Here's my story. I am happy to be here, reading all the information and stories on here helps a lot. I am seventy years old. I have had crohns for about 40 years. Back then they didn't know what it was, so they gave me nerve pills, mostly Ativan. I took my self off of that after about 12 years. It was very hard to do. I did it very slowly and kept cutting the dosage back until I got off it. I have had a mild case over the years. I was able to do anything I wanted and raise a fine family. I was finally dx about 18 years ago. I started out on Pentasa which I did great on, but then the insurance wouldn't pay, so the dr. put me on Asacol. The asacol did Ok for a few years, but I got muscle pain with it, especially in the back of my neck. About 5 weeks ago I started a bad flare and the dr. put put me on Entocort EC, which I am scared to death of. I am also back on 1mg of Ativan to help me sleep at night. I wish I hadn't started the ativan back up. Age takes its toll on you. I have MVP, which makes my heart skip. Also the meds make my heart skip. I take a multi V., B-12, Floic Acid, 81mg asprin, 1mg Ativan, acid pill twice a day, and now started the Entcort. Is there any thing else I could take to help me. This disease is terrible. I pray a lot and pray for all of you. God Bless.
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Hello everyone
- Thread starter Lawrence
- Start date
hi Lawrence, and welcome to the forum 
what a rocky road you've been on, and for so long!
i can't advise on Entocort, as i have never been on this, nor Ativan (however i have taken diazepam and temazepam at various times and know just how quickly we can get addicted to these drugs). it takes real willpower to come down off them, and i think you did amazingly well to do that yourself.
you seem to be covering a lot of the supplements needed by most Crohn's sufferers - the B12 being one of the most important. are you taking the B12 orally? if so, it's possible you're still not at the required level, as poor absorption could well be a factor - you can get injections of B12, intra-muscular, (i have these) and they bypass the malabsorption issue.
apart from that, i can only suggest you look at your diet (if you haven't done so already) and see if there is anything there which seems to trigger the symptoms.. a lot of us have certain foods we need to avoid, and some of us have to resort to a low residue diet either temporarily during a flare, or long term to keep the pain at bay.
it's lovely to have you here, i'm sure you can share a wealth of experience with us - and i'm glad you found us
what a rocky road you've been on, and for so long!
i can't advise on Entocort, as i have never been on this, nor Ativan (however i have taken diazepam and temazepam at various times and know just how quickly we can get addicted to these drugs). it takes real willpower to come down off them, and i think you did amazingly well to do that yourself.
you seem to be covering a lot of the supplements needed by most Crohn's sufferers - the B12 being one of the most important. are you taking the B12 orally? if so, it's possible you're still not at the required level, as poor absorption could well be a factor - you can get injections of B12, intra-muscular, (i have these) and they bypass the malabsorption issue.
apart from that, i can only suggest you look at your diet (if you haven't done so already) and see if there is anything there which seems to trigger the symptoms.. a lot of us have certain foods we need to avoid, and some of us have to resort to a low residue diet either temporarily during a flare, or long term to keep the pain at bay.
it's lovely to have you here, i'm sure you can share a wealth of experience with us - and i'm glad you found us
Crohn's 35
Inactive Account
Hi Lawrence you made it here! Welcome! I too have had Crohns many years and have been on Entocort many times. It is not near as bad as Prednisone. The two things I can recommend it taking probiotics, and good Calcium and Vitamin D3, magnesium is good too, but get a citrate. It is a terrible disease but it is supposed to slow down the older we get.. cheers to that! Glad you found us, we are here to help and learn from you?
Any other family members with IBD?
Any other family members with IBD?
Hello Lawrence and welcome to the forum!
Forty years with Crohn's is quite some time..
You have done well and seem to be having a bit of a flare now.
I've been on Entocort and found it to be a great fast acting drug
with much less side effects than Prednisone.
You hang in there...good to have you on board!
Welcoming hugs~Nancy
Forty years with Crohn's is quite some time..
You have done well and seem to be having a bit of a flare now.
I've been on Entocort and found it to be a great fast acting drug
with much less side effects than Prednisone.
You hang in there...good to have you on board!
Welcoming hugs~Nancy
welcome to the forum Lawrence,
Sorry you are having a rough time, You have been through a lot for many years.
God bless you, glad you made friends here, Everyone here is great and very supportive..
Sorry you are having a rough time, You have been through a lot for many years.
God bless you, glad you made friends here, Everyone here is great and very supportive..
Lawrence, did you have a thread somewhere else. I could have sworn I replied to this!! Anyway, I just want to welcome you here. You'll certainly be a great asset to the forum with your experience. I hope you can get off the Ativan again soon. Good luck!!
Crohn's 35
Inactive Account
Yes he did! He snuck up behind us on another thread and got him to post his story here...Dont worry have your sanity still .:lol2:
Hiya Lawrence
I'm new to this as well. I see you live in Florida, I too have a lot of medication and believe me it is such a relief to have our NHS I do not know how all the people who have to pay for meds go on I just wouldn't have coped with the stress and as you know that is what us Crohnies don't need!! I'm pleased you have joined us and hope tomorrow brings a better day for us all. I too have raised a family and I would not have managed that without the help of my late mum GOD BLESS HER XXXX
Sue x :ghug:
I'm new to this as well. I see you live in Florida, I too have a lot of medication and believe me it is such a relief to have our NHS I do not know how all the people who have to pay for meds go on I just wouldn't have coped with the stress and as you know that is what us Crohnies don't need!! I'm pleased you have joined us and hope tomorrow brings a better day for us all. I too have raised a family and I would not have managed that without the help of my late mum GOD BLESS HER XXXX
Sue x :ghug:
welcome. thanks for sharing your story, i hope everything works out for you.
i also have MVP and suffer from heart skips, the interesting thing is that my cardiologist told me they were not related....i may have to look more into this...
are your skips under control? i found that magnesium supplements control mine very well, i went from 5-15 skips per day to maybe one a week now after the magnesium.
i also have MVP and suffer from heart skips, the interesting thing is that my cardiologist told me they were not related....i may have to look more into this...
are your skips under control? i found that magnesium supplements control mine very well, i went from 5-15 skips per day to maybe one a week now after the magnesium.
Regular Joe
Senior Member
Hi Lawrence.
Welcome. Some people I know, who have been on benzo's (ativan, valium) have found that melotonin works pretty well for sleep. I just ended a round of Entocort, and it is pretty mild, but it did help.
Welcome. Some people I know, who have been on benzo's (ativan, valium) have found that melotonin works pretty well for sleep. I just ended a round of Entocort, and it is pretty mild, but it did help.