I worked things through with my GI's office and they didn't leave me hanging. We went through a handful of meds I've already tried and don't plan on trying again. Next on their list is Lomotil since I've never tried it before. I've been taking it since Tuesday and am feeling like I should stop. I am supposed to increase the dose since it isn't working but I am afraid to do so since this whole week I have been in a daze. Not good when I run around on a fork lift all day and operate other equipment. I don't understand why anyone would want to feel this way- the buzzed feeling to me is not pleasant at all and I am only taking two pills a day.
It has slowed things down but it is still all WD. I go back to wondering if I'm not giving it enough time but I feel worse than before in many different ways. I had to stop taking my LDN (pain management) and seem to have increasing muscle pains. I haven't decided if that is just in my head or not. Even if it did work, given the side effects, it wouldn't be a long-term solution.
It may be slowing things down a bit but knowing it is only treating the symptom (and not very well) doesn't make me feel comfortable taking it.
The nurse said my doc wanted me to try this first before resorting back to the doxycycline. I'm not really thrilled about that idea either........the D will return when I stop and it caused a yeast infection last time.
I'm wondering if this is the last stop in their bag of tricks.
Lomotil- absolutely not the answer
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lomotil- absolutely not the answer
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb,
Lomotil is an antidiarrheal. IOW it works by slowing down intestinal motility. I assume your doctor told you that it contains a small amount of atropine (an anticholinergic). The atropine is in there to prevent people from taking an overdose. It will cause tachycardia if you take too much.
Since it may also cause drowsiness or dizziness, Lomotil has a label warning against being used by motorists, operators of hazardous machinery, etc.
Tex
Lomotil is an antidiarrheal. IOW it works by slowing down intestinal motility. I assume your doctor told you that it contains a small amount of atropine (an anticholinergic). The atropine is in there to prevent people from taking an overdose. It will cause tachycardia if you take too much.
Since it may also cause drowsiness or dizziness, Lomotil has a label warning against being used by motorists, operators of hazardous machinery, etc.
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 read all the warnings and was wondering how it may affect me since I always seem to be sensitive to medications. There is no way I can increase it and work. I’ve been struggling to stay awake after dinner. Not that I haven’t had fatigue issues before but this feels like I’ve drank a bottle of wine.
I sure wasn’t expecting this but at least I have a good idea that the LDN is somewhat helpful. I was debating on that. Again, it can always be worse.
I sure wasn’t expecting this but at least I have a good idea that the LDN is somewhat helpful. I was debating on that. Again, it can always be worse.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I went with my son to his GI appointment (follow up on crohns, UC, and AIH) and the RN ended up talking to me about what's goign on. I wasn't going to bring anything up because I didn't want to intrude on my son's appointment. It was nice that she recognized me and I am on her mind. She agreed that I should stop the lomotil and not increase it if I am having such bad side effects and the D hasn't changed anything. I still have to wait until next week since my GI is out of the country. She said she came across some newer studies indicating that biologics can be helpful for my situation. This is exacyly what I don't want to do but who knows at this point. She said she needed to wait until my GI returns Because she doesn't know if he will approve. She also said he may decide to send me to UW Health in Madison to have another doc do a review. I'm not sure about this approach either..... Do they have secret medications there? Been a bit edgey lately.....
I did take my LDN last night and the pain seems somewhat better today. Hopefully I will continue to notice improvements. I have a carpel tunnel flare right now that is horrible. My trapezius muscles in my neck have also flared. Crazy. I have always related the neck/shoulder pain to my thyroid. It's hard to be patient when you feel like you're falling apart.
It's frustrating to see others make improvements through diet management. I keep hoping it is something I am eating and wonder what I'm doing wrong. Are there many others out there who just can't get it under control no matter what they try?
It saddens me to be stuck at home. My husband just took a three hour trip to attend a funeral and I did not go with. He is also going to Florida for Thanksgiving to visit his sisters and I have opted to stay home. He has been so understanding and supportive but it makes me feel like I'm not trying hard enough. Anyone who says MC is a disease of inconvenience can stop by and have a chat with me for some enlightenment.
I am happy to read success stories here. It does give me that little push to keep moving forward even if it is at a limp.
I did take my LDN last night and the pain seems somewhat better today. Hopefully I will continue to notice improvements. I have a carpel tunnel flare right now that is horrible. My trapezius muscles in my neck have also flared. Crazy. I have always related the neck/shoulder pain to my thyroid. It's hard to be patient when you feel like you're falling apart.
It's frustrating to see others make improvements through diet management. I keep hoping it is something I am eating and wonder what I'm doing wrong. Are there many others out there who just can't get it under control no matter what they try?
