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Pre Op Blogger. [09 Sep 2011|10:35pm]

surgery_wannabe
Hello Y'all. I had a bit of a brainwave while I was in hospital to account all my experiences on a website such like this, since I'm having the operation to have a stoma pouch put in on on the 21st September. I'm really doing a shout of for anyone who's worried about the med's they are on or if they are in a similar position with surgury looming over to add me as a friend and have a natter or read my blogs. You're not alone, and I hope that in the coming days my experiences will be down on this website to perhaps help other people worried about this horrid condition.
8 comments|post comment

skin reactions to azathioprine [03 Aug 2011|11:07pm]

prettybutt
So I take remicade and azathioprine (imuran) for crohn's. When I first started taking azathioprine I had a bad reaction to it. I felt so weak, my muscles ached, and once I was out of the hospital and in daylight I started getting rashes wherever my skin was exposed to the sun. So the fun side effects eventually calmed down once I was on it for a few months and I was pretty faithful with taking it up until the beginning of July. I ran out of pills and just didn't bother refilling it-so I went close to a month without taking it. Finally got around to getting more and I started it last Tuesday. By Thursday I had the most itchy rash on the tops of both my forearms. Looks like hives, just red inflamed pores. I went to see my PCP, and he thought it was an allergic reaction to laundry detergent (I had just washed my sheets the night before, but our detergent is hypoallergenic-same brand we always use)--he told me to take benedryl which helps some, and a steroid cream, but it is still very itchy. He told me not to stop the azathioprine because he didn't think I would react this way if i was on it for so long before. I stopped it last night and made an appointment with a great dermatologist out of boston, but have to wait until Monday to see her. Has anyone else had a similar skin issue with this drug? Any suggestions?
2 comments|post comment

Back again with a question [23 Jul 2011|02:49pm]

die_fledermaus
Hi all,

Still haven't been able to get my colonoscopy, but getting closer. I hadn't had cramps for a while, and it seemed like it was because I wasn't really eating solid food, or at least, only very small meals. Actually, I haven't been eating much in general. Then yesterday I went out for a friend's birthday and had one chicken kabob and some cantaloupe with prosciutto. Today, I have the bad cramps again.

I'm just wondering, do you all find that certain foods make you flare up? I'm thinking what I had yesterday was so different from the diet I've had for the past month that my stomach couldn't handle it or something.

Just wondering. Thanks :)
3 comments|post comment

My treatment at Breakspear hospital and other things you can do to help ME/CFS and IBD [18 Jun 2011|12:47am]

redtoffee
Breakspear Hospital

The truth is, I do recommend Breakspear. I will tell you the truth and see if you want to go down that path. You can read my journal entries here to find out what I have been having done at Breakspear. Although I do need to update for this year. http://www.caringbridge.org/visit/lauradunks/journal

Read more...Collapse )
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Freelancers Insurance [05 Mar 2011|11:19pm]

mithrin
Hello all:

I was wondering if there is a freelancers insurance that covers Remicade. I am working on finding an alternative to the drug, but if I have to stick on it I'd rather not have to depend on a job I hate -pipe dream of course-. Any suggestions or those who have a freelancers insurance that covers it?

Thanks
1 comment|post comment

Hey [30 Dec 2010|07:50pm]

mithrin
I always feel guilty because I post in here only when I feel like no one else would be able to get how I feel -in other words, the rare times when my Crohn's is acting up-.

Very stressed right now -I've had Crohn's for eight years so trust me when I say I know stress is bad-.

I have no urge to eat, I am literally buying food because I feel like maybe it would help -I know it is good to drink electrolytes. If you're not hungry eating empty carbohydrates won't make a difference-.



Normally, I contact my GI and he signs and I get my infusion. However, my GI is not affiliated with the GI at NYU's infusion center.So there is another GI who receives whatever note, signs, and then I get my infusion. The whole process, frankly, confuses me. But I am assured it 'works.' Well, no one bothered to tell me that their procedure changed about two weeks ago. And now, even though my GI signed OVER A WEEK AGO and faxed the forms giving his consent I have to go see the GI -not MY GI- at NYU's infusion center before I can get infused.

RANT:

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END RANT:
It boggles my mind to be honest. How come I can get on insurance -I was on COBRA before- which will approve my Remicade. I have insurance and money to pay for the insurance. EVEN A DOCTORS APPROVAL. Yet I have to suffer and wait. What the heck is wrong with our system? I get it, I should have planned for this, but I am so damn busy I'm literally calling my new insurance for questions while I am walking to another job.

Help? Suggestions? Anything Please.
4 comments|post comment

Prescribed Welchol [02 Nov 2010|02:44pm]

ophia921
[ mood | depressed ]

Just wondering if anybody else has been prescribed Welchol for their Crohn's? If so, has it helped you any? What is your dosage?

