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Saying Hello

Hi Everyone,
I found this forum when my lastest flare up started and have been reading posts for a while so thought it was time to introduce myself.
I was 18 (1994) and just about to start A levels when my crohns started. Lots of dashing to the loo so I avoided eating to get through the exams! Blood tests showed I was very anaemic so they took things further and I was diagnosed with crohns a week before starting uni. Needless to say I only stayed for the fist term and was hospitalised for high dose steroids quite a few times during that time.
Things bumped along for years and I was never really well just put up with it. I also hated my Consultant so avoided him.

Fast forward to 2001 and we moved to Yorkshire and I have the most fantastic consultant who put me on an elemental diet and let me work out what I reacted to food wise - cadburys chocolate, pringles, margarine to name a few. I would never have found this out left to my own devices. Anyway I was well enough in 2002 that he said I could get pregnant. Unfortunately pregnancies, crohns and I do not get on. I immediately went into a flare as soon as I was pregnant and was on elemental liquid food at 8 weeks. At 12 weeks the docs said I was to try food which was when it was discovered I had a stricure at the terminal illeum and it was completely blocked. So 13 weeks pregnant I had a resection. The hospital were great and I didn't have a bag just a large scar quite high up as they had to avoid the baby. Grace is great by the way and arrived a very healthy 6lbs 2oz.

I was fine then until a year later I was pregnant on docs advise with the second one (Adam) and again immediately flared. They put me on steroids this time round from 8 weeks.
Things grumbled on until 2009 when I was put on Humira and I was fab. Could actually eat something in town and not panic about the nearest loo. Since December things haven't gone so well - we think it has relocated to the descending colon and the consultant is talking surgery as an option. I am not convinced. I have a colonoscopy next week and had an MRI last week to work out whats going on.

By the way did anybody else find the MRI horrendous? I felt so sick and the nurse said I was being silly and it was relief the test was over but I honestly didn't feel I could get off the scanner bed. All the way home I thought I was going to have to stop the car and throw up in a hedge. Luckily when I got home my guts didn't fail me and the contrast stuff all exited pretty fast if you get my drift. Must be one of the worst tests I have had. Yuk

Anway that's me and where I am at. Its nice to meet you all.
 

xJillx

Your Story Forum Monitor
Hi Rachiep! I am so sorry you are not feeling good lately. It is a shame the good times on Humira had to come to an end! You'll have to let us know of your results.

Also, I am floored you had a resection while pregnant. You are a trooper! But it is wonderful news Grace is very healthy! I hope & assume Adam was a healthy little guy, too? Pregnancy with Crohn's is something I am struggling with right now. It seems like many don't do well (though babies seem healthy, thank goodness), so I am debating when I will be mentally and physically ready for the challenge. Life isn't easy as a Crohnie is it? At least we have each other! I look forward to seeing you around!
 
Hi welcome :)

I hope that there is another option for you instead of another surgery. I am happy that you had a healthy baby girl when you had the resection!! And that you were able to have your little boy also during a flare. Good luck with everything and I hope you feel well soon!
 

ameslouise

Moderator
Hi Rachie and welcome! Wow, surgery while pregnant! You must have been really sick, and really relieved when everything was over and came out fine!

Sorry the meds aren't working for you now. I hope you can find something to make you feel better. In the meantime, lots of good advice and information here for you!

- Amy
 
Hi,
Thanks for all your messages.
Apart from the resection my pregnancy was actually fine. I was blooming - I had no normal pregnancy things going on ie no morning sickness, heartburn or any of that so once they chopped the dodgy bit out I blossomed.

It took some convinving to let them operate though. I had my consultant, the senior obstritician (sp!) and the senior surgeon all round my bed telling me I had to do it. In the end I am glad I did as Grace is fine and a very healthy, bright little girl. She is 7 and a half now. Adam was a healthy 6lb 7oz and has just had his 6th birthday and is also doing well. I didn't have any pregnancy problems with him either just the crohns bubbling away.

They are going to start me on Methotrexate next week as we tried 6mp and I reacted badly to it. I had to stop azathioprine as it gave me migraines. I am hoping the methotrexate kicks this latest flare into touch as I am not sure the consultant will let me stay on the steroids and he does keep muttering about surgery.
 

Crohn's 35

Inactive Account
Hi there, welcome to the forum :bigwave: wow surgery whilst pregnant,, that is a first! Congrats on your baby, glad he is healthy.

I was on methotrexate, just make sure you take folic acid before you start, and ginger to help with the nausea. Good luck.
 
:welcome:

Hey Rach

OMG surgery when pregnant. I started feeling anxious when I read that! You are brave!!!! I called my little girl Grace too! :)

Welcome to the forum, it's great here, loads of info and support for you :)

I've got an MRI scheduled within the next two weeks, eek! Currently flaring I think although the GI thinks I may have a stricture.

I hope the docs get your meds sorted soon and you're feeling well again. Good luck and take care.

Paula
x
 

ameslouise

Moderator
Hi Rachie -

Just a head's up about the metho. For me, and some others on here as well, there are many side effects. The worst for me was "fuzzy head" and fatigue. I also had some gyno side effects (tender breast and vaginal discharge, sorry TMI I know). But I will say that the fuzzy head and fatigue did go away after a few months, so hang in there if you get it!

Also make sure they monitor your iron levels in addition to the liver functions that they usually monitor while taking metho.

Not meaning to scare you, just wanted to give you a head's up from my experience.

Good luck!! - Amy
 
Hi Thanks for the replies - especially for the metho. The only info I have had on it it a small leaflet the consultant gave me when I saw him which doesn't give much away and what I found on wikipedia. I hope I don't get a funny head as the azathioprine gave me migraines which would wipe me out for a day. As I said to the consultant having dodgy guts at work is not so bad as you can keep typing in between visits to the loo and you can always not eat until you get home but having a migraine means bed and a day off so I put up with the risk of flares by not taking the aza as it was easier than taking two days off a week with my head.
I'll see what the specialist nurse says on Friday when I see her for the first injection. I will have had the colonoscopy by then as well.
 
Hi Paula,
Just wanted to say I hope your MRI goes okay. I think I felt ill because of the amount they make you drink but once it was all out I was fine.
 
Aww thanks Rach, got my MRI appt today, it's on 12th April. I'll be pleased to get it over with and find out what's going on with my crohns.

Take care huni.

Paula
x
 
Hey Rach

You were so right about the MRI. It was a struggle drinking the contrast stuff (about 3 pints I recon) and I was fine on the scanner bed but when I got up and walked around I started feeling dreadful, so so sick! I don't know how I managed a 45 minute journey home without throwing up in the car!!! (luckily I wasn't driving). I had to lie down when I got home and felt ill for the rest of the day. I'm still not good today (the day after) and I've had to run to the loo constantly with the runs!!! I've also had a really bad head since having the scan and have been popping paracetamol since yesterday. I think it's prob my body's reaction to getting rid of the chemicals that were put into me yesterday.

So Rach, I'm with you when you say it was a horrible experience!!! :(

Paula
x
 
Hi Rachie,

welcome welcome and welcome again.

Bit of a legend already, with having had surgery during pregnancy !!

Well done and i am glad it all worked out for you all.

Bruscar
 
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