my life with CD.

I still get occasional flare ups but I can live with them and have learned to control a flare up in part with diet. When I feel one starting I cut out any 'good food' and eat rubbish food for a few days (no vegetables, processed food before fresh, definitely no salads, potato skins etc). I still pray that some day I'll have no Crohns but mine has never been dorement for longer than 6 months in the 10 years I've been diagnosed but hope is a great thing.

So I think that 's me.. Warts and Ulcers and all!
Wow that was long... Sorry if I bored anyone but that was quite therapeutic.

Thanks
Rugbymom:smile::smile:
 
Welcome to the forum! :hug:

Your story wasn't boring! I'm glad you are on the forum & am even happier you are success with your treatment! :dance: I really do like reading positive stories! Feel free to ask questions & share your 2 cents!

I can empathise about the 'all in your head' deal. When I was 13, my GP made me see a psychologist before being referred to a gastroenterologist. Fortunately, my father went with me & we just made a joke about the whole thing. I'm adopted & look very exotic, both my parents are white. My dad told the therapist I was indeed not adopted. Just tan. :lol:
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welome to the forum, am glad you have decided to join and share your story. Unfortunately it does seem to be the case for many here that the docs do not take you seriously and either pass it off as IBS or even an eating disorder, this then of course means that the disease is left untreated and gets worse :( You have come to the right though for lots of helpful info and support. It's great that the Humira seems to be helping, how long have you been on this? Do the flares that you occasionaly get get sorted by changing your diet or do you have to see you GI for additional support there? How long do they tend to last?

AB
xx
 
It's great that the Humira seems to be helping, how long have you been on this? Do the flares that you occasionaly get get sorted by changing your diet or do you have to see you GI for additional support there? How long do they tend to last?
Thanks guys, nice to feel welcome. It's good to feel that I'm with people who know what I'm going through and feeling.

I started taking the Humira in May 2008, 1 injection bi-weekly initially and this worked well for a few months. But then in March/April 2009 I flared badly and ignored it and ended up hospitalised for two weeks. It was changed then to a weekly injection.
In regard to my flare up's it depends on how quickly they come on and how bad they are. If it's just a small flare I can help myself by not eating any raw foods, eating more processed foods and staying away from fiberous foods. At the moment I am having a flare (that I was ignoring) and ate a big salad for my lunch yesterday- I'm suffering for it today. So I'm trying to eat more rubbish food. But I know myself I will have to go to my GP (he's excellent and will contact my GI if he is unsure of what I need) during the week and if a course of the dreaded steriods don't work then it would usually be 6MP or imuran for a short period. The flares vary from a few days to a few months.

When you've had a few months off, you really notice when it comes back. Feel totally wiped today! :yfrown::yfrown::poo:
 

David

Co-Founder
Location
Naples, Florida
Hi Rugbymom!

Wow, thank you for sharing your amazing story. :) It's terrible what you had to go through before finding your good doctor though. Goodness :(

I am SO GLAD that Humira is working for you.

We're here for you and I hope to see you around regularly.

*hugs*
 
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