My story

[Tamara]

Hi Everybody,

I've been having a poke around this forum for a couple of weeks now but after a frustrating visit to my GI today I decided to join. There is an amazing amount of information and it will be great to have people that understand what I am going through.

I'm 25 and was diagnosed when I was 20 after being rushed for emergency surgery as they thought my appendix had/was about to burst. After they had a poke around and realised it wasn't appendicitis but crohn's they put me on mesal and imuran and that was it for a couple of years, still symptomatic but not too bad. They think I'd been active since I was about 15.

A couple of years later though things got pretty bad and eventually it came to light that I had perforated bowel, a nice big ulcer and I was septic. Luckily I didn't have to have surgery that time just 3 weeks in hospital, antibiotics, steroids and TPN.

I had a few more doses of steroids and a couple of med changes (varying my mesal doses and then moved over to pentasa at varying doses) but thankfully nothing requiring hospitalisation until just over a year ago I had about 25cm of my terminal illeum and colon removed. Surgery went well, I came off the imuran and I had about 9 good months with very few intestinal symptoms, some mouth ulcers and psoriasis so was pretty excited. However, a couple of weeks ago I had a colonoscopy and now have severe inflamation and ulceration at the anastomosis site. So it's back to imuran for me. I'm pretty frustrated and upset by it all, I knew it was likely to come back but I thought I might get a little more of a respite and maybe it would come back in a mild version first and also wondering if it failed so badly before whether the imuran is even worth trying again.

My family hasn't done well in the gastro department with my dad being diagnosed with a mild case of crohn's at the beginning of the year and my sister has coeliac disease.

Things about me other than crohn's; I live in Sydney, Australia and work as a food technologist creating new products which is a lot of fun and certainly keeps my friends happy with all the samples I provide them. Looking forward to summer so I can get back to the beach!

Looking forward to meeting you all

 

[Angrybird]

Hello Tamara and welcome to the forum

I am sorry to hear that the tum is still acting up, I had the same issue last year after my op - within 3 months I was flaring up again and back on the meds. I can understand your reservation about going on a med that did not keep things settled before - have you spoken to your GI about this and if so what did they say? We do have a treatment section that is worth checking if you wanted to look at the alternatives out there: http://www.crohnsforum.com/forumdisplay.php?f=16.

Also have you ever had any of your vitamin levels checked? If not I would ask you GP or GI to get these done, it is common for people with crohns to suffer from malabsorbtion especially after having part of the bowel removed.

AB
xx

 

[Raine]

Hi Tamara
I'm a neighbour to you in NZ.I have only recently joined too. There is a large amount of info here and support.
Sounds like you have been through the mill alot and hope you start feeling better soon.
I am in limbo at mo as in the undiagnosed club.
What the care over there in OZ? Am having to wait for capsule endo on public as can't afford to fund it now. Already spent out on gastroscopy & colonoscopy. Got ulcers in my terminal ileum.
Yes roll on summer.....its been a hard winter here!

 

[David]

Hi Tamara,

Welcome to the community! I'm really glad you joined I don't know, it seems to me that something other than Imuran might be called for at this point. Maybe a biologic or even Low Dose Naltrexone if you're open to that.

I'd also strongly suggest that you try a gluten free diet to see if that improves your symptoms. With your sister being diagnosed Celiac, the chances that you are at least sensitive to gluten are increased. Two diets that seem to help many with Crohn's are the paleo diet and Specific Carbohydrate Diet, both of which are gluten free.

 

[Tamara]

Thanks everybody! It's so lovely to have a place where people are so welcoming and there is so much information!!

@Angrybird- Sorry to hear that you had issues after surgery also.
I didn't get a chance to really talk to my GI about my reservations, mostly cause I didn't really have them till after I left. I'm not so good at thinking on the spot and I was still in a bit of shock from the results of the scope I guess. I will definitely mention it next time I see him.
I have my iron levels monitored monthly and have my B12 checked every 6 months or so. Is there anything else I should be looking at checking?
I'll definitely check out the treatment section as well.

@Raine - Hello neighbour
It must be so hard to be undiagnosed!! Has it been for a long time? I really hope they find some answers for you soon.
I've been lucky, I live near some great hospitals and doctors so have had really good care overall. Very grateful for our healthcare system and how cheap they have made everything.

@David - I agree I'd like to look at some alternatives. I need to look into the details but my GP mentioned I couldn't go onto biologic meds until I had failed the imuran (I'm not sure if that's just so I can get it under the government scheme that makes it affordable or not at all). I know we looked into it before I had surgery but given the build up of scar tissue I went down the surgery route. So I'm not 100% sure, definitely worth talking more to my GP/GI about. I haven't heard much about low dose naltrexone so I will definitely do some more research into that.
I have been well tested for coeliac and have no gluten sensitivity atm. I don't eat a lot of it anyway since my housemate is coeliac so we don't keep a lot of it in the house. I'll do some more reading on the diets you mentioned though if it will help I'm definitely up for it. I did try the FODMAP diet last year but it made me really ill so went back to my regular diet.

So much information - it's fantastic!!

 

[Angrybird]

Others to have checked could be D and Folate. Also do you know the specific levels of your B12? Some docs will say you are in the normal range but the problem is the range is huge for this and being right at the lower end of normal could still mean that you encounter problems.

In the treatment section with the Imuran you will see something called 6-mp, some who have have had issues with the Imuran (like me) find that this will be ok instead.

AB
xx

 

[Tamara]

Thanks Angrybird!
I'll definitely ask about getting my vitamin D and folate levels checked and pull out the B12 levels (I haven't had them done for a few months now).
Thanks for the pointer on 6-mp I'll check it out