Update, Asacol/Lomotil??

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CathyMe.
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Post by CathyMe. »

Same somewhat formed BM this morning and then went to D but that @ least is progress. Terri,
my plan is to not take the Lomotil unless my symptoms became intolerable. I have a major headache, which I'm thinking maybe due to stopping the Entocort but I can deal with that.
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Post by tlras »

Sounds like a great plan to me! I think Pepto gave me a headache for a few days but, hey, that's better than the D I was having. Sending good vibes your way!

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Mim18
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Post by Mim18 »

I really did try to give Asacol a fair trial, but within a week I was worse than I had ever been over the past 8 or 9 years. Now it all makes sense. LACTOSE! Thanks for enlightening me!
Anyway, due to the bad results, I just stopped taking the Asacol. In just a week I have gone from 8-9 episodes to 3-4 per day. That is something, even though they are still watery. I just feel as if I don't digest anything properly. I still get too many episodes of abdominal pain within 2 hours of eating. I record everything that I do eat, hoping that I can figure out what is causing my problems. Yes, I've also lost weight, about 16 pounds in the last 6 months. I finally started buying some new clothes that fit.
I haven't posted much lately as I just feel like a failure. I failed Entocort and I failed Asacol.
Just hoping that eventually the diet changes will kick in and bring about some healing.
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tex
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Post by tex »

Marion wrote:I haven't posted much lately as I just feel like a failure. I failed Entocort and I failed Asacol.
Just hoping that eventually the diet changes will kick in and bring about some healing.
Please don't associate your experiences with failure. How can you view that accomplishment as a failure, when you've managed to cut your bathroom trips down to a third of what they were by discontinuing a treatment that didn't work? You haven't failed in anything — you've managed to prove that two of the conventional treatment methods don't work for you. Look at it the way that Thomas Edison would have. Two quotes often attributed to him are:
I am not discouraged, because every wrong attempt discarded is another step forward.

I have not failed. I've just found 10,000 ways that won't work.
The key to fine tuning our individual treatment program seems to be to rule out the treatment options that don't work, so that we can finally settle on a routine that does work, and that's exactly what you're doing. You'll get there.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Leah »

keeping my fingers crossed :)

Leah
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Post by brandy »

Hi Marie,

Things took a long time for me, don't get discouraged. Nothing was fast in my healing process. I found it helpful to evaluate progress in 8 week blocks of time. If it looked at my progress in a 3 or 4 day period it seemed hopeless. If I looked over an 8 week window, yes I was generally better than 8 weeks prior. A lot of people seem to heal fast on this forum but it was not my situation.

Brandy
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Mim18
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Post by Mim18 »

Hi Tex,

Thanks for the encouraging words. I needed to hear them. They have put a whole new perspective on the way I am viewing this disease.You are right! I need to say good by to the therapies that did not work and move on. I was being far too negative, and feeling like a failure. Now I am seeing things in a new light! It is very positive to know what does not work, and move on from there.

Thank you again, and I will continue trying to fine tune the diet.

Marion
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Post by fatbuster205 »

I was taken off Asacol about 10 days ago and the last 5 days have had 1 as in singular bm a day Bristol Score Chart type 3! I am still on budesonide 9mg! I have never been that convinced about Asacol personally and I have been on high dosage for months. The consultant said it can cause D! Certainly dramatic difference for me - my GP who I saw this morning was really shocked when I showed him the charts I have been keeping (for those that don't know I have been recording every BM in a spreadsheet with the type recorded using the above.) He told me to keep logging as it is really proving useful for them because they can see immediately what is going on!

I am interested to see the comments above re the dairy element in Asacol! After I have had my OGD endoscopy on 21 Nov and go GF at last I will be interested to see down the road whether dairy is an issue - I have had suspicions in the past for different reasons!

Anyway, Cathy, I hope things improve soon for you and Christine, it is good to know that someone else also doesn't respond well to asacol!
Anne
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tex
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Post by tex »

Anne,

Even without the dairy issue, Asacol (mesalamine) causes inflammation and D for many people because it is a derivative of salicylic acid, which means it is actually an NSAID, and it shows the same adverse inflammatory effects as conventional NSAIDs.
Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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wmonique2
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update asacol

Post by wmonique2 »

Tex,



Mesalamine like NSAIDS?

Wow, I've been on it for more than a year, more like 16 months...


Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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tex
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Post by tex »

Monique,

NSAIDs don't cause everyone to react. The chemical name of mesalamine is 5-aminosalicylic acid.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Leah »

Hi Anne. If you suspect you are reacting to dairy, you probably are. You really should think about taking it out of your diet while you are trying to heal on Entocort. You can always test it down the road when you are either on a very low dose or off it completely..... otherwise, you may be putting off healing and could relapse when you try to get off the steroid. Just a suggestion.

Leah
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Christine.
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Post by Christine. »

I don't know if I reacted to the dairy or the NSAID element in Asacol...I don't know if I even had a reaction. I only know that 8 weeks on a high dose did not alleviate symptoms. Those were the days when I had to get up VERY early every morning for the first potty trip of the day! It was not until I went gluten and dairy free that I had any relief at all. Quitting Egg and soy took me over the hump towards remission.
Christine
CathyMe.
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Update...

Post by CathyMe. »

Almost 2 weeks since starting Liadal and had a completely formed BM w/no D this morning!! Yipee! I have been digilent with diet of course and feel like the Entorcort is finally all out of my system so it's definitely the new meds. I'm feeling stronger too in my workouts and just better overall. I have my colonoscopy scheduled for Monday and will update with results from that.
tlras
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Post by tlras »

What is Liadel? Is it lactose free? Just curious. Glad something is working for you.....great news!

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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