It saddens me to be stuck at home. My husband just took a three hour trip to attend a funeral and I did not go with. He is also going to Florida for Thanksgiving to visit his sisters and I have opted to stay home. He has been so understanding and supportive but it makes me feel like I'm not trying hard enough. Anyone who says MC is a disease of inconvenience can stop by and have a chat with me for some enlightenment.
I am happy to read success stories here. It does give me that little push to keep moving forward even if it is at a limp.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Deb,
You bring up an interesting point — the percentage of members who are unable to ever get to remission, despite trying every known treatment option. They're usually unable to tell if they're a mile away from remission, or an inch. I'm not sure of the exact number, but I'm pretty sure it's less than 5 %. Of course that's 5 % too many, but compared with non-members, that's quite low.
I've spent many hours wondering what we have been overlooking. What on earth should we be trying, that we haven't tried before Somewhere, there's a solution that should work for every case. It probably isn't the same solution in every case, but a group of additional options, and each one has a patient's name on it. We keep trying to fine tune our treatments, and that's logical once we find a treatment that works, but in the tough cases, I keep thinking that maybe there's a radically different approach that we've been overlooking. But what in the world could it be?
Tex
You bring up an interesting point — the percentage of members who are unable to ever get to remission, despite trying every known treatment option. They're usually unable to tell if they're a mile away from remission, or an inch. I'm not sure of the exact number, but I'm pretty sure it's less than 5 %. Of course that's 5 % too many, but compared with non-members, that's quite low.
I've spent many hours wondering what we have been overlooking. What on earth should we be trying, that we haven't tried before Somewhere, there's a solution that should work for every case. It probably isn't the same solution in every case, but a group of additional options, and each one has a patient's name on it. We keep trying to fine tune our treatments, and that's logical once we find a treatment that works, but in the tough cases, I keep thinking that maybe there's a radically different approach that we've been overlooking. But what in the world could it be?
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Deb
as we have discussed in the past 6 months or so of your journey, my thoughts are - it is not food based triggers causing your issues, I think the combo of work and life (life being family, children, other activities, mental processes etc) are putting the layers of strain on your body that keeps your body in an inflammed state.
there is a really finite delicate sweet spot - where you are doing what you can, enjoying life without overthinking and overdoing things. Acceptance of what is and what ever limitations that entails, balanced with being proactive and sticking to the eating and lifestyle plan.
It has taken me 6-7 years to find that finite spot. Things are not perfect but they are liveable, and I have a good level of acceptance.
Sorry I dont have any fruitful suggestions that could improve things for you
there are small number that do not achieve 'remission' despite years of 'trying everything'It's frustrating to see others make improvements through diet management. I keep hoping it is something I am eating and wonder what I'm doing wrong. Are there many others out there who just can't get it under control no matter what they try?
as we have discussed in the past 6 months or so of your journey, my thoughts are - it is not food based triggers causing your issues, I think the combo of work and life (life being family, children, other activities, mental processes etc) are putting the layers of strain on your body that keeps your body in an inflammed state.
there is a really finite delicate sweet spot - where you are doing what you can, enjoying life without overthinking and overdoing things. Acceptance of what is and what ever limitations that entails, balanced with being proactive and sticking to the eating and lifestyle plan.
It has taken me 6-7 years to find that finite spot. Things are not perfect but they are liveable, and I have a good level of acceptance.
Sorry I dont have any fruitful suggestions that could improve things for you
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Donna for the suggestion. The biggest question I have about the biologics is if I should even consider it given the fact I already had cancer and have a long history pre-cancerous colon polyps. Having thyroid cancer increases the risk of breast cancer and taking biologics increase the risk of other cancers threefold. I'm not sure if that is worth the risk. One article said some doctors believe biologics shouldn't be used within five years of having cancer. I'm not sure what the magic number is if there even is one.
Terry, I haven't tried Uceris but isn't that budesonide? I've been on the generic and Entocort on and off since 2008 and never had much luck. I'm not sure if a different brand name may prompt new results?
Gabes, you tend to bring up exactly what I don't want to hear.......