I was concerned about my daily bathroom trips and my gastro has put me on this. I take 2 pills (625mg each) in the morning. Just started this morning.

3 comments|post comment

Colonoscopy not completed... [21 Oct 2010|06:56am]

bluesgreens
HI everyone, I'm looking for a bit of advice.  I've had diarrhoea & abdominal pain constantly since April, with one period of 20 days of very severe diarrhoea. I had an appointment with a gastroenterologist who referred me to have a colonoscopy to look into the possibility of Crohn's disease.

I had my colonoscopy yesterday but unfortunately the doctor was unable to finish it.  I had the maximum possible amount of sedative but the pain was just unbearable when he got to one spot and apparently I was moving around the bed a lot making it unsafe for them to continue.  I'm still in a fair bit of pain today.  Has this happened to anyone else?  The doctor says it is not uncommon, especially for people my age (24) but to be honest I feel like a bit of a failure because people have these tests all the time without any fuss and I must just be a wimp? I'm more disappointed and angry at myself because I thought I was going to be a step closer to finding out what is wrong.

Anyway, the doctor has referred me for a barium x-ray instead.  Has anyone had one of these?  Is it true that it's harder to diagnose froma  barium x-ray than a colonoscopy?
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Evidence of Teh Crazy. [07 Oct 2010|10:43pm]

addyit

(yes, you don't need to tell me. i'm crazy. hence what i've researched, written, and put here to share with you).

Foreword: If you have a normal, healthy immune system (as most people do), are not taking immunosuppresants, or constantly exposed to high levels of regular antibiotics, you won’t be interested in anything I have to say. Bounce off and enjoy your day. Even better…. Go take a shower. (And I MEAN it. Hypochondriacs, don’t waste your time. This does NOT apply to you if you don’t have CF, Crohn’s, HIV/AIDs, etc, or aren’t taking medication to counteract/counterbalance these things.

Also: HIV/AIDs patients are more likely to catch MAC from a showerhead than a CF patient. I don’t know about Crohnies. I’m an oddity, since I have both. People on immunosuppressants should take a peek, i think.)

Well, I’ve done some research with my family. I’ve contacted my GI, my respirologist (who, in turn, contacted my CF clinic associate’s microbiologist). I got emails from all three, which made me very happy since it was very unexpected.

 

Long Answer. Collapse )

 

Short Answer.Collapse )

 

Thank you, DrL, DrW, DrR… and the mountains of pages that we’ve gone through. New studies are VERY interesting.

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Micro-Organisms in Showerheads. [23 Sep 2010|03:29pm]

addyit
i found out about this a while ago, and i thought it would be interesting to share.

www.arthritistoday.org/news/shower-heads-bacteria002.php

i didn't read this specific article, but it holds the same information. since i have MAC, and have been on Remicade, i wanted to pass it on. :-)

my family and i have decided to change my showerhead on a yearly basis, and use metal... just in case.
4 comments|post comment

Suppositories [23 Sep 2010|02:01pm]

mackeezer
[ mood | annoyed ]

My gastroenterologist recently prescribed both hydrocortisone acetate and mesalamine rectal suppositories. Somehow or other, I've managed to go with a Crohn's diagnosis for 9+ years without needed suppositories, but that time seems to be up.

Anyway, suppositories tend to leak, and then stain my underwear and shorts/pants. I could care less about the underwear, but the shorts and pants are a different story.

Anyone have suggestions as to liners? I am a guy, so I'm not really familiar with "pantie liners". I have no problem buying a "feminine" hygiene product if I need to. I just don't know what to purchase! 

4 comments|post comment

Anal Bleeding [20 Sep 2010|12:47am]

mackeezer
[ mood | groggy ]

Hi Crohn's folks,

Lovely question concerning anal bleeding. I can't get it to stop after going to the bathroom. I'm an old pro at Crohn's now (diagnosed in February 2001, had surgery, been on every medication and then some). My disease is in the terminal ileum area, which was removed. For the past few months, I haven't been able to stop bleeding when I go to the bathroom. I always use Tucks pads and have for years, because toilet tissue and wiping easily makes fissures worse. I also now have rectal Hydrocortisone suppositories. I also take Colace to keep stool softer so it doesn't tear me apart, and I stop taking it if I start getting diarrhea.

Short of not eating so I stop defecating, I don't know what to do. Any suggestions? I just recently saw my GI but I think I'm going to call her tomorrow and see if she has any thoughts. 

