Well, since the Entocort does not seem to be working for me @ all this flare (been taking 9mg since Sept. 25) my GI doctor has prescribed Lomotil and Asacol and wants me off the budesonide. she also wants to do another colonoscopy ASAP (october 29th)in the hospital and if she is unable to complete it (she could not complete it in Feb. due to looping) she is going to send me straight away for a CT scan of my abdomen, so we can "see what's going on in there". I have lost 10 lbs.( am now @ 108lbs.), tons of muscle and everything seems to be just going straight thru me. At least the prep is easy for me as I'm used to cleaning out my colon every single day!
Anyone currently taking Asacol with any success??? Immodium, even mega doses, did nothing for me, which is why she prescribed the Lomotil.
I am continuing to be vigilant about avoiding gluten, dairy, and have stopped eating chicken and beef after my MRT results were high yellow for these.
Update, Asacol/Lomotil??
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update asacol
Hey Cathy,
Is asacol mesalamine (which I think it is)?...then, I have been on it over a year since diagnosed.It's been great, stopped D immediately and gave me back my life until recently when I had a flare up and went on entecort...I am thinking on weaning off entecort since it didn't do anything to me and just staying on mesalamine.est,
Wishing you the best,
Monique
Is asacol mesalamine (which I think it is)?...then, I have been on it over a year since diagnosed.It's been great, stopped D immediately and gave me back my life until recently when I had a flare up and went on entecort...I am thinking on weaning off entecort since it didn't do anything to me and just staying on mesalamine.est,
Wishing you the best,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Re: update asacol
Hi Monique,wmonique2 wrote:Hey Cathy,
Is asacol mesalamine (which I think it is)?...then, I have been on it over a year since diagnosed.It's been great, stopped D immediately and gave me back my life until recently when I had a flare up and went on entecort...I am thinking on weaning off entecort since it didn't do anything to me and just staying on mesalamine.est,
Wishing you the best,
Monique
Yes, it is mesalamine...thanks for your feedback on it. I had just the opposite reaction...Entocort worked fabulously for me in february through June. I tapered down to 1 pill every 5-7 days, glutened myself unknowingly in September and have been flaring evr since. It just has not worked this second time, am losing weight (which I was not before) and everything is just going right through me. I am going to start it this weekend and stop the Entocort. I am concerned that the lomotil is considered an "opiate" and can be addictive, as I have that sort of personality so am going to just try the Asacol and see what happens. good luck to you too Monique.
Hi Cathy,
Are you still eating soy? Even a small amount of soy makes me very ill. As others have said, soy is evil!
I tried Asacol and other meds initially with no benefit. I also didn't think Endocort was working for me until I ate only plain, cooked foods for weeks (only almond flour/milk, rice/potatoes, a few cooked veggies/fruits, olive or coconut oil, and fish/shrimp) while taking 9 mg. of Endocort. Even two slices of tomatoes gave me 36 hours of D. Now, I am taking 3 mg. of Endocort every third day and am remarkably better. I've even been able to, occasionally, add in a few other foods now - like a small salad.
I hope you are feeling better soon!
Kathy
Are you still eating soy? Even a small amount of soy makes me very ill. As others have said, soy is evil!
I tried Asacol and other meds initially with no benefit. I also didn't think Endocort was working for me until I ate only plain, cooked foods for weeks (only almond flour/milk, rice/potatoes, a few cooked veggies/fruits, olive or coconut oil, and fish/shrimp) while taking 9 mg. of Endocort. Even two slices of tomatoes gave me 36 hours of D. Now, I am taking 3 mg. of Endocort every third day and am remarkably better. I've even been able to, occasionally, add in a few other foods now - like a small salad.
I hope you are feeling better soon!
Kathy
Cathy,
I hear ya. I weighed 110 lbs 3 weeks ago and I'm 5'3". Freaked out and put myself on Pepto....thank goodness it works so well for me but so does Imodium. I've now gained 2 lbs back in 3 weeks. But unfortunately have to get off the Pepto by mid-November.
Unfortunately Asacol made my D worse. Was only on it for 2 weeks but doctor wanted me to stop it and take Pepto. I don't know if it was the Lactose that was in it or what. I find myself shrugging my shoulders a lot lately.
