My Story so far!

[LoobyLoo]

Hi,
I'm 37 and was diagnosed with crohns 11 years ago, ( 2 weeks after I got married...they say there's no connection!!). Things have been ok for most of the time, well, I use the term 'ok' loosely, I guess you just get used to what is normal for you. Anyway I had an MRI scan last December and they found a 10cm stricture in the colon. As I wasn't then experiencing major pain it was decided to leave it and 'see how you go'.

I have been having pain every day since August and the consultant put me on a six week steroid course to see if it helped...it didn't, I was supposed to see him in October to discuss how things were but my appointment got cancelled...again..I am now going to see him again on 3rd Dec. He wants to put me on Azathioprine and do a right hemicolectomy. I have read up on both but would welcome comments from people who have actually been through anything like this. I work in a school and am worried that if i take the azathioprine i will catch every bug going, not to mention swine flu.

I know that this is the next step the consultant will take and I do trust him, i just worry that the cause of the pain is something different as the stricture is on the right and most of the pain is on the left. He's going to love me when I go and see him as I already have a huge list of questions!!!!

I look forward to reading anything that anyone writes, it's nice actually to get it off my chest, my husband is very supportive but doesn't always understand the need to stay close to a toilet some days!!!!!

 

[Pirate]

Welcome LoobyLoo, You will get great support from this forum, I have. I cannot help you about the treatments you mentioned but I can say you can never ask enough questions. The only way you will learn is ask.

Love the marraige connection statement.
Good luck with your Dr appointment.

 

[Jer's Girl]

Sorry I don't have any advice for you. Just wanted to welcome you to the forum. You came to the right place for advice and support.

 

[LoobyLoo]

Wow, what quick responses...kinda like the 5th emergency service!! Anyway nice to hear from you. I'm looking forward to chatting with people. I've never done any forums before. I think sometimes it's nice just to share stories. Thanks again for 'welcome'

 

[Claire617]

Heya, not too sure how it's working up and down the country but my gp's have already had their swine flu jab clinic, it was obviously offered to people with immune system problems and those that live with you. Anyway I've had one jab and they're offering me another in a few weeks time incase my immune system hasn't absorbed it, you'd definitely be eligible to have it. Hopefully this helps with the swine flu question

 

[shazamataz]

Hi and welcome Loobyloo,

This is a great place for support, advice and fun. Everyone here 'get's what you are experiencing so it is very therapeutic.
Sorry to hear you are having ssome problems. Though sounds like you've been relatively well for quite a long time? Is this the first time you have been suggested medications? I ask because it is unusual for a person to go 10 years without - but also inspiring for those of us who are new to this!

Shaz

 

[LoobyLoo]

Thanks Claire617, i'll check out local gp and see what they say.

Hi Shaz,
When I was first diagnosed I was on a concoction of pills but didn't really pay attention to what they were (denial!!), at one point I was on 15 tablets a day, the main one I remember was prednisone (3 tablets to make up dose). Prior to that budesonide -didn't work. Have been mainly on Asacol, then Pentasa, then Mezavant XL. With the stricture he has now put me on Salofalk granules but wants to add Azathioprine and because of the cramping and sharp pains he thinks it is now time to remove the stricture. Had a course of Omeprazole recently for heartburn too, that seemed to get rid of a lot of what I thought was crohns pain so now not sure what's going on!! Have previously had stomach ulcers so never really know whether it's just heartburn or another ulcer.! Oh the joys us Crohnies face!!

 

[My Butt Hurts]

Hi Looby,
Everyone reacts differently to different meds, so it's hard to say how you will react. I haven't noticed any lack of immunity though I was on prednisone Imuran and Remicade all at the same time. I think the chance that I might feel better on them outweighed the chance that I might pick up a few extra illnesses (which I haven't).
Like said above, you should be eligible for the H1N1 shot just because of your diagnosis.
Hmmm... I was diagnosed after getting married too. I think it's a connection, definitely
Welcome to the forum!
MBH

 

[farm]

:welcome:

 

[Jennjenn]

Welcome!

 

[Tan]

OMG I was diagnosed about 3 months after my wedding too! I was actually really sick on the day of my wedding. We had it away at a resort and went out to dinner the night before with everyone and I had the runs all night then woke up the next morning with vomiting and the runs again. Cont all day and into the night had to end up taking my wedding dress off during the reception as I was so bloated and it was cutting into my stomach and making me sick. A few days after the wedding of being careful what I ate and just resting I was better again.

We now wonder if I was having a stress induced attack back then and then in august it just got heaps worse and hasn't yet gone away. It just make you think bout stress being a link cause I know anytime in my life when I have gone thru something stressful I was always at the doctors with a supposed bowel infection or stomach bug! Ha..ha..

Good luck Looby with the drugs... I was taken off aza after 5 weeks as I had a reaction to it but hopefully it works out better for you. Im now waiting to find out the next step for me to take.

 

[LoobyLoo]

Starting AZA in Jan supposedly, will have to see how I go.

My wedding day wasn't too bad it was the Honeymoon. Spent all of second week in my room, mostly sat on loo and chucking in bidet!!!(which was conveniently placed next to loo!)

I agree with the stress comments totally.

 

[Nancy Lee]

Hello ...

Just popping in for a belated welcome to the forum!!

Hope the meds kick in and you get to feeling better real soon.

Welcoming Hugs~Nancy

 

[imisspopcorn]

Welcome LoobyLoo...Good luck with the Aza...I have been on a number of immune lowering meds and have never noticed a increase in illnesses. I have three kids who are always catching stuff, and rarely do I get it. I also worked on a pediatric floor prior to getting Crohn's, I caught everything back then. I was in my early 20's. I think maybe I built up my immune system from all that exposure. Do you normally catch every bug that is going through the school?

 

[Peaches]

Welcome to the forum Loobyloo!! Hoping the AZA does the trick for you!

 

[LoobyLoo]

I do catch most things quite easily, but now I come to think of it I always shake them off quickly too.

Have seen doc today and started AZA. She said I had a low score on the TPMT blood test (or whatever it was!) so having blood test every week for 6 weeks. I know loads of you all are on Aza but it seems a bit scary to me reading all the side effects. If I get a sore throat i've got to ring her and various other things....i'm going to become a hypochondriac (sorry ,. no spell check!). Anyway 50mg a day starting today..see how we go!!

Happy New Year to everyone!!
Louise x

 

[shazamataz]

Good luck Looby - keep us posted. I am interested as likely to be having to go the aza route myself soonish

 

[pain in the butt]

Wecome ! Met my husband right after my remission from cancer and now he deals with my bm issues for the past year and a half . not to mention my ustomybag . i feel like such a burden mentally and physically and financally. Yet he tells me he doesn,t care! what a bless huh ! thought the guy was crazy it take me on maybe after my life ins. lost it and the nuts still here he is happy for me that i found this site . need to give the poor guy a break ..................! good luck keep us posted.

 

[LoobyLoo]

Well, 1 week in on the AZA, 4 days back at school and I have a stinking cold!!! Typical. Felt a bit sick a couple of times over the first couple of days but nothing too bad since. Just feel lousy now with this cold!

Will keep ya posted

Looby!