Recently diagnosed, starting meds, scared

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howardfan

Joined
Dec 7, 2011
Messages
6
recently diagnosed, starting meds, scared

hi all,

I was recently diagnosed with crohns after my colonoscopy. My GI put me on Budesonide which i'm planning to start tomorrow. Had digestive problems for years but just ignored em and tried to live with it. I've lost around 50lbs over the last 2years mostly because I cut out a lot of foods, skip meals (cause i want to sleep) and exercise daily. My doc said the inflammation is mild but I also have sores on my ileum.

Very happy to find this forum and also very very very freaked out to start Budesonide tomorrow. I've read all the posts from members here about the med and worried bout the side effects cause my body has never handled drugs very well. Anyway just venting a little here and once again happy to find this place and hopefully as I read on and start this med things will start to seem brighter.
 
Budesonide is a great drug, you shouldn't worry yourself, once you and your doctor find what's right for you, you can get back to life.

They say patience is a virtue, well it couldn't be anymore truer with this ailment. Good luck!!
 
Hi Howard and welcome to the forum.

I know you're scared right now. That's completely normal. :hug: Hang in there, though. You will learn that everything is gonna be okay. And the drugs like to try and scare us, but ultimately they are what help us to feel so much better.

Do you still exercise? We have a great forum on fitness here. http://www.crohnsforum.com/forumdisplay.php?f=17

I hope you find some peace of mind here among the family of Crohnies. We're all in it together.
 
thx for the advice and warm welcomes. I still do exercise and found some good posts in that forum. Was concered that working out was making the inflammation worse but after reading, that doesn't seem to be the case. I usually exercise in the AM so I just have to be careful to do everything very modestly after i wake up cause it seems that's when my body is most sensitive. Any large amount of stress or poor food choices b4 noon and my day typically goes downhill very fast.
 
Hi there and welcome! I can understand your concerns and I'm so sorry you're having to face such fears. It sucks :(

At least you have a diagnosis and treatment plan though :) Has the doctor by chance checked your vitamin and mineral levels such as vitamin D, vitamin B12, magnesium, etc?

I wish you well. We're here for you anytime!
 
Hey! I don't have any experience with that drug but I just wanted to welcome you to the site! You'll find lots of great, helpful people here so I hope you enjoy your stay and feel better soon!
 
thx everyone again for the warm welcome :)

@David - Looking at my last blood tests I see a Comprehensive Metabolic Panel was taken which includes a lot of the routine tests (all within normal ranges) but I don't see any vitamin D, vitamin B12 or magnesium listed. Should I ask to get these tested?

Another ? bout Budesonide and what it's going to do to my immune system. Over xmas I will be around a lot of family and little kids. Kids are always sick and I'm worried if Budesonide is going to weaken my immune system should I be concered being around people with colds n flus?

One last question. My father is telling me to get a 2nd opinion. The GI I see has around 30years experience and a lot of high credits in the field so I somewhat trust his opinion. Has anyone here went this route and do u think it is a good idea? I really don't want to piss off my GI by telling him I need a 2nd opinion but my father thinks having a panel of doctors review my condition is better than just 1.
 
howardfan said:
Looking at my last blood tests I see a Comprehensive Metabolic Panel was taken which includes a lot of the routine tests (all within normal ranges) but I don't see any vitamin D, vitamin B12 or magnesium listed. Should I ask to get these tested?
Click to expand...
I would! At the very least the B12 and Vitamin D. Both are VERY common deficiencies and proper supplementation can make a huge difference. Here's some reading on vitamin D for you.

howardfan said:
Another ? bout Budesonide and what it's going to do to my immune system. Over xmas I will be around a lot of family and little kids. Kids are always sick and I'm worried if Budesonide is going to weaken my immune system should I be concered being around people with colds n flus?
Click to expand...
I just did a little research and it's currently inconclusive if Budesonide increases risk of infection based upon what I could find. However, one of the "common side effects" of budenoside is respiratory infection so take that info as you will.

howardfan said:
One last question. My father is telling me to get a 2nd opinion. The GI I see has around 30years experience and a lot of high credits in the field so I somewhat trust his opinion. Has anyone here went this route and do u think it is a good idea? I really don't want to piss off my GI by telling him I need a 2nd opinion but my father thinks having a panel of doctors review my condition is better than just 1.
Click to expand...
I don't see any issues with a second opinion and you don't even have to tell your current GI you're getting one if you don't want to. But in the end, the decision is yours and yours alone.
 
Hi Howard and welcome to the forum, it's a great place to be for help and support. I'm pleased to hear you are being started on Budesonide rather than a more 'invasive' steroid like pednisone. I hope things go well and you start to feel better soon.
 
hi again,

Quick question. I've been on Budesonide(9mg/day) for 5 days now. Would it be safe for me to stop cold turkey? The more and more I read it seems that once and if my condition goes into remission I will have to change my diet to ensure I don't trigger anything. So I'm thinking if i'm going to have to change my diet anyway why not just skip the meds and start something like the SCD diet or something similar.

I know I should probably speak with my GI 1st but I'm pretty sure he would just want me to stick to his plan. My guess is it would be ok to stop the Budesonide since i've only been on it for such a short while.
 
Hi Howard, I have been on budesonide since June. I started at 9mg a day and tapered to 6mg in September and will taper again to 3mg at the end of the month. The only side effect I noticed was I had trouble sleeping at first. The extra energy was nice, I had been so run down! My GI tends to rather conservative with the meds, he added 1500 mg Pentasa in Sept. I am still not in remission, so I fear more meds will be added.

My understanding is that Crohn's will continue to get worse without the meds even if you are not having symptoms...maybe someone here will have more info. I would definitely speak to your GI before stopping any meds.

Carol
 
Hey there. Welcome to the forums here.

I've been on Budesonide and it's designed as a fairly short to medium term drug to help you get things under control quickly...likely for the holidays. If I were you I'd think about what if you didn't get the diagnosis or treatment so quickly and you had to suffer without any for the holidays? I don't know it helped me anyway.

Budesonide isn't an immunosuppresent as far as I can remember so the increase in colds/flus and that sort of thing shouldn't be seen with this. Even with those immunosuppresents I went through hockey dressing rooms, high school and university with them and never really saw myself getting any more sick than normal although individuals will vary on that.

Best of luck and have a happy holiday season with your kids.
 
I always read about people being on Budesonide tapers here, but I stopped cold turkey and had no problems. I was told to just stop taking it.
Regardless, you REALLY should talk to him before changing your med regimen or deciding a new treatment plan on your own. Really. Even if it's not an appointment, at least put a call in to speak with his nurse.
 
thx everyone for the info. Today is day 2 w/out Budesonide and I feel ok. Last night had a headache which I usually don't get + couldn't fall asleep for awhile even though I was exhausted. So nothing really major. I will plan to speak to my GI soon bout my decision. I just feel trying a new diet 1st is best for me since I hate meds, I was told my crohns is mild and all the positive reviews I've read bout getting better after following a strict diet. Not planning to start the diet until new years since I'll be round family for a week during xmas and I'd rather wait until the stress of the holidays are over. :)
 
This is entirely just my opinion but id strongly consider staying on it through the holidays. I'm assuming like most people here there will be a big dinner or 2 and I'd hate for something to become extremely painful or become worse in the middle of holiday season when seeing a GI isn't always the easiest of tasks.

I was diagnosed with mild Crohn's 4 years ago, due to improper treatment I am now on Imuran and Remicade and now have an entirely changed life. In my opinion its better to nip it in the bud before anything gets worse. Just my 2¢
 

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