Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I'm still fighting against LC...
A new GI asked me to try MIKICORT (french equivalent of Budenofalk for you in the US) vs Entocort this time for 12 weeks at 9 mg then 8 weeks at 6 mg and 1 month at 3).
My question is simple : I've started it 8 days ago and I'm still having severe diarrhea in the morning. Could it be because it contains lactose vs Entocort ? My past experience with Entocort was better after a week at 9 mg. Should I keep on trying it or should I go back to Entocort ?
I'm GF and LactoseF - Had a gluten accident 3 weeks ago with a week of a big flare but then I was better and I've started the new treatment. Do you think the flare I have now is caused by this medication (lactose ?).
Thanks to your advices & especially Tex's, I'm waiting for my results from Enterolab to enhance my actual diet. They received it on Monday so I should receive it next week :)
Another problem I have not really "funny" is that all these intestinal issues caused me to have a rectal prolapse.
I will consult a specialized GI on Tuesday to see if I need to go on surgery for this. If one of you guys already experienced this, It will be very interesting for me that you share info. As a remember, I'm a 29 years old male & I don't really want to have surgery for this before treating completely mi gastrointestinal issues. My actual GI told me I should wait my 40-50's before doing these kind of surgery as far as I have to treat my diarrhea first (that's why she asked me to do a longer budesonide treatment that what I've done in the past). But I'm wondering if the sensation I have sometimes of not having a complete BM with big pains in the final colon is only caused by the LC (and the mix D/C) or because of this prolapse...
[For those who don't know what is a prolapse, it's part of the mucosa from the rectum that goes out when you have to push for a BM - then it goes back to normal. It is assimilated to Hemorroids but it's not!)
Hope you'll understand my english as far as I've written really fast !!
I'm sorry to hear that the Mikicort is not working. Virtually everyone who needs to take budesonide is lactose intolerant, because intestinal inflammation automatically causes lactose intolerance for at least as long as the gut is inflamed. Note that this is different from casein intolerance — casein intolerance is permanent. But because of the fact that intestinal inflammation causes lactose intolerance, I don't understand why any manufacturer of medications to treat such a medical condition would be naive enough to use lactose as an ingredient. But several of them do. Asacol for example also contains lactose. Evidently they don't understand inflammatory bowel disease at all.
So yes, in my opinion the lactose might be preventing the budesonide from helping.
I'm thinking that at least 1 or 2 members here have mentioned a rectal prolapse in the past, but unfortunately they haven't posted recently, and I don't remember who they are. The medical term for a feeling of incomplete evacuation is tenesmus (in English), and it is usually marked by pain. Tenesmus is somewhat common with inflammatory bowel disease (including MC and celiac disease), diverticular disease, pelvic floor dysfunction, and a few other conditions. We have several members with pelvic floor dysfunction issues (possibly associated with MC).
Your English is very good.
I hope that some of this is helpful,
Tex
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.
I don't generally talk about my rectal prolapse but I do have one. I have had it for about 15 years. About 5 years ago a surgeon wanted to operate on it; he forecast all kinds of horrible things happening to me if I didn't have the surgery. The kind of surgery necessary was going to be major abdominal surgery, not laparoscopic surgery, and that just felt like a bad idea. I worried that all my other intestinal and pelvic symptoms would somehow be effected and possibly get worse plus the surgery itself sounded like an ordeal. And then this surgeon was an arrogant patronizing person who didn't engender trust in me. I turned down the surgery. I had had the prolapse at that time for 10 years. It was not getting worse. Five years later I still have the prolapse. It has not gotten worse and isn't really a problem. I remain grateful that I did not put myself through the ordeal of surgery to satisfy the surgeon. All of the horrible things that were supposed to happen didn't.
@Tex : Is there any difference concerning the efficacity btw Budenofalk & Entocort ? What is strange is that Entocort is only prescribed for little to moderate Crohn when Budenofalk (Mikicort for me) is also prescribed for Collagenous colitis. Do you really think they have a different efficacity ? I've also seen that entocort is micronised budesonide which doesn't seem the case with Budenofalk. If you think (or other members) that there is nothing different in efficacity, I will continue the treatment switching with Entocort to avoid the lactose. I'm taking the Budenofalk 30min before each lunch. Can I do the same with Entocort ? In the past I was used to take the 3 pills in the morning. thx.
@Jean : Thank you so much for sharing your exp! I know it's not really easy to talk about this. I will see what will say the specialized GI surgeon on Tuesday and will keep you updated. My actual GI also told me it would be an abdominal surgery but as I said she thinks it's important to control my symptoms first and I'm sure that everything will go to normal in my bowels one day, it won't be an issue anymore.
