Hello all! I had my second follow up GI appt this morning. I was diagnosed with LC early May of this year and started on Budesonide. My Dr does a very long taper over 9 months which is fine. I'm going down another step this weekend. This has never been a wonder drug for me. I think it has helped some but I've also gone gf/df/ef and working on soy (this one seems hardest??). I started the diet changes 3 1/2 months ago. Well, my Dr. seemed very surprised that I am not 100% better and told me that 80% of her patients with MC are dramatically improved within a week on Budesonide. When asked about relapse, she admitted many do relapse but they can almost always trace it to a medicine that re-triggered it. She has never recommended diet changes but then today said that diet is responsible for the "urgency" part only. She seemed to be all over the board and started throwing out all these ideas like-take me off budesonide and put me on lialda. I said no. Then she threw out amitriptyline or desipramine at a low dose. Didn't feel great about that. I brought up Questran and said I had a friend with 30 unused packets. She said go ahead and try it and if I like it, they will call me in a script. Frankly, it seemed like she would give me anything I wanted. She just seemed to go into a tailspin that I wasn't perfect and kind of made me feel like an outlier.
I'm not a medicine person so I think I just need to give this more time. I am better most days than I was 4 months ago-is it diet or meds?-don't know. I still go 3-4 times a day or so which is way down-I'd say a 5 on the Bristol scale and sometimes a 6 still-rarely a 7 anymore. I'm following all the bile acid threads closely. Interesting stuff.
I mentioned my pcp was doing vit D, follow up thyroid (I'm on armour) and cholesterol end of Oct and she mentioned she wanted to get a CBC and liver/kidney panel to check on Budesonide effects and that my stools have been loose all year. Seemed like an afterthought and I agreed to it since I met my deductible for the year and it can't hurt to have the results. I do supplement with Vit d3, b12, b6, fish oil, tumeric and mag glycinate-all free of all bad additives.
It was just a strange visit-told her I needed more time to research and I had pretty good control now. I use 1/2 immodium if we travel or go out to eat with others-that works for me for 5 hrs or so and a whole pill lasts me almost the day so that is a nice safeguard.
The appt ended with her saying to come back in 3 months to follow up, if I needed meds to call and they would do that for me, then she said if I felt pretty good in Dec, I didn't have to come in and just call as needed. Thank GOD for this support group-as so many have said-you are on your own. I guess it's good my Dr is open to meds if needed. She was also right on with the diagnosis the first time I came in but as has been said-treatment is a whole other thing and I saw that today. I think she just wants me to be as good as I can be so she's throwing out meds. So sad no diet recommendations-she said people tend to not follow them anyway.
No real questions for the group at this point but just thought others might find the visit interesting in case you run into something similar. I love reading on others follow up GI appointments. Hopefully bloodwork is ok from today and I continue with diet and my taper. I may or may not try the sequestrants-I did get them from my friend today-she goes to the same practice/different doc for something other than MC.
Keep your chin up everyone-we all have our days. I had a few this week myself.
Taia
Follow up GI visit-weird
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Taia,
My follow up was very similar to yours although I saw my GI doctor's PA and not him. She wanted me off the budesonide as quickly as possible and I had to do some heavy talking to allow her to let me taper off as I saw fit and as my body sees fit. I felt like she just wanted me to stop and be done.
Mine made the very same comment about diet. I asked why diet was NEVER mentioned to me to which she hum hawed around and said, "Well, no one wants to follow a diet anyway." I said, "Well, I'm not no one and I don't happen to like to be sick. I will do whatever it takes to get better and get my old self back." To which she said, "You've done very well."
That was pretty much the end of the appt. They just don't like to talk diet. It's very frustrating. Thank goodness for this forum and all of my research and reading and knowledge. I think the bottom line was I really knew more about MC than she did and she wasn't about to admit it.
My follow up was very similar to yours although I saw my GI doctor's PA and not him. She wanted me off the budesonide as quickly as possible and I had to do some heavy talking to allow her to let me taper off as I saw fit and as my body sees fit. I felt like she just wanted me to stop and be done.
Mine made the very same comment about diet. I asked why diet was NEVER mentioned to me to which she hum hawed around and said, "Well, no one wants to follow a diet anyway." I said, "Well, I'm not no one and I don't happen to like to be sick. I will do whatever it takes to get better and get my old self back." To which she said, "You've done very well."
That was pretty much the end of the appt. They just don't like to talk diet. It's very frustrating. Thank goodness for this forum and all of my research and reading and knowledge. I think the bottom line was I really knew more about MC than she did and she wasn't about to admit it.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Taia,
Your doc does appear to be open-minded, and that's certainly a good thing. And her recommendation for a very long taper shows that she understands the use of budesonide to treat MC far, far better than at least 95 % of her colleagues. My take on her willingness to go along with any med you might choose to try suggests that she wants to learn as much as she can about treating the disease. But it could also mean that, as you suggested, she might have been somewhat rattled, because most patients probably just sit there and nod in agreement to whatever she says (because they know nothing about the disease, other than what their doctors tell them).
And sadly, I believe her comment about people not following diet recommendations to treat the disease are right on target. Most people who go to see a doctor want a "real" treatment — a pill to cure their ills. They consider diets to be fads for losing weight, and not a suitable treatment for a serious disease.
Likewise for your PA, Jari. Doctors don't take diet changes seriously because most of their patients won't follow them closely enough for the diet to work, anyway. So doctors typically don't bother to waste any of their precious time learning about the rather complex diet changes necessary to treat MC by diet. Just look at the proliferation of drug ads for immune system suppressants on TV these days. Most people just want to pop a pill, and get on with their life, no matter how Draconian the side effect risks might be. They want fast relief today, and they'll worry about what the side effects might do to their longevity prospects later (when it's too late).
I truly believe that we are a rather atypical group in today's world. We are a group of people who are unique in that we recognize that treating the symptoms doesn't actually work for this disease, and we are adequately self-disciplined to do what we believe is necessary in order to get our health back.
Just look at what we advocate here — a seriously restricted diet, hours of studying to learn what to look for on labels, and enough detective work to make Columbo envious. And then we point out that it usually takes months to see any significant improvement, and it can take years of difficult, dedicated effort to completely heal our gut. Say what? Most MC patients who come across this site probably read a few posts, wrinkle their brow in disbelief, and conclude that we're all idiots who love to deprive and punish ourselves.
And as they move on to one of the discussion boards where no one ever sees any real improvement over the long term, they realize how lucky they are that their doctor is willing to offer them a "real" treatment. 
Please don't misunderstand me, I'm not condemning the use of medications to treat this disease. I'm just saying that drugs are not enough, because if we don't change our diet, either with or without the meds, the inflammation will never stop, and additional AI diseases will continue to creep into our life. And who among us can afford any more AI diseases? As far as I'm concerned, all of us have too many already.
Tex
Your doc does appear to be open-minded, and that's certainly a good thing. And her recommendation for a very long taper shows that she understands the use of budesonide to treat MC far, far better than at least 95 % of her colleagues. My take on her willingness to go along with any med you might choose to try suggests that she wants to learn as much as she can about treating the disease. But it could also mean that, as you suggested, she might have been somewhat rattled, because most patients probably just sit there and nod in agreement to whatever she says (because they know nothing about the disease, other than what their doctors tell them).
And sadly, I believe her comment about people not following diet recommendations to treat the disease are right on target. Most people who go to see a doctor want a "real" treatment — a pill to cure their ills. They consider diets to be fads for losing weight, and not a suitable treatment for a serious disease.
Likewise for your PA, Jari. Doctors don't take diet changes seriously because most of their patients won't follow them closely enough for the diet to work, anyway. So doctors typically don't bother to waste any of their precious time learning about the rather complex diet changes necessary to treat MC by diet. Just look at the proliferation of drug ads for immune system suppressants on TV these days. Most people just want to pop a pill, and get on with their life, no matter how Draconian the side effect risks might be. They want fast relief today, and they'll worry about what the side effects might do to their longevity prospects later (when it's too late).
I truly believe that we are a rather atypical group in today's world. We are a group of people who are unique in that we recognize that treating the symptoms doesn't actually work for this disease, and we are adequately self-disciplined to do what we believe is necessary in order to get our health back.
Just look at what we advocate here — a seriously restricted diet, hours of studying to learn what to look for on labels, and enough detective work to make Columbo envious. And then we point out that it usually takes months to see any significant improvement, and it can take years of difficult, dedicated effort to completely heal our gut. Say what? Most MC patients who come across this site probably read a few posts, wrinkle their brow in disbelief, and conclude that we're all idiots who love to deprive and punish ourselves.
And as they move on to one of the discussion boards where no one ever sees any real improvement over the long term, they realize how lucky they are that their doctor is willing to offer them a "real" treatment. Please don't misunderstand me, I'm not condemning the use of medications to treat this disease. I'm just saying that drugs are not enough, because if we don't change our diet, either with or without the meds, the inflammation will never stop, and additional AI diseases will continue to creep into our life. And who among us can afford any more AI diseases? As far as I'm concerned, all of us have too many already.
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.
At my last GI appointment, I asked why she didn't recommend diet changes and she said basically the same thing. Nobody wants to follow them so she doesn't bother anymore.
She used to employ a nutritionist to make meal plans for people with Crohn's etc. immediately after diagnosis. This service was an extra fee that some insurances didn't cover. Well guess who sat there with no appointments? Apparently people don't want to change their diet and they especially don't want to pay to hear about it.
Apparently we're not normal.
She used to employ a nutritionist to make meal plans for people with Crohn's etc. immediately after diagnosis. This service was an extra fee that some insurances didn't cover. Well guess who sat there with no appointments? Apparently people don't want to change their diet and they especially don't want to pay to hear about it.
Apparently we're not normal.
Tex
Fantastic post you hit the nail on the head again (like always)
I just want to share this with you and every one .
When I recd my phone call last fall confirming MC all I was told I had MC and A prescription called in and if I had any problems call.
Well I felt lost and alone in the dark I did know that foods was making me sick but didn't know how to go about treating myself.
After A week of misery and being scared I decided to try the internet for info and I found this group I read your post HOW MC WILL AFFECT MY LIFE. I had tears just reading your post and realized I found my help.
I hit A bump in the road from time to time but I just pick myself up and move foreword.
Thanks for being here for everybody
Terry
Fantastic post you hit the nail on the head again (like always)
I just want to share this with you and every one .
When I recd my phone call last fall confirming MC all I was told I had MC and A prescription called in and if I had any problems call.
Well I felt lost and alone in the dark I did know that foods was making me sick but didn't know how to go about treating myself.
After A week of misery and being scared I decided to try the internet for info and I found this group I read your post HOW MC WILL AFFECT MY LIFE. I had tears just reading your post and realized I found my help.
I hit A bump in the road from time to time but I just pick myself up and move foreword.
Thanks for being here for everybody
Terry
The Dr visit couldn't ring more true for me too.
My Dr. was so willing to get ALL the tests and was even ok explaining some of the rotation aspects of the foods. His comment that I remember him saying 4 months ago was "my you react to quite a few foods on this 190 food panel(blood drawn), it will be a bit difficult putting meals together but not impossible"
Well cripe....that is when I had found this forum, and put in my plea for Help that I was not going to get from a Dr. 
What my Dr. didn't get a chance to sway me on was the Enterolab testing (he wanted me to initially get the testing done thru Genova). I basically stopped going to see him, did the Enterolab test, emailed him the results and let him know that I appreciated his services and if I had anymore issues I'd be sure to schedule an appt. with him. Sometimes a person just knows what they want, and I feel a Dr. should indulge that person before writing their idea off.
DIET has been as close to number 1 in helping me heal as ever, number 2 has been omitting hormone supplementation (I wish warm flushes weren't a part of being 48 but it is what it is at this stage in life, guess I learn to live with it and try not to become an Angry Monster from it - please someone make a Snickers that is safe for me
)
Yes hang in there everyone....I love this forum that feels more like family than my own sometimes
Erica
My Dr. was so willing to get ALL the tests and was even ok explaining some of the rotation aspects of the foods. His comment that I remember him saying 4 months ago was "my you react to quite a few foods on this 190 food panel(blood drawn), it will be a bit difficult putting meals together but not impossible"
Well cripe....that is when I had found this forum, and put in my plea for Help that I was not going to get from a Dr. What my Dr. didn't get a chance to sway me on was the Enterolab testing (he wanted me to initially get the testing done thru Genova). I basically stopped going to see him, did the Enterolab test, emailed him the results and let him know that I appreciated his services and if I had anymore issues I'd be sure to schedule an appt. with him. Sometimes a person just knows what they want, and I feel a Dr. should indulge that person before writing their idea off.
DIET has been as close to number 1 in helping me heal as ever, number 2 has been omitting hormone supplementation (I wish warm flushes weren't a part of being 48 but it is what it is at this stage in life, guess I learn to live with it and try not to become an Angry Monster from it - please someone make a Snickers that is safe for me
)Yes hang in there everyone....I love this forum that feels more like family than my own sometimes
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
That's one of the few things that I miss, too. Over the years, I ate a many a Snickers bar when I was working hard and needed a quick energy recharge.Erica wrote:please someone make a Snickers that is safe for me
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.