Joe-My story

[JoeUK]

Where do I begin. Looking back to my childhood I guess that I have been suffering from crohns for a long time. I remember spending a lot of time running to the loo. 11 years ago I thought that I was developing piles-how embarrassing (soon to be outdone by what followed). I tried different remedies but the swelling and pain increased so much that I ended up going to my GP who referred me to the local hospital. I saw a surgeon (beware of these - they like what they do and are always eager to offer a surgical solution) who told me I had a peri-anal absess that needed to be "dealt" with promptly. I grudgingly agreed, went through the surgery, took time off work (major issue) and got used to the daily routine of the district nurse coming round every day to stuff alginate dressing in the wound for weeks. Over the years I got used to dropping my trousers and letting go of any modesty and embarrassment I had left. After this episode a lovely specialist diagnosed my crohns and sent me home. I started on 3 grams of Pentasa a day. I went through the whole barium follow through x-ray that indicated terminal illeum crohns and the obligatory colonoscopy (had to do that twice the prep was the worst!). Over the next few years I had more time off work because I developed a peri-anal fistula and two more abcesses. I had to gonfor more operations and had two seasons that I found Very uncomfortable but better than having more ops. After that I move area and ended up seeing a new specialist. After a long and scary discussion he put me on Azathioprine. The initial 250mg made me so I'll that I could not cope. I complain bitterly and he agreed to let me lower the dosage slowly until I could cope. I've been on 100mg for years now. Azathioprine scares me a lot and I have been very worried about it for a long time. Over the years I have lived on fagyl and had some steroids on once. A couple of years ago I started getting the most horrible gout attacks. Aftr a bit of reading I discovered the I could be the pentasa and azathioprine causing it along with a high uric acid level. I'm still struggling with the gout big time and the attacks are debilitating Tongue degree where I'm insommuch pain that I cannot walk. Any ideas anyone? I also went through a patch of taking loads of antibiotics and ends up bleaching my intestines of all the natural flora and ended up getting a major yeast infection which meant months of anspecial no sugar diet. I'm also allergic to dairy which meant I could basically eat brown rice! Oh, just before I was diagnosed a friend at work disappeared for a week, eventually came back, and told everyone that he had this terrible disease called Crohns. He moped around, went for counselling and generally descended into despair. I remember supporting him at the time and feeling very sorry for him to have had such horrible news. A few months later I was diagnosed. It was anreally strange experience. I felt nothing, was completely calm and told noone. He thought that I was joking when I told him. Since then he has been okish and it has been nice to have a crohns buddy. In can't believe inha emjusf gone on like this telling my story but I guess you guys will understand.

 

[Crohn's 35]

HI Joe !! :welcome: yes if anyone understands you is us! We know the embarrassing parts too. Having child birth, kidney stones, Crohns, test... doctors have seen my butt and others more than I want!

I have only had on abcess, and it was in the intestine, and had my first resection. Having fistulas and periannal I have not but I wince when I see someone on here with that. I cant even fathom that pain. The meds are a different issue, we are all different and some feel like if it aint broke dont fix it. All meds have sides effects. Everyone's disease is different.

Glad you are here a great bunch here to help you and we can learn from you too! :hang:

 

[Dexky]

Hi Joe, welcome!! I can't offer any advice. You've got a lot more experience with this than we do. Good luck!! Look through the treatment thread. You'll find a lot of info in there about all the drugs.

 

[DustyKat]

Hi Joe and :welcome:

Well you found the right place for support and info. I hope you get some relief soon for your gout. The only thing I can suggest would be to see your doc and see if he can prescribe something for it. I think Colchicine is probably out of the question but what about something like Allopurinol? Perhaps make an appointment and discuss it with them. Most people also control it with diet but I don't imagine you would be indulging in the forbidden foods anyway. Sorry I can't be of more help but I do hope you stick around, this is a great place!

Welcome aboard!

Take care,
Dusty

 

[amirah]

Hi joe, welcome to this forum, its a great place and im soooo glad i found it.:ysmile:

 

[JoeUK]

Thank you all for the lovely welcome! I'm feeling beter already

 

[Brindle]

Hi Joe,

Welcome to the forum!!! Be well

 

[Astra]

Hi Joe
and welcome fellow Brit (where are you?)

sorry you're in so much pain from the gout, I would suggest allopurinol as well, but be aware, you'll have to come off the Aza, cos it interferes with allopurinol and the Aza will stop working!
hope you get some answers off the doc, let us know how you're getting on
lotsa luv
Joan xxx