Hello, perianal disease

[arctic_alpine]

hello, perianal disease

Hi,
I was diagnosed with Crohn's in November 2010, but probably started having issues (perianal fissure that wouldn't heal, etc) back in 2007. I was diagnosed after a perianal abscess was surgically drained and turned into a fistula rather than healing. I think between 2007-2010 I saw 6 doctors before one sent me for a colonoscopy to check for crohn's.
my GI put me on 1.5 g pentasa (I'm pretty skeptical that pentasa helps at all, and certainly not at this low dose) and 9 mg budesonide (and has been keeping me on it as a maintenance med, even though I'm not sure its good for that). As an american student living in Israel, my options for english speaking GI's are a bit limited.
So I'm skeptical about those med choices, but scared of the side effects of stronger meds like remicade and azathiprine.
I got my second perianal abscess in april 2011, and this one seemed to have healed a few days ago, but now feels like its coming back. I have an appointment with my GI next week, and I may try to convince him I need stronger meds.
I've been somewhat depressed, teary, and anxious every since my diagnosis. I finally had my first visit with a therapist a few weeks ago to try to deal with that end of things, and I'm going back next week.
I'm considering the Specific Carbohydrate Diet- I know there isn't much in the way of research about it, but I don't know what else to do.

 

[xJillx]

Hi Arctic Alpine and welcome! I am sorry you've been struggling with your Crohn's and have been feeling down. When I am not well, I easily get blue. But that is great that you are speaking with someone about it. I think that was a smart move. It helps to talk it out. Here's a great place to do that, too!

A few members have tried and/or follow the SCD. Check out the Diet and Fitness forum for some more info!

 

[Nancy Lee]

Hello and welcome to the forum!

As Jill before me said, check out the diet and fitness forum here...
http://www.crohnsforum.com/forumdisplay.php?f=17

I'm so sorry you are going through a hard time of it
and I think we have all dealt with depression after being
diagnosed with Crohn's.

Once again, welcome..
Hugs~Nancy

 

[Jennifer]

Good luck to you! That sounds like a real pain to have a limited number of doctors to choose from because you're in another country but I'm used to that in my own country because most don't take my insurance. Try to not get too scared of the side effects too much because not everyone experiences side effects and certainly not all of them and keep in mind that there are a lot of different meds out there. I hope you find a treatment that works best for you. As far as diets go I've only tried bland diets (white meat only, white rice, steamed veggies with only a little butter and salt) while in a flare but drop all diets while in remission.

Welcome to the forum!

 

[Mark63]

Hi and welcome.

I've been dealing with perianal Crohns for a long time now. Recurrent abscess make me think that you need to have an MRI. The "gold standard" when it come to working out what is going on down there is a combination of MRI and examination under anaesthesia. Just trusting to drugs is unlikely to resolve the problem. If there are areas of trapped infection these need to be drained before the drugs can really get to grips with the problem.

Sorry, that you find your self with a poor choice of Doctors. It can be difficult to find the right one here too. Perhaps you can persist with the one that you have, but tell them that the current treatment is not working? Ask for further investigations to be carried out with a view to seeing if other treatment would be more appropriate.

Good luck with the diet if you give it a try. I've never found my perianal problems to be aggravated by the food that I eat. I do try to eat healthily and found avoiding wheat, gluten, dairy and caffeine really helped with the gastritis that I developed after being on azathioprine.

Let us know how you get on.


Mark

 

[ameslouise]

Hi Arctic and welcome!

Sorry to hear about your frustrations with meds and your current medical care situation. Do you have someone that speaks the language you can take with you to a doc to translate? I am also wondering what the occurence of Crohn's is in Israel - are there a lot of docs there that specialize in treating IBD? Here in the US, Crohn's used to be known as a very Jewish disease, but more so in Jews of Eastern European descent, and not necessarily in those of Israeli descent. Just curious.

It's normal to feel tear and anxious like you said after diagnosis. I cried for three months solid after I was diagnosed! Seeing a therapist and going on anti-anxiety meds helped me a lot.

The meds can be scary with their side effects, but you need to weigh the benefits vs the risks. It's a tough choice, we've all been there!

Good luck! - Amy

 

[hannah-rose]

Hi,
I was diagnosed with Crohn's in November 2010, but probably started having issues (perianal fissure that wouldn't heal, etc) back in 2007.

I have that too I have the dreaded 'bum disease' strain of crohns. At the moment I have a big perianal ulcer that wont heal. I'm hoping and praying that my doc can sort me out with infliximab (remicade) as it's supposed to really help. Either that or I'm destined to have a massive crater in my ass forever. Wooh!