does anyone suffer from inflammatory bowel disease cos of BD?

[lyddy]

[Hidden]

Hi,

There are quite a few threads on this subject, if you type bowels, stomach, tummy and that sort of thing into the top right search box you will find lots of info.

The Society have a factsheet about this: behcets.org.uk/Documents/we...

I'm sure you will get some more replies - but the above advice should get you started in your quest for information.

[lyddy]

Thank you

[Steamboat]

Hi Liddy,

I have had a ruptured bowel as a result of bd. it was managed with a colostomy that will remain until my pred can be reduced to 10mg per day, currently on 50mg with 3 does of IV methyl pred every three weeks. I also need to be free of bd symptoms for 2 yrs.

I also have had many endoscopes due to bleeding when I vomit. Signs of inflammation have been seen as well as candidia. This has been managed by somac 40mg twice a day and fluconazole 200mg in the morning.

Hope this helps,

Felicity

[lyddy]

Hi felicity,

Thankyou for your response, sorry to hear this, I have an ileostomy due to having my colon/rectum remove, this ileo is my 2nd one for me not sure if I'll be able to get it reserved this time it depends if I have active inflammation in my small bowel or above, I thought for last 12 years I had Crohns/colitis it only became apparent in last few Years that something else was causing these problems I was diagnosed with bechets 2 weeks ago, after reading the above link I see it's rare to have severe bowel problems with BD, if you don't mind me asking how are you coping with the colostomy?

[Steamboat]

Hi Liddy,

Please excuse me if I have replied to this before but we have returned to Australia following a vacation in the us and have had some computer issues.

I would say most of the time I manage ok but at present things are not going so well. I am finding that things just pour through and I am having lots of leaks such that I sleep on two towels. I also had my bag blow off taking a layer of skin with it when I had a high fever the other night. At the same time I seemed to have lost complete control of me bladder and we in the bath trying to bring my fever down - very messy.

I know ileos are a lot more work with all the above happening more often. How are you coping especially when you are very tired?

Best wishes,

Felicity

[lyddy]

Hi felicity.

Thanks for the reply I'm finding the ileo difficult this time really dehydrated most of the time as the output is so watery and whatever I eat it passes through within minutes, that's why I think it's inflamed higher up,sorry to hear you have so many leaks I used to have this problem with my 1st ileo, but luckily it's much better behaved this time but the skin underneath is very sore and red sometimes it clears but always comes back, I have a lot of skin rashes so don't no if this is connected,

In regards to night time I get little sleep as I'm up 4/5 Times emptying bag, I don't go to bed until around midnight as its crazy output in the evening. You mentioned you lost control of your bladder, is this a BD thing? I ask because I have been having issues I constantly feel like I can't empty my bladder completely but I don't have an infection

Thanks again

Lydia x