I want it to be food related because then it is something that I have control over but just need to figure out. Stress on the other hand (yes, it is within my control but not as simple) is something I'm not sure how to manage since i don't feel that stressed or cannot change because they are just the facts of life (my son's illness, need to work, etc). I absolutely love my job since I've changed employers almost three years ago. I am lucky that I can manage my MC and it doesn't impact my ability to work. I have passed up applying for a higher paying position because it would put me out in the field too much and that has the potential to be nerve-wracking. I'm ok with that though because I love what I do now and have a lot of flexibility when needed. The centennial celebration for my Village that I organized is over. That was a big stressor but I didn't notice any worsening or improvements before or after is was over. My son's illness will always weigh heavy on my mind. I know there is good and bad stress and mostly what I have now are "good" stressors but I don't see that as being an option for change. How does one manage that? I imagine that is then a personal choice in which I am unwilling to change and may have to live with the consequences.........
I am concerned about remaining in the workforce. I fully plan on it because my husband will be retiring in four years and I will need to work for at least seven more years to attain my 30 years of services for full retirement benefits. Realistically, it will be longer than that because that would put me at 53. I will be carrying the health insurance and I won't be able to retire that young. I generally don't look that far ahead because who knows what will change by that time plus the political climate in WI is quite hostile IMO toward the public servant so who knows what the governor will do next should he remain in office for another term. What I plan to do and what my body decides to do are two different things. My husband has made many sacrifices for me and my son over the years and I look at continuing to work as my turn to do something for him. He runs his own woodworking shop as a hobby now and it brings me great joy to think of him being able to do what he loves full time in retirement. Family life makes things more complicated and goes back to personal choices.
As always, I appreciate your thoughts Gabes. I look what you've gone through and it is inspiring.
Tex- dammit..... where is that last piece of the puzzle?
I think I may have found the cause of my MC. After reading your comments I decided to go back to my calendars over the years to compile a list of what I've tried over the years to give a reminder snapshot to my GI so we don't have to go through last week's frustration again. I pull edit out all the alternative choices I've tried since it will just muck up the waters for them. I suffered from horrible migraines in my 20s in which I would have menstrual related migraines that would continue more days during the month than not. I was totally uneducated in everything health related back then and had no clue. Paging through eleven years of me made me shake my head. If I only knew then what I know now....... it's really kind of heartbreaking.
For many, many years I took obscene amounts of ibuprofin and advil cold and sinus for migraines. I cannot figure out why I was so stupid. It never helped and I just kept taking them. It was common to take 3+ ibuprofin at a time.
In 2006 I have notes of taking cipro for a bladder infection and Innopran (propranolol), Maxalt, Lexapro, Relpax, and Imitrex. None helped. I started taking fluxetine in September of 2006 and continued to 2008. I believe now that had I stopped eating all the processed foods, sweets, and other garbage back then, my migraines would have stopped. I haven't had a migraine since I changed my diet.
I found some info about fluxetine causing colitis. Maybe that was my trigger? Not that it matters at this point but I came down with the flu on March 2, 2007 and my D never stopped after that. This is what followed:
2007
ranitidine
Hydrogen breath test - negative
Ciprofloxacin- 1 week
prednisone- 2 months (diarrhea stopped after 4 months and returned when meds were stopped )
found a note in my calendar that the D stopped but the stomach aches/pains and nausea continues, doctor said to continue with soy products
*soy rated worse than gluten on my later enterolab results- that is the cause of my stomach aches
was told to limit dairy, take lactaid, take fiber
Switched to functional medicine (did not help):
orthobiotics
lots of bananas for potassium
cold laser therapy
Dr. Worm drops for parasites
Switched doctors:
Celiac- negative
Asacol- 16 days, made diarhhea worse
2008
Topomax and pamparin for migraines while continuing NSAIDS
Pepto- no change after 4+ weeks
Immodium- no change, caused abdominal cramping
Budesonide- no change
Budesonide/colazal- made diahrea worse after five days
Budesonide/colestipol- made rumbling worse with night issues
2009
Budesonide- no change
Eliminate gluten (was not consistently compliant)
2010-2011 tried alternative therapies- no change
celiac- negative
hydrogen breath test- negative
bioresonance therapy
digestive enzymes
a ton of supplements- only change was a lightening of my wallet
food rotation diet
blood type diet
Probiotics- multiple brands
became very, very sick
Prednisone (up to 40mg)- stopped working, caused bad side effects
Prednisone/cholestyramine
Joined the Microscopic Colitis Support forum and my world changed
2012- 2017
eliminated gluten and later soy, dairy, and eggs- was not totally compliant at first
accupuncture (which led to my thyroid cancer diagnosis)
Budesonide- on and off, not effective, did help with night issues
2013
Total thyroidectomy/papillary thyroid cancer- took over three years to work out medication/put my MC on the back-burner