As far as I am aware, the active ingredients in Budenofalk & Entocort are the same. The inactive ingredients are different. Generic budesonide is available, but again, the only difference between it and Entocort is the inactive ingredients. We have members all over the world, and they have reported similar results for all the various forms of budesonide sold in the various countries.
Sure, you can take Entocort at any time of day. Most people take it first thing in the morning because it can provide the equivalent of a cortisol boost, and if the level does not subside before bedtime, corticosteroids can interfere with sleep. For most of us, cortisol (produced naturally in the body) peaks in the mornings, and then slowly decays for the rest of the day. Because of that morning cortisol peak, taking a corticosteroid early enough to coincide with that peak can make the corticosteroid more effective. But I've never seen any definitive research that provides evidence whether the enhanced effect is large or small. It probably depends on our individual response to cortisol/corticisteroids. As long as taking it later in the day does not interfere with getting a good night's sleep, there's no major reason why you shouldn't do it that way.
Thanks, I hope your Sunday is enjoyable, too.
Tex
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.
Hi Max. While you are trying to heal, you may want to take ALL dairy and soy out of your diet… along with fiber ( any RAW fruits, salad, veggies..etc). This will help speed your recovery. Down the road, when you are better, you can test these foods back in one at a time. The sacrifice now is worth the reward!
Fecal Anti-gliadin IgA 11 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 4 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 8 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 2 Units (Normal Range is less than 10 Units)
Gluten & Soy seem to be problematic even if they are quite low. I never stopped casein products ans results are very low so I'll be carefull but won't totaly stop. Can I still eat eggs sometimes ? Is it better to eat the white or yellow part ?
Those are results that most of us would love to have, and Leah is probably correct. Approximately 1 in 300 of us have selective IgA deficiency though, and if we happen to produce immunoglobulin A, but not enough to be in the normal range, any IgA-based ELISA test can yield false negative results. Since you have so many negative results, that's a possibility. If I were in your situation, the next time I visited my doctor I would ask for a simple blood test to rule out selective IgA deficiency. IOW the test will simply verify that your immune system is capable of producing normal amounts of immunoglobulin A. If it is, then those results should be valid.
One reason why I bring this up is because people who have selective IgA deficiency tend to often have somewhat different symptoms or complicating issues because their immune system just doesn't work normally.
Do you mind if I add your test results to our list here?
Tex
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.
Yes Max, I thought of the IgA deficiency thing also ( when I read your results) because I am one of those people who has IgA deficiency, so my Enterolab results were not accurate… but I have to say, my numbers were ALL below 4 I believe. It seems that histamines are more of an issue with me ( although diet change was needed to heal my gut to start with). One good thing about having IgA deficiency is that I don't react strongly to small amounts of any food ( because I'm not producing the inflammatory antibodies). I can "cheat" in small amounts with dairy and soy and not react, but I am choosing to mostly stay away from gluten, dairy, and soy simply because it is easier on my system and that diet is what helped heal me.
It's a simple blood test to find out, so it may be a good idea to have it done so you know for sure. One thing people like me have to be careful with is LIVE VACCINES. I was told by my immunologist not to get them because I could actually contract the disease I'm trying to avoid! No shingles vaccine for me :( As for my immune system not working properly….so far, my other antibodies must be picking up the slack, because i rarely get sick :)
I will soon do a test to check if I'm not igA deficient - I have the prescription from my Doc. It will help me to know if Enterolab results were ok as far as they are really good.
@Tex : I think it's better to wait for this check before you put my results online, but of course I agree to do it after.
I'm also posting today because I'm totally confused and...happy (never say it too loud ;o)).
As you know, I was complaining still having issues even using entocort 9mg (as a remember, It's the 4th time I'm doing this treatment, & my GI asked me to take it for 3 months @9mg this time then 2 months 6 mg etc...). It's been 5 weeks I've started the treatment and my symptoms are better but not optimal until...4 days ago. I noticed that even with entocort I still had fatty/yellow stool, still tired etc... I was so bored that I was wondering if I could have any issues with digesting fat/lipids. I tried to take Digest gold supplements but things got worse. I was aware about Pancreatic issues and as far as Créon Forte medication is avilable without prescription in France, I wanted to test it. I've done it "as a test" without any expectations from it, as it is said that 90% of the time, pancreatic issues touch only alcoolic people.
24 hours later until today : amazing ! One to 3 normal stool a day. Like in the old times ! This is really odd to me. I think both Creon & Entocort have a very good effect on my small intestine.
I really wanted to share with you about this. Maybe my MC inflammation was already gone (explaining my enterolab results) but the problem was elsewhere (pancreas) ?
My actual medications/supplement/diet if it can help:
Vitamin D (Bio D-Muslion 400UI per drop) : 12 drops a day (my last D level was 32ng/L)
Entocort 9mg : started 5 weeks ago - Already done this treatment 3 times since October 2013
Vitamin B (Bio B-Complex) : 1 pill/day
Gluten-free : since a year and a half with couple of accidents
Soy/eggs "carefull" : since 2 months
Creon forte 25 000 U : one or 2 pills during my dinner, 1 in the morning or at lunch - since 4 days
Massimo, so sorry that you have to figure this out on your own! Doctors don't seem to put the pieces together very well.
I am just returning from visiting my 94 year old father in law who has had severe diarrhea for 6 months. He often (5 - 6 times/day) can't make it to the bathroom on time and this has severely limited his otherwise active social life. His frail health means he's not a good candidate for colonoscopy/biopsy. And he lives in a residential care facility where he has limited say on his own diet. His doctor started him on pancreas medicine (not sure of the brand, but 40mg. with each meal). It took about a week, but he seems to be much improved. We are all astonished.
So, Tex, what is the role of the pancreas in all this?
Chris
I will soon do a test to check if I'm not igA deficient - I have the prescription from my Doc. It will help me to know if Enterolab results were ok as far as they are really good.
@Tex : I think it's better to wait for this check before you put my results online, but of course I agree to do it after.
I'm also posting today because I'm totally confused and...happy (never say it too loud ;o)).
As you know, I was complaining still having issues even using entocort 9mg (as a remember, It's the 4th time I'm doing this treatment, & my GI asked me to take it for 3 months @9mg this time then 2 months 6 mg etc...). It's been 5 weeks I've started the treatment and my symptoms are better but not optimal until...4 days ago. I noticed that even with entocort I still had fatty/yellow stool, still tired etc... I was so bored that I was wondering if I could have any issues with digesting fat/lipids. I tried to take Digest gold supplements but things got worse. I was aware about Pancreatic issues and as far as Créon Forte medication is avilable without prescription in France, I wanted to test it. I've done it "as a test" without any expectations from it, as it is said that 90% of the time, pancreatic issues touch only alcoolic people.
24 hours later until today : amazing ! One to 3 normal stool a day. Like in the old times ! This is really odd to me. I think both Creon & Entocort have a very good effect on my small intestine.
I really wanted to share with you about this. Maybe my MC inflammation was already gone (explaining my enterolab results) but the problem was elsewhere (pancreas) ?
My actual medications/supplement/diet if it can help:
Vitamin D (Bio D-Muslion 400UI per drop) : 12 drops a day (my last D level was 32ng/L)
Entocort 9mg : started 5 weeks ago - Already done this treatment 3 times since October 2013
Vitamin B (Bio B-Complex) : 1 pill/day
Gluten-free : since a year and a half with couple of accidents
Soy/eggs "carefull" : since 2 months
Creon forte 25 000 U : one or 2 pills during my dinner, 1 in the morning or at lunch - since 4 days
I will update you about this in a week or sooner.
Have a great friday
If you respond well to Créon Forte (which contains pancreas enzymes), and if you had fatty & yellow D, you may have an inflamed pancreas.
You don't have to be an alcoholic if you have an inflamed pancreas, j'èspere
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Chris wrote:So, Tex, what is the role of the pancreas in all this?
Here's how fat is handled by the digestive system:
Fat doesn't readily mix with water, so Bile is used to emulsify fat. This involves breaking it into tiny, relatively uniform globules. Then lipase enzyme from the pancreas is used to break down (digest) those fat globules. Emulsifying the fat expedites digestion, by providing more surface area so that the lipase has easier access to the fat.
But in the end, it's the lipase that digests fat, and if lipase is in short supply, or the emulsification process is compromised, or motility does not allow sufficient time for the process to complete, then too much fat may remain undigested. Since fat is a lubricant, the result is D.
Many of us apparently have an inflamed pancreas when the rest of our digestive system is inflamed with MC, and this interferes with lipase production, and therefore fat digestion. In fact, the production of many different enzymes all up and down the digestive system is compromised when MC is active. That's why we're unable to properly digest food during a flare. Normally, as the inflammation in our intestines is resolved, the inflammation in the pancreas also fades away.
Tex
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.
Wow, I've had some of that yellow fatty substance as a teen, and D has come and gone ever since whenever I ate stuff with too much fat in it, like gravies, fried items, not lean burger...etc. Never put two an two together until now...
is that all these intestinal issues caused me to have a rectal prolapse. 
Evidently they don't understand inflammatory bowel disease at all.
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