Thanks :)

9 comments|post comment

Remicade and Tooth Decay. [06 Sep 2010|01:47am]

addyit
i'm curious, since i don't think any of the patients i've met in the past, at my IV clinic, experienced this.

once you started your infusion therapy, did you experience a sudden onset of tooth decay? did you need, say, gum disease, cavities, root canals and crowns?

when i started mine, i had two root canals and crowns in as many years, and had to have an old one redone. i never had good teeth, but two in two years, after a 12 year lapse from the first? (it wasn't as though i was avoiding the dentist, either! ;-) )
6 comments|post comment

introductions. [06 Sep 2010|01:31am]

addyit
hello, all. i was looking for a group, and this one seems to be the most active. (it was only once i joined that i saw there were so many other groups people are cross-posting to! this is great!)
my name is Addy, and i have fistulizing crohn's disease. i've had it since i was ten, but i was formally diagnosed at 23 during a particularly bad flare. it's been flaring ever seen.
i also have cystic fibrosis.
let's see....
i have been on Remicade in the past, managing over 20 infusions before it became less effective. things seem to have settled (crossed fingers), and i take azathioprine (125mg) to keep it in remission. it seems to work well. i'm also on TB medications for an ongoing MAC lung infection, so perhaps that is having an effect on my current state.

it was a frightening experience to have that first Remicade infusion, and experience the utter silence of a painless body.

my GI guy (lovely man) has suggested to me that i might be able to try Humira if it flares again. i have no experience with it, so i was curious as to what people had to say about it. i know it's self-injecting, and i know it's said to work "better" with humans. what's the verdict?

(i usually write in a dreamwidth journal, which i crosspost into my regular journal, when talking about medical issues. i know i can't use it to crosspost into here, but that doesn't matter. i just thought i'd mention it. :-))

anyhoo. hello!
7 comments|post comment

Understanding Inflammatory Bowel Diseases - Louisville, KY [02 Sep 2010|03:46pm]

ophia921
[ mood | blah ]

I'm sure most of you are not anywhere remotely close to here, but I thought I would post anyways. The Kentucky Chapter of the CCFA is putting on this educational program at the end of the month.


Tuesday, September 28, 2010

Jewish Community Center of Louisville

Guest Speaker: Dr. Gerald Dryden, University of Louisville

5:15pm, Check - in

6:00pm-8:00pm, Program

Jewish Community Center of Louisville is located at 3600 Dutchmans Lane Louisville KY 40205

-----------------------------

Registration is required

Register Online at http://online.ccfa.org/site/Calendar/214915573?view=RSVP&id=108881

Or

Email Jenny Silberisen at jsilberisen@ccfa.org

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Who else here has successfully quit Remicade forever? [11 Apr 2010|05:56pm]

mithrin
Hello,

I normally post in here when I am sick, and, to be honest, I feel pretty good. I am due next week for an infusion and I suspect I'll get it in time.

My question to the group is directed to those who have quit Remicade successfully. I tried this once during college and suffered extreme fatigue. My GI wants to switch me from Remicade to a higher dose of azathioprine. This switch is not completely unguided, however. I had a colonoscopy that revealed no signs of inflamation. I also had blood work that revealed me to be in good health.

For years now I have been on 50 MG of Azathioprine, one pill twice a day. My GI switched me to a total of three pills by mouth a day - I cut one pill in half-. He did blood work recently with positive results, so now I am on two pills twice a day. I am tempted to believe I do feel less fatigued then I normally do around this time, however, the fatigue and indegestion is still present to degrees.

Anyways, has anyone made a similar switch? How was it? I very, very, very much want to be done with Remicade. It has been a plague on my life for the last six years. I have had thoughts of living outside of the states. I am sure most of you know the nuisance of trying to do that.

Please, be open about this. The long term affects of Remicade worry me, and I do not want to be trapped on it for forever.
2 comments|post comment

wish me luck... [31 Mar 2010|09:17pm]

heysuperman
started on Asacol tonight. hope the side effects isn't worse than the pain of having crohns.
7 comments|post comment

[29 Mar 2010|03:05pm]

noseofdestny
Re: my colonoscopy

I scheduled it for late April, my mom doesn't know about it (my dad does and is a good secret keeper), and I will tell her once it's over. No big deal, crisis averted!



Re: something new

Last time I had a flare up (10 years ago) I was on Pentasa and, as I remember it, I had a bad reaction to it (cramps, diarrhea, the works). Now that I'm flaring up again, my new doctor wrote me up a prescription for Pentasa, despite my claims that I've had a bad reaction before, and insisted that I not be stubborn and take it.

I started it last night, and took two doses. I woke up this morning at 5 am and have been up since, feeling totally incredibly nauseous with recurring cramps and unrelenting trips to the bathroom. Basically, lots of pooping and barfing.

Moral of the story: don't let your doctor bully you into doing something you know will be bad for you.

Any tips for the nausea?
3 comments|post comment

getting worse [28 Mar 2010|08:43pm]

heysuperman
so lately i have been having pain weekly and diet isnt helping. any new treatments out in the last year or 2? any pain meds that help?

Posted via LiveJournal.app.

8 comments|post comment

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