diagnosed with crohns almost 4 months ago. New meds, Imuran and Budesonide. Anyone else on them?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tinka
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/17/2008 4:37 PM (GMT -7)   
I am very dissapointed that it is crohns I was diagnosed with nearly four months ago.
I have been having problems digesting, and also severe constipation for more than five yrs.
I had a family doctor telling me that I had chronic constipation and he would not do follow up tests....
he put me on numerous laxatives over the last five yrs, and only started taking me seriously when I lost a noticeable amount of blood and I also about 30 lbs, and I was underweight before this.
I had a barium x-ray...yuck sad , followed by a colonoscapy, and was then diagnosed with crohns.
Ever since having my daughter, who is 1 yr, my health has seemed to dissapate continuously, on at a ridiculous pace. I have major weight fluctuation and insane amounts of pain in my abdomen, lower stomach. It was every once in awhile before I had her, but ever since having her, it has become a daily thing, and there is not hardly a moment out of each day that I do not have it.
I was put on pentasa at first...
for about two months.
I never saw any help with this drug, just really big pusculous pimples, acne, hair loss, and more abdomen pain.
Been experiencing constant flareups since having my daughter a yr ago, last month I had my first hospital intervention, I was there for four days, put on cortisone in the IV, prednisone (for my hospital stay, and for the following week), as well as pentasa, I had morphine and tylenol for the pain.
 
I am now being put onto Budesonide and Imuran.
Anyone else been on them?
do they help?
How bad can the hair loss get with these ones? is there anything you can do to stop it from getting too out of hand?
what other ways can these drugs affect you?
any response would be fine, as I am still new to all of this, although I have had trouble with it, in the past, my diagnosis is recent.
 
Anyone have any other ways of dealing with this other than all of these drugs with all of their negative side affects?
anybody have success with a holistic approach?
thanks!!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/17/2008 5:41 PM (GMT -7)   
Welcome to Healing Well, tinka! I'm sorry about your recent health issues and the confirmation of Crohn's disease. I think you'll find our community to be very compassionate and knowledgable.

I have taken Budesonide [Entocort] and am currently on Imuran. Entocort helped me in the beginning but I had a flare up and needed a "bigger gun" to get my symptoms under control. Some people have great success with Entocort. Imuran takes a while to kick in. In my case it was about 8 weeks before there was evidence that it was having an effect.

All of us are different so peoples' reactions to meds varies a great deal. I had no hair loss with Entocort. I did have lots of hair loss when I was on prednisone. I was on prednisone for about 3 months one time and lost about 50% of my hair. Once I was off the prednisone my hair grew back. When I started Imuran I noticed some hair loss. Others here have had no hair loss at all with Imuran. Imuran is a folic acid antagonist so my PCP prescribed a folic acid supplement and since I began that, I have had no further hair loss with Imuran.

I do take a multivitamin every day. I try to keep my stress at a minimum. I have not seen a naturopath but others here have. Ine thing that was invaluable in the beginning was to keep a food journal. I wrote down everything I ate and noted what type of reactions happened afterward. You might see if that helps you get a handle on what to avoid to keep your symptoms to a minimum.

I'm sure others will be along with other suggestions. ~~ Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/17/2008 6:59 PM (GMT -7)   
Hi tinka welcome to HW glad to have you with us. Where is your crohn's located? I follow a low roughage diet and that seems to help .I also had resection surgery that was a huge help in getting rid of the pain as I kept getting blockages. I tkae a vitamin ,vitaminD and B-12 injection once a month as alot of us have a low B-12 level .My hair did get a little thinner when I was DX as I had also lost a lot of weight and was quite sick. I am sure others will be along to welcome you and have some input. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


tinka
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/18/2008 12:29 AM (GMT -7)   
thanks for the responses.
I was told about a food journal, but I have not as of yet started it.
I think I am going to start one out tomorrow, as it has been mentioned several times the past couple days, and there seem to be some things I eat that make me very sick afterward, or put me in a lot of pain.
Thanks for the suggestion.
To the second reply, Gail, thanks as well.
I am losing weight like crazy, and have been very sick since a few months before I was diagnosed.
The diseased area of the intestine is where the small and large intestine meet, the ileum I think.
Its an area where the nutrition is absorbed into the body.
This is going to sound gross, but a lot of times when I have a bowel movement, the food I have eaten looks the same as it does before I eat it, as when it comes out in the stool.
So I know that I am not absorbing the goodstuff from my food properly and it is causing malnutrition as well as the weight loss and loss of appetite associated with crohns.
My doctor has told me to drink Ensure, meal replacement shakes to help.
 
I am glad that there is a forum to talk about this with other people, who know something about it, because they have experienced it as well and can relate.
No one wants to find out they have IBD or any form of it, and its really hard for me to talk to others at home, family or friends about it, because as they may try to be supportive, but its harder for them as they have not experienced it.
I am still very disappointed with this diagnosis of Crohns disease and am between having gone off pentasa, and going onto the new meds, Imuran and Budesonide.
Experiencing a flareup right now. I am getting very depressed about it at times. I was hoping that what I had could be healed.
But when I got the diagnosis,
apparently that is not how it is going to go. Its the beginning of a new process, and a long one....lifelong is how it seems. (Its also hard with a having a baby whom I have to be well for.)
 
The only thing I can do is try to deal with it to the best of my abilty, and try these meds. and hope they work.
Thanks to all who respond, it really is good to be able to talk about this with others, and hear their experiences as well.
Its all new to me, and personally I do not actually know anyone who does have Crohns, I hadnt even heard of it until shortly before I was diagnosed. So this is a bit of an awakening.
Going to do the best to work with the doctor, and I will try that food journal and most likely folic acid supplement.
Thanks again for all responses.
 
 
 

tinka
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/18/2008 12:30 AM (GMT -7)   
and all suggestions too

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/18/2008 4:58 AM (GMT -7)   
tinka -

Welcome. The food journal will help you identify what you can and cannot tolerate. Don't temp fate by trying the CD no-no foods. My CD is in the same place and I now pretty much stay on safe and soft foods. Give your body a little time to determine what you can eat and you will gain back the weight you lost. I was down, oh, 40 pounds at first, from size 14 to size 8. I keep all my different-sized clothes for weight fluctuation due to CD flare.

Yes, the words Crohn's Disease frightened the poo outta me when I first heard them in my first diagnosis. You are not alone. Stick around here, I have. These folks are wonderful. :)

Are you taking vitamin supplements? You may try acidolophilus, dissolvable B12 (works real well. I take 3 - 4 of these each day) and Omega3.

Hang in there. :-)

-Leslie

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/18/2008 5:17 AM (GMT -7)   
My heart goes out to you tinka, I too had young children when i was first diagnosed with crohns which was now 20 years ago but we are sure I had crohns for a few years before i was diagnosed. I also dropped a heap of weight before we got to the bottom of it ( pardon the pun). You will get through it as much as it seems too difficult at times we are all here for you and understand how rough it can be at times. I have been on several drugs in the time I have had crohns and imuran was one of them, unfortunately that particular one brought on hepatitis for me and I ended up pretty sick. But I am on humira now and hoping so much that it works for me. Everyone reacts differently to these drugs I hope you find relief soon, take care and keep us posted
andorable
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 7:21 PM (GMT -7)
There are a total of 2,736,161 posts in 301,356 threads.
View Active Threads


Who's Online
This forum has 151449 registered members. Please welcome our newest member, iwanttocry.
284 Guest(s), 8 Registered Member(s) are currently online.  Details
bluelyme, Ides, jennydancingfish, Xmaslover, platinumpixie, Tall Allen, julymorning, Peter A


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer