• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Just saying Hi!

Hi everyone,

I'm new to the site, only joined yesterday but stumbled across it when I was googling some questions.

I have recently been diagnosed with crohn's :( (August 12) and still trying to get to grips with everything - it's so daunting!

I had been suffering with on and off diarrhea since May 11 upon coming back from a holiday to Ibiza (not your usual boozie one either) I put off going to the doctors for ages because it was barable, but it got towards the end of the year and I started to be in a considerable amount of pain.

I had several blood tests done, but due to having an IgA blood deficiency they could not tell from blood tests and referred me for a flexible sigmoidoscopy which the biopsys came back fine. However I obviously wasn't fine and I had lost 6stone in a matter of a few months, I was pale and exhausted!

Everything was then done as a matter of urgency, I had a CT scan, MRI scan and from the results of these was then sent for a colonoscopy. The doctor doing the colonoscopy could see and was 99% sure I had crohn's however had to wait for the biopsy results to confirm.

This was then all confirmed, however during my first procedure (flexible sigmoidoscopy) there was some concern as I had a small hole at my tail end that was weeping and my GOD it was painful.

After my colonoscopy the doctor referred me to a surgeon urgently because he was sure I had a fistula.

So just when I thought my ordeal was over; I'd finally been diagnosed and was trying to get my head around the mass of information, I was then told I needed to have an operation to remove the fistula. I was petrified!

The op went fine, and was completed in Dec 12 so I am still in the healing process at the moment but I am so much more comfortable.

I'm still trying to get my head around everything and try and find ways to manage the pain because it comes and goes in waves.

I am only on Budesonide and have just been taken off Adcal 3 tablets. However the pain and diarrhea is still pretty constant, every few days I'll get a spell and I am so pale and have no energy.

My Gastro Dr seems to think I'm doing well, I saw him yesterday but will I always have the pain and diarrhea or should the meds be stopping this?




So that's a little intro to me :) I'm so glad I've found this site, there are so many unanswered questions I've had that this can help with :heart:


Sam xx
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

To confirm is your doc aware of the continued pain and diarrhoea? What dosage of the Budesonide are you on and how long have you been on this? If it has been since your diagnosis then I would say this is clearly not doing the trick and an alternative needs to be looked at, also this is a steroid which should only be used short term to sort out inflammation so I would have expected by now for a long term maintainalence med to be looked into for you - have any other meds been discussed with you at all? You certainly should not be having to put up with continued symptoms with the tum and this indicates to me that things are not settled inside. Also do you notice whether certain foods aggrivate the tum?

I am glad you have decided to join, there is a lot of helpful info and support here for you.

AB
xx
 
Hi there and welcome. If you have a fistula, I'm pretty sure Budesonide isn't going to be enough but others here know better than me.

I just wanted to welcome you and let you know you're in the right place. This is a great community of people.
 
To confirm is your doc aware of the continued pain and diarrhoea? What dosage of the Budesonide are you on and how long have you been on this? If it has been since your diagnosis then I would say this is clearly not doing the trick and an alternative needs to be looked at, also this is a steroid which should only be used short term to sort out inflammation so I would have expected by now for a long term maintainalence med to be looked into for you - have any other meds been discussed with you at all? You certainly should not be having to put up with continued symptoms with the tum and this indicates to me that things are not settled inside. Also do you notice whether certain foods aggrivate the tum?

AB
xx

Hi :)

Yeah he is, everytime I've been to speak to him I tell him I still suffer from pain and diarrhoea but it's like he ignores it? He's a brilliant Gastro doctor so I don't know why. Should I try speaking to my GP or will they just tell me to go back to my Gastro specialist?

At the moment I'm on 1x 3mg tablet but I started on 3, moved down to 2, down to 1, back up to 3, down to 2, now back to 1 and have been on 1 since December.

No other meds have been mentioned but when I was talking to the surgeon after my op for a check up he asked if the injection treatment had been mentioned to me but nothing like this has been mentioned? Ideally I don't want that either, a tablet will be fine! Ha

At the moment all I have been able to work out is mainly dairy e.g. ice cream and milk really irritate me, I've started a food diary but I can't relate anything to when I get pain it just seems to be random, however I don't eat a lot or very healthily!

I used to weigh 16 1/2st and I'm now down to 10st, which I lost within about 4months. Since being on the meds I am not losing weight as fast but I am still losing it :( xx
 

Angrybird

Moderator
Location
Hertfordshire
You definetly need to be getting back to your doc, pain and diarrhoea is not doing well in my opinion and it doesn't seem to me that the the Budesonide is doing the trick. You may need a stronger steroid such as Prednisone to get the tum settled and then you need to be put on a maintainence med to keep it that way. When you had the procedure for the fistula were the docs able to check on disease activity inflammation wise?
 
Not that I'm aware of, no one mentioned anything to me about that, tbh no one really spoke to me much at all - I was left a bit in the dark with it all.

My gastro dr just seems to ignore what I say and says that I'm doing well when obviously I'm not so I'm not sure what I can do, is it worth speaking to his receptionist and seeing if she can advise anything?

As I say the pain comes and goes in waves, from day to day but the diarrhoea is pretty much every day but not in the sense that I have rush to the toilet, just when I need to go it's diarrhoea rather than formed and it's sooooo draining! :( xx
 

Angrybird

Moderator
Location
Hertfordshire
I think it is worth speaking to his secretary to see if you can have another appt sorted or so he can be made aware that you are having symptoms and they need to be looking properly into disease activity and getting you on a working treatment plan.
 
Top