So Fed up....

[Tina_M]

Hi there

Had blood tests done last week and ESR marker is up at 74.... is this really high for a crohns sufferer? When I was really ill and in hospital my marker ranged anywhere between 30-50.

The past few weeks have not been great and energy levels are at an all time low!!

I am not currently on any medication for Crohns, my consultant wanted me on Immuran last April but due to the side affects / risks it was not the right time for me to start this medication and if I am honest now prob isn't a good time for me either and I am petrified of the side effects. I was on mezevant but felt these made me worse so consultant advised me to come off this.

Dietican wants me to take Modulen drink once a day whilst still eating my normal amounts of food.... I was always in around 10 stone but for about last 6 months I have dropped to 9 stone and can't put any weight on. I am 5ft 6!

I get B12 injections every 3 months

Any advice what be greatly appreciated, I am due to see my GP on Friday but not sure what other options are available to me? Just getting so fed up of constantly feeling unwell!!

Thanks & Regards
Tina

 

[polar1920]

Hi,
You get so fed up of feeling crap dont you?
I think you will feel better when the doctors decide which treatment they are putting you on. Sometimes you have to try a couple to get the right combination for you. I think you will feel better once the Crohns is under control.
I take Imuran, 200mg a day, as well as budesonide which is a steroid that just acts in the gut. I take other tablets for my arthritis too.
I am also 5 foot 6 but I weigh 7 stone 5 at the moment and size 6 clothes are getting a bit loose. I eat, but my weight never goes up. I also see the dietician she gives me advice on high calorie things to eat.
Keep fighting, let us know how you get on at the doctors :hug:

 

[littlemissh]

Hello and welcome,
I too was wary of taking stronger medication.

However after much thought I felt that the damage crohn's was doing to my insides and the risks of complications from Crohn's (which are many if left untreated) outweighed the risks of the medication. When on imuran the risks are reduced by having blood tests which detect them early and many have had a really good response from imuran/azathioprine..
As long as you are sensible and aware of your body you will be ok. If you do not take medication then you risk permanent damage / stoma etc. There are many whose disease can be controlled without medication but from the sound of it you have fairly active inflammation and your symptoms suggest quite active crohn's.
Modulen is worth giving a go. Will help with your weight and it also has anti-inflammatory proprties.

One thing to be aware of, it is human nature to post when things haven't gone well so there will be threads about drugs which can be off putting. Look also for those threads which are positive.
Best of luck.