New member - looking for answers

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debijo65
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 2/27/2008 9:50 AM (GMT -7)   
Hi... I'm new here... been lurking since Sep 07 when I was first dx with CD.  At the time, doc prescribed entocort and 6mp - took the entocort but refused the 6mp due to the very scary side effects.  Lost my job shortly after and never had a chance to get back in to discuss alternative treatments. 
 
Just released from hospital yesterday due to flare caused by c-diff infection (caused by antibiotics).  Now doc and I have agreed to Sulfasalazine and entocort for treatment. 
 
I've only had a few flares ever... both caused by c-diff infections.  No daily symptoms - hardly ever had diarrhea - rarely have pain.  So I definitely did not want to take a strong medicine right off the bat.
 
I guess my questions are as follows:
 
Has anyone seen success from sulfasalazine?
 
Do all CD patients ultimately have surgery?
 
What about diet?  special rules?
 
I also have gluten allergies - does anyone else have these issues?
 
what are some good pointers in dealing with this and working full-time?
 
I look forward to your feedback.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/27/2008 10:26 AM (GMT -7)   
I can tell you that I still am new here also. I have been on Azulfidine (sulfasalazine) since October & it was working fine for me for about the first month. When I was taken off of it to see how I would do, I began having problems again. So I am not sure what dose you are on, I am on 500 mg 3 x a day. They said they are either going to change me meds completely or just up the Azulfidine & also put me on prednisone for a while. I have been having all kinds of problems, though.

I can't really help you out with how to work full-time & deal with this. I have no answers for you on that end. I am still learning myself, but thought I would share with you my experience with sulfasalazine.
Live for today, for tomorrow you might just get hit by a semi.


Mary T
Veteran Member


Date Joined Feb 2005
Total Posts : 983
   Posted 2/27/2008 10:42 AM (GMT -7)   
Working full time with Crohn's is tough but it can be done, many of us here are still doing it. I guess the most important thing is to have an employer that understands your situation and your special needs. I'm finding that more and more people are fimiliar with Crohn's which makes it easier for us. I hope you find a job with a great boss who will understand that there will be days when you won't be able to get to work.

I'm afraid that I haven't personally had any long term results with most drugs except maybe for Imuran. I think I have been in remission for quite a while now.

Hope you find a great job and good drugs. All the best.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/27/2008 10:48 AM (GMT -7)   

Hello and Welcome to Healing Well.  If you have been reading you have probably discovered by now that thiis group is wise and caring.  They all come from different walks of life and have a wealth of information to share.

There are several topics on diets already on the boards if you would like to browse through them.

I am sure you will meet other members with words of wisdom for you.

Again Welcome to the Crohn's Forum.

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 2/27/2008 2:03 PM (GMT -7)   
Hi, Welcome to the board :) I'm new myself.

Just wondering why your doctor prescribed the meds he did (esp. the 6mp). Why didn't he start you off on a 5-ASA first or something?

I can't answer your other questions but as far as diet goes, it seems everyone is different. I may be able to eat food A while you are completely unable to. A lot of people have success with the SCD diet though.

Good luck with everything :)
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa
?? Budesonide (waiting for meds to arrive)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/27/2008 2:07 PM (GMT -7)   
No not all Crohns patients wind up in surgery. I think the figure is about 80%, but milder cases with no stricturing or fistula problems often go a lifetime with no need for surgical intervention. From your description of symptoms and history yuo may well fall into that lucky group. You are on a fairly low-impact medication, and that is also a good sign if it gives you long term relief from problems, as that would indicate fairly mild disease as well. I think you'll find this forum very informative, so drop in often!

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/27/2008 3:36 PM (GMT -7)   
Welcome!
I find when things are under control with my medications I'm able to function pretty well at work. I do have to do the odd mad dash to the washroom, but things are generally OK.
I did have a few extended flares which were hard to get through a work day with. My bosses were aware of my health issues, so were not alarmed when I was beating a path to the washroom, and I struggled in almost every day even though I felt horrible so that if I missed time, they knew I was really sick.
Now I've started a new job and very few people are aware of my health issues (I figure I'll prove myself first then let them know once they like my work). I do find myself more self-conscious of any of the negative social effects of this disease, as I'm undergoing a bit of a flare and my gut is letting others know it exists..if you know what I mean. The worst part I've experienced is the unexpected absenteeism from hospitalizations, but since they're unavoidable, I've learned to live with them and try to make sure I only miss work when absolutely necessary. (I'm one of those annoying people who comes to work with horrible colds etc. - my theory is that if they send you home sick, then the next time you're off they realize you must be really sick)

Golfster
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 2/27/2008 4:26 PM (GMT -7)   
I was on azulfadine for about 10 years 1974 to 1984.  Doctor switched me to asacol because of less side affects.  Three years ago I started bloating. I am now in the process of getting off entocort because it is not good drug for long term use and have started humira.   Azasan did not work for me.  Up until 3 years ago even though the crohn's was extremely active I was asymptomatic and ate what ever I wanted.  I'm now on a low roughage diet.

debijo65
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 3/1/2008 8:25 AM (GMT -7)   
UPDATE: First of all let me thank everyone for the information. This site has been so helpful to me. I am almost a week into my meds and feeling much better. So far the only side effect from the sulfasalazine is that I pee dark orange... LOL... I've taken Entocort before so just adjusting to the horrible night sweats again...

Megara - not sure why doc did not put me on the 5-ASA drugs first. I fought for that but he had his own ideas. He even mentioned Remicade while i was in the hospital but so far the sulfasalazine is working so I'm holding my ground with him. If he's not willing to work with me, I'll just find a new doctor. I'm not opposed to that... I'm the only one who will fight for my health.

Anyway... so far so good... I'll keep you guys posted on my progress.

crohnie_boy
Regular Member


Date Joined Aug 2007
Total Posts : 29
   Posted 4/9/2008 2:50 AM (GMT -7)   
Hi Debijo65
Glad to hear that you are going better. I have been on sulfasalizine for 14 of the last 20 years as a maintainance therapy. I had relapses in that time mainly because of non compliance with taking the medication. After a few years of taking the medication(+/- 5years) I would develop really bad thinning of my skin on the back of my hands to the extent that it would bleed. I also would get migraine headaches , first it was once or twice a month, then over time it became almost everyday, my GI doctor then put me on Pentasa which is a similar drug but without the sulphur,the side effects are a lot less.

I am also gluten intolerant, and have been gluten free for the last 4 months and my symptoms are improving.
All the best
 Hi I'm crohnie_boy
 33yr old boy . Diagnosed @ age 14 ileocolitis crohn's.
 Taking Pentasa 1500mg twice daily
 Try to keep smiling ,but hard sometimes


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/9/2008 4:24 AM (GMT -7)   
If you are peeing dark orange, you are not drinking enough water. You need to drink a whole glass of water with your Azulfidine. It will darken your urine a bit, but it certainly shouldn't be dark orange!
Live for today, for tomorrow you might just get hit by a semi.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/9/2008 7:57 AM (GMT -7)   
Bentwhistle, I think you need to reassess how your employer views employees who come to work when suffering from an infectious disease. Instead of assuming that your employer will view you as loyal, hard-working and strong, consider this. When an employee is demonstrably sick enough with a cold, flu or other infectious disease to be sent home, they have already exposed co-workers to the same disease that is causing them symptoms. As a manager who has had to deal with these situations, it has been my experience that this behavior is viewed negatively and, rightly or wrongly, the employee is often labeled as being self-centred, not as a good worker.

Debijo65 and Megera: Your physician may be a subscriber to the top down theory which is gaining broad acceptance in the medical community. It is based on research that is showing that patients have much better outcomes in the long term if crohn's is hit at its earliest stages with the strongest arsenals in the medication war chest. The theory, I think, is that even when the symptoms of crohn's abate, the disease is often still doing damage at the cellular level that eventually is irreversible. By the time the symptoms worsen or change, it is too late.

Just a thought.
Belleenstein:

30+ years living with Crohn's.


Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 4/9/2008 11:18 AM (GMT -7)   
Before I was DX'd with Crohn's disease I was given azulfadine for a kindney infection. It was like a miracle had happened and the pain in my belly was gone completely within 2 days. Problem was after 3 days on it I broke out in wide spread hives and ended up having a severe allergic reaction to it so no more for me.
After the pain, diarrheal and vomiting came back it was over a year before I got the CD Dx. The worst part was being 5 months pregnant and having surgery to find out what was causing my obstruction, the next worst part was 2 months later having a resection done at 7 months pregnant. It saved my life though and the life of my healthy 24 year old son. :)
I hope it works for you!!!!
Dx'd with crohn's 1983, resections 83,85 and 89 Double Strictureplasty 2005, Dx'd COPD 2000, Psoriasis 2002 and Fibromyalgia 2005.
Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Oxycodone and Xanax as needed


Goldi76
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 4/10/2008 6:12 AM (GMT -7)   

I was diagnosed in 2003 and have not yet had any surgery.  I have a great Dr who has me on Pentasa & Azathioprine, which is an immunosuppressant.  At the moment I will be on them both forever. 

Apart from a sudden hospitalization in 2006 I have work full time for most of the time since my diagnosis.  The hardest part has been learning that I have to restrict my social life sometimes in order to make it to work.  Gradually I have found I am able to do more as my disease remains under control.

I also have to be careful with Gluten, especially anything with MSG.  The only way to know what foods work for you is trial and error.

 

 

 

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