I've heard some good things about Lomotil and its effectiveness but you can't take too too much of it. It'll let you know if you do...it has something in it that will make you very nauseous if you take too much of it....just its little warning that you need to taper off. Have you tried Pepto? Sorry the Entocort wasn't working. It's weird how we all have the same nasty disease but some meds that work great for some of us don't work at all in others. Just like our diets.
And, yes, the colon prep is a piece of cake to us who live on the toilet. People complain about it. Try living with what we live with!
Hoping your tests will give you answers. Glad you are having them done.
Terri
I hear ya. I weighed 110 lbs 3 weeks ago and I'm 5'3". Freaked out and put myself on Pepto....thank goodness it works so well for me but so does Imodium. I've now gained 2 lbs back in 3 weeks. But unfortunately have to get off the Pepto by mid-November.
Unfortunately Asacol made my D worse. Was only on it for 2 weeks but doctor wanted me to stop it and take Pepto. I don't know if it was the Lactose that was in it or what. I find myself shrugging my shoulders a lot lately.
I've heard some good things about Lomotil and its effectiveness but you can't take too too much of it. It'll let you know if you do...it has something in it that will make you very nauseous if you take too much of it....just its little warning that you need to taper off. Have you tried Pepto? Sorry the Entocort wasn't working. It's weird how we all have the same nasty disease but some meds that work great for some of us don't work at all in others. Just like our diets.
And, yes, the colon prep is a piece of cake to us who live on the toilet. People complain about it. Try living with what we live with!
Hoping your tests will give you answers. Glad you are having them done.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Kathy,
I'm thinking about giving up the soy. Honestly don't think I eat any of it. I have read recently that it's in the ingredient "Tocopherals". My rice chex has mixed Tocopherals in it? Is it probably soy derived? What ingredients should I look out for? I honestly don't know what soy is hidden in. I don't know if I react but may when I get off my Pepto. It was in my Vitamin D3 so switched to another without it just to be safe.
Thanks!
Terri
I'm thinking about giving up the soy. Honestly don't think I eat any of it. I have read recently that it's in the ingredient "Tocopherals". My rice chex has mixed Tocopherals in it? Is it probably soy derived? What ingredients should I look out for? I honestly don't know what soy is hidden in. I don't know if I react but may when I get off my Pepto. It was in my Vitamin D3 so switched to another without it just to be safe.
Thanks!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Terri,tlras wrote:Cathy,
I hear ya. I weighed 110 lbs 3 weeks ago and I'm 5'3". Freaked out and put myself on Pepto....thank goodness it works so well for me but so does Imodium. I've now gained 2 lbs back in 3 weeks. But unfortunately have to get off the Pepto by mid-November.
Unfortunately Asacol made my D worse. Was only on it for 2 weeks but doctor wanted me to stop it and take Pepto. I don't know if it was the Lactose that was in it or what. I find myself shrugging my shoulders a lot lately.
I've heard some good things about Lomotil and its effectiveness but you can't take too too much of it. It'll let you know if you do...it has something in it that will make you very nauseous if you take too much of it....just its little warning that you need to taper off. Have you tried Pepto? Sorry the Entocort wasn't working. It's weird how we all have the same nasty disease but some meds that work great for some of us don't work at all in others. Just like our diets.
And, yes, the colon prep is a piece of cake to us who live on the toilet. People complain about it. Try living with what we live with!
Hoping your tests will give you answers. Glad you are having them done.
Terri
I did read that about the Lomotil. Immodium and or Pepto do absolutely nothing for me. Not sure why. I am 5'6" and look healthy around 125lbs. My husband says I look like a skeleton and people are shocked when they see me, not a good thing! Thanks for your thoughts. Kathy, I don't eat soy and my diet is extremely restricted right now-I can't eat chicken or beef (based on MRT results) so have been eating a lot of plain turkey and fish. I was going to meet with a dietician but with all of these other appointments, med changes, and things going on, I didn't want to add a whole new diet into the mix.
Another update...
After taking 1 pill of Asacol and stopping the budesonide, I had a more formed BM this morning. Was definitely not fully formed but wow, if it has started working already, I am impressed. i know the Entocort took 1.5 weeks before I was having normans. no gurgling, pain, burning,after eating also.
