New here!

Hi Everyone!

Thought I would introduce myself to the forum. I hope that the forum will be a source of support during this horrible time in my life. I was recently diagnosed in the last 4 months with crohns disease . I've had symptoms since 2006(age 19, now 25) but none of the doctors thought anything of it. I had a colonoscopy in 06 and they found inflammation but the doctor never followed up and didn't say anything was wrong with me just said i had the "warning" signs of ibs. Well I had diarhea,cramps,fissures. Two months after the birth of my second son i got a blockage and didn't know what it was i was screaming in pain after weeks of being in pain it got so bad that i started to throw up. So I went to the emergency room and had a mri and thats when they said they found the crohns and the blockage. I spent 3 days in the hospital and went home on a ton of antibotics,asacol,potassium. Later i was put on predisone and then entocort.

Well after 2-3 months of being on the predisone i can't honestly say I hate taking it and my hair is falling out,acne and now i have moon face. I have an appointment with my gastroentrologist today to discuss my concerns. The last few times i discussed my hair falling out,cramping not getting better and my anxiety making my cramping worse. The doctor didn't really have anything to say at all. So I am hoping it goes better or i will be looking for another doctor.
I really don't know how to deal with being told i have a disease that will never go away or be cured. Its been made even worse lately now that i look like chipmunk.

Hi Lola,

Thanks for taking the time to introduce yourself! You poor thing, you're certainly having to deal with a lot Many *hugs* your way.

I know what you mean about doctors not thinking anything of it. I really had to take charge and demand certain things which led to my diagnosis. So frustrating. I'm glad you're not putting up with the BS and are willing to switch to another doctor if need be. Stay strong in that regard, there ARE lots of good doctors out there.

I don't have any good advice beyond that but wanted to welcome you and let you know we're here for you anytime!

Hi Lola and welcome!

I hope the Pred is at least making you feel better, in spite of the side effects. You and your doctor shoudl work out a long term treatment plan, though, because you can';t be on steroids forever. Are you still on the Asocol and is it working?

Good luck with your appt but if you don't feel comfortable with your doc, keep looking for one that you like and can communicate with.

- Amy

I went for my appointment today and took my husband along as support. The doctor said that he had never heard of any of my medications making a persons hair falling out and said to take 1000mg(or something like that) of zinc. So i will be trying that because my hair is clogging up the drain bad. He has now said to wean myself down to 10 mg of predisone for two weeks then 5mg for two weeks then stop. I have had stomach cramps today (not terrible ) and my stomach is tender when he pressed on it. I'm still taking 800mg asacol two pills twice a day so 2400mg i think. Also taking 3 entocort in the morning. I just hope I don't start getting pains agian like last time but he said that we would try another medication if i started to get in pain agian. I also am making an appoinment with my primary physcian to talk about my stress because i've been crying alot and not been able to handle just everything thats going on. I started crying at the appointment while my husband asked about me going on medication for my stress. Its hard for me to talk about it without getting upset which makes it hard to bring it up. So hopefully my appointment with my primary will go better. I cramp alot more when i get stressed out. I have never had vomiting or bleeding and my colonoscopy came back really "clean" i just had inflammation although he said i was so swollen he couldn't get into my small intestine. So i don't think i have it bad.

I also asked how long I would have to be on the asacol and entocort and he pretty much said for the reset of my life that if my colonoscopy in two years goes could i could possibly get off of it but it would probably be unlikely. I hate taking medication especially since you get all these side effects and not a ton of relief. Hopefully I'll get relief soon.

Hi Lola and welcome! First off, if you don't feel your GI is taking your concerns seriously, find another doctor. I know it may seem like a hassle, but it will be worth it in the long run.
Also, if while you start to taper down off the pred symptoms start to return, don't hesitate to contact your GI. You may have stepped down too quick. But I hope you will be able to come off without a problem. Good luck!

Welcome aboard!!!!

I echo what the others are saying, I have had 3 GI docs since being diagnosed in 2006, two good ones and one bad one. Don't sweat changing doctors if you do not feel you are getting an appropriate level of service.

Hiya Lola
and welcome

Hope you question the doc's comment on staying on Entocort for life! This is a cortico steroid, a bit milder than Pred, but still a steroid, so I'm wary of that comment. And you're on both at the moment?
Time to seek a new doc and get a second opinion.
And re: the hair fall out, sometimes our immune system is so out of whack that this happens, it does with me when I have inflammation. During inflammation our bodies are working double time to fight the response first initiated by the body, then trying to combat it as well! My hair falls out in shedloads when this happens. And this is why we're fatigued too, cos of the energy stolen from other vital organs to fight the inflammation.
Try and relax about the hair situation, it will adjust its self eventually.
Good luck and
lotsa luv
Joan xxx

Hi Lola,

Welcome aboard, always remeber that these docs etc are there to do what you need them to do, so if that means a second opinion or answering a hunderd questions them keep asking them.

This isn't some old banger of a car at the bodyshop, this is your one and only body.

Lots of big hugs

Bruscar

I'm with Joan (as usual) - it seems odd to be on both Pred and Entocort.

Pred can make your hair fall out, as can vitamin deficiencies and iron deficiency. If you haven't had a full panel of bloods recently, you should do so.

IMO, you should get a second opinion....

- Amy

I was supposed to be weaned from the predisone when i started the entocort. But I didn't take it thinking I was supposed to stop the predisone before started the entocort.I flared up and started taking the predisone agian. Well now i've been on the entocort for about 5 weeks and am now weaning off the predisone. The plan was to wean me off the predisone while starting the entocort. i thought it was odd too that my doc had me taking both thats why i guess i misunderstood his directions. He said the reason i flared was because i wasn't taking the entocort while weaning from the predisone. HMM? So far i've had mild cramps nothing bad hoping it doesn't get worse as the days go by. Still waiting on the moon face to go away and i noticed a slight hump on the back of my neck i guess its buffalo neck from cushings. I go to my regular doctor and have blood work done about every two months. Just had it done a week ago and my thyroid levels were down and something about my protien but my sugar and everything else was good. My potassium was low though.