2017
Lialda - made D worse
Colestipol
Entocort/cholestyramine- no change
July 2017- lymes disease, 3weeks doxycycline (caused yeast infection in the third week), First completely normal stool since 2007
Florajen3 Probiotic (for GI and vaginal health- didn't realize there were two different kinds)
Ubiome testing- tested negative for pathogens: clostridium difficile, salmonella enterica, vibrio cholerae, campylobacter, escherichia-shigella
there was more info listed but I'm not sure how to interpret- rated low on all the healthy reference range of numerous organisms in the gut
Breath test for SIBO- negative but indicative of high methane levels
Metronidazole (anitbiotic)- no change, bad stomach pains
Lugols iodine- no change, concerns with iodine/thyroid
Oil of Oregano- no change except for production of italian type burps
Disaccharidase Deficiency tested from sample from colonoscopy/endoscopy- negative
Atrantil (plant based natural antibiotic)- no change
Xifaxan (antibiotic)- no change
Diphenoxylate/atropine- no change, felt in a daze entire time
So this is me in a snapshot. So easy to look back and see the numerous bad choices. One of my biggest mistakes is not seeking out a GI right away and sticking with one doctor. In 2007 I saw my PCP for the initial issue with D. He retired and I had a new PCP. No progress was made and I was eventually referred to a GI. I switched to him and his god complex frustrated me so after the numerous drugs didn't help I became frustrated and switched to alternative medicine. My GI kicked me out of his practice and I spent years trying to figure it out on my own since the natural route didn't help. That was before I found this site. The encouragement of soy by the doctors did not help. I'm not sure why I continue taking entocort when it does not help. (??) My continued frustrations and dropping out of their radar did me no favors. So here I am back again looking for their opinions.
I do have to chuckle at some of the things I've tried...... desperation opens many doors. Life sometimes gets in the way of what should be done. I pretty much ignored my MC while dealing with my thyroid issues. When my son was dx with primary sclerosing cholangitus in 2011 my focus shifted to him and later he was dx with UC, autoimmune hepatitis, and crohns so each time I became obsessed with what could potentially happen to him. Ironically, he is on a boat-load of meds (all scary) and he is doing ok. It is depressing to hear the RN call him a train wreck on paper...... I wish he wouldn't be on the meds he is on (prednisone, lialda, azathioprine, just discontinued budesonide) but he is leading a very happy life and is symptom free. There are no easy answers and it is quite sobering to look back on a long history of less than ideal choice but it does no good living in what could have been.
It will be interesting to see what gets added to this list.
Terry, I haven't tried Uceris but isn't that budesonide? I've been on the generic and Entocort on and off since 2008 and never had much luck. I'm not sure if a different brand name may prompt new results?
Gabes, you tend to bring up exactly what I don't want to hear.......
I want it to be food related because then it is something that I have control over but just need to figure out. Stress on the other hand (yes, it is within my control but not as simple) is something I'm not sure how to manage since i don't feel that stressed or cannot change because they are just the facts of life (my son's illness, need to work, etc). I absolutely love my job since I've changed employers almost three years ago. I am lucky that I can manage my MC and it doesn't impact my ability to work. I have passed up applying for a higher paying position because it would put me out in the field too much and that has the potential to be nerve-wracking. I'm ok with that though because I love what I do now and have a lot of flexibility when needed. The centennial celebration for my Village that I organized is over. That was a big stressor but I didn't notice any worsening or improvements before or after is was over. My son's illness will always weigh heavy on my mind. I know there is good and bad stress and mostly what I have now are "good" stressors but I don't see that as being an option for change. How does one manage that? I imagine that is then a personal choice in which I am unwilling to change and may have to live with the consequences.........I am concerned about remaining in the workforce. I fully plan on it because my husband will be retiring in four years and I will need to work for at least seven more years to attain my 30 years of services for full retirement benefits. Realistically, it will be longer than that because that would put me at 53. I will be carrying the health insurance and I won't be able to retire that young. I generally don't look that far ahead because who knows what will change by that time plus the political climate in WI is quite hostile IMO toward the public servant so who knows what the governor will do next should he remain in office for another term. What I plan to do and what my body decides to do are two different things. My husband has made many sacrifices for me and my son over the years and I look at continuing to work as my turn to do something for him. He runs his own woodworking shop as a hobby now and it brings me great joy to think of him being able to do what he loves full time in retirement. Family life makes things more complicated and goes back to personal choices.
As always, I appreciate your thoughts Gabes. I look what you've gone through and it is inspiring.
Tex- dammit..... where is that last piece of the puzzle?
I think I may have found the cause of my MC. After reading your comments I decided to go back to my calendars over the years to compile a list of what I've tried over the years to give a reminder snapshot to my GI