When to worry

Hi, I was diagnosed with Crohn's about 6 months ago. My crohn's doc put me on prednisone and pentasa right away. Around the same time I was told that I have to under go sergury for another complication with my body. My family doc recommended that I wait till I was off the prednisone before going through with the sergury. When I seen the crohn's doc and told him that I have other sergury to get done and that I need to be off of the prednisone for the sergury, he started to wein me off of it one pill a week for 8 weeks.
I am now off the prednisone and having a lot of problems with my crohn's. I am scheduled for the sergury at the end of this month but don't know what to do about the crohn's issues till then. I'm in and out of the washroom constantly, I'm in utter agony when I'm working (I'm a security guard and do a lot of walking). I get bloating and cramping constantly. I just feel like crap all the time.
What I was wondering is if I'm off the prednisone and having flare ups, when should I go see a doc. Is there a point where it's past just the diareahh and flare up part and can become a health risk? The crohn's doc I'm seeing doesn't seem to give me very much information and there is a language barrier too.

Hi Chikiee.....My surgeon was very reluctant to perform surgery on me for Crohn's issue's because I was on large doses of steroids. The steroids, from what I was told, make the tissue very friable.....Can your surgery be postponed at all?

There are many other meds you can be on other than a steroid. I would ask the GI for some help and further recommnedations....

I did end up undergoing surgery while still being on steroids and everything turned out fine
....I would also recommend that you have a consult with the surgeon to see what his/her take is on the whole situation...If they are removing body parts versus trying to reattach bowel to bowel, the situation may be completely different....

I am sorry you are feeling so bad....The diarrhea can become a health risk if you become dehydrated, your electrolytes become imbalanced or you start to become malnourished.....I would imagine the surgeon would want all of these thing to be normal before he did any surgery. They could impact your ability to heal post-operatively...Good luck, I hope you get some answers and relief.

Hi Chikiee, another Canadian Crohnie welcome! I know your feeling but what ever surgery you have you still have to keep your Crohn's in check. I am not a doctor but I know from my own experience unless it is emergency surgery, being infected with Crohns you could ask your doctor for Antibiotics, it will help keep it in check til at least your surgery. Won't hurt to ask, it might if you dont. Keep us posted and how you get along.

Hi Chikiee and welcome to the Forum!!

It sounds as though there is mis-communication between the two doctors.
You need to be on something..even antibiotics until after your surgery.

Please keep us posted and I wanted to let you know I am
only a 40 minute drive down the 401 from you!

Healing Hugs~Nancy *Waving a hand from Windsor at ya!*

The surgeons don't like performing surgery if your on Pred.

I was in a similar situation last year.

But you obviously need more than Pentasa.
Your doc needs to move you up to the next level of drugs, even for the short term.
I was on 6-mercaptipurin for a long time and it worked well at the start.

It's not as expensive as the next level up, so he might proscribe something similar to this.

You need to take control with the doc. Sometimes they will think your happy with your treatment, you might even exargerate your symptoms to him.

Then they take notice.

You need to be in full health when you get your surgery. Good luck and stick around here.
I found the advise here really helpfull.

Thanks everyone for the advice, it really has helped. I plan on calling my doctor on Monday and asking him if there is something else I can take that will help. When I went and seen him last I did tell him I was having problems being off the pred and he didn't recommend anything else i could take. This doctor doesn't really give me much information. I asked him about Vitamin D and if it helps with flare ups and he responded with "No it's not a cure for crohn's" (language barrier). I tried to explain to him that I didn't mean it was a crue but that it helps with flare ups and I don't think he understood what I was talking about.
But thank you all again.

You need to see a Gi specialist or Internist at the very least. If your doctor doesnt tell you much it's usually because they dont know.. Vitamin D3 has been proven to help all diseases not just Crohns. Not a cure, of course, but you need to see a specialist and asap. A nutritionist (good ones out there) who knows about diseases are very helpful. My nutritionist knew more about my Crohns and the symptoms then my own GP. Get all the facts of your symptoms and go from there. Hope you feel better soon.