New, Worried, Sad, everything.....

[Sega]

Hi, well as the title suggests I'm new to the forum, have been diagnosed with Crohns for the past 4 months. I'm lucky in that my Crohns doesn't seem too bad, it is the last part of the small intestine and from the MRI scan it hasn't strictured or fissured at all.

I have had problems with diarrhoea, stomach pains and lethargy for many years and recently it became the norm, I lost weight etc and generally felt unwell all the time. Especially after eating, not sure if that is normal?

I am about to start a decreasing course of budesonide over three months and azathioprine, which starts low and increased over the next 3 months so that I can then carry on with the azathioprine for 3 years. I'm told this is very effective and I'm hoping I will be able to eat more then just chicken and rice which is the only thing that seems to stay in.

Thanks for listening to my woes, it is nice to have somewhere to talk as I do seem to feel sad all the time also.

Finally I have a question, I was going to start my meds today but I have a stinking cold, should I wait for that to go? As I am aware that the tablets affect the immune system.

Looking forward to chatting on the Forum more....thanks.

Steve. Age 48

 

[Angrybird]

Hello Steve and welcome to the forum

With regards to the above mentoined symptoms these are definetly part and parcel of the disease, hopefully the meds will do the trick and you will be feeling much better soon. I think it should be ok to start the Budesonide but with regards to the Imuran it may be worth seeing if you can either get in contact with your GP or GI team tomorrow to see what they would advise. I know from when I have been on this med and now on it's 'sister' drug 6mp that have to let my doc know if I have a cold that seems nastier than normal or lasts more than the normal few days. What dose of the Imuran are you being started on? I take it you will be on regular bloods for this? With regards to the 3 years is it the doc that has said this is how long you will be on it? I have not heard before of a time limit on a med, especially if it is working and keeping the tum settled. Also have you had any of your vitamin levels checked as part of the bloods you have had so far?

There is a lot of helpful info and support here so do have a good look around.

AB
xx

 

[Pirate]

Welcome to the Forum Sega. I really can't add much to what Angrybird said. It does get a little boring trying to find differant ways to cook chicken and rice. My wife won't fry it and if she should, off comes the skins. Look around throughout the forum and you'll she that everyone reacts differant to all kinds of food plus you'll get some great ideas about differant things to try.

 

[SarahBear]

Welcome to the forum, Steve!

I think Angrybird has mostly covered your questions and concerns, so I just wanted to say hello.

As far as eating goes, you might be able to find some advice and suggestions on the Diet, Fitness, and Supplements section of the forum.

 

[Sega]

Hey thanks everyone for the replies.

I was thinking the same about starting the Budesonide and holding on the Azathioprine so thanks for the positive reinforcement. This cold has had be laid up in bed for two days so far so it does seem a nasty one.

The dose of Budesonide is 9mg for one month then 6mg for one month the 3mg for the final month.

The dose of Azathioprine is 50mg for the first week, then 100mg for the second and 150mg thereafter for the quoted 3 years, I think the time period was an approximation as to how long I might have to take it to see lasting benefit.

The bloods are weekly for 4 weeks then monthly for 2 and every 2 months after that. I guess they change that if there are any anomalies?

I've had really good success on the Budesonide before but the symptoms return as soon as I stop taking it, hence the plan to try the longer term Azathioprine. Interestingly the nurse has not prescribed calcium tablets that I had before so I will chase that up.

I also take a daily vitamin tablet and to date my levels are ok but the diet is very restrictive even when on the Budesonide so I am hoping with the new drug I can branch out a bit. With Christmas coming too

Hey Pirate and SarahBear thanks for the link to the Diet areas...I shall take a wander there next

Slightly more cheerful

 

[Angrybird]

I can only agree about chasing up that calcium supplement. With regards to the Aza that does sound like standard procedure with this med, we do have a sub forum for this med if you would like to have a chat with others who are on this as well: http://www.crohnsforum.com/forumdisplay.php?f=64.

 

[Sega]

HI, thought id give you an update.
Started the meds, two weeks in now and so far no side effects. Going to up the dose to 150mg aza today so fingers crossed. Have my second blood test today so hope that is good also.
I tried varying my diet but that wasn't such a good idea, I think a hot curry was the last thing I should have tried LOL.
Anyway, all good so far.

 

[Angrybird]

Ooops! Well at least you know now to avoid hot curry. Hope things are otherwise ok with the tum.

 

[Sega]

Thanks, yeh the tum seems ok as long as i stick to a low residue diet, but I have noticed that if I have a few drinks, maybe two glasses of wine I just feel horrid. Thought it might be the aza but I'll wait and see how it is over he coming weeks.

I didn't read anything about aza and alcohol anywhere, it might be the Budesonide perhaps?

 

[Angrybird]

It may be best to stay away from alcohol until you have stopped the Budesonide and then see what happens - some folks here find alcohol is just a no go with their crohn's.

 

[Sega]

Update: Feeling much better these days, the Aza seems to have finally settled now that I have moved it to the evening, the Budesonide is now all done and i'm feeling much better even when have one or to drinks. Also the tiredness is better now.
All I need to do now is feel better in the morning Currently have trouble getting up because my legs don't seem to want to wake up at the same time as me!
Still watching what I eat....but we all get used to that don't we.

Aza 150g for the past 4 months and I think they are starting to do something.

Best wishes to anyone reading this...things do get better.

 

[Angrybird]

Glad things are doing well How long have you had this issue with your legs?

 

[Sega]

It was for a few weeks following the Budesonide finishing. I was very fatigued and the doctor signed me off for two weeks to rest.
They seem much better now and I am back to work.

 

[Angrybird]

That's really good to hear, I hope things continue to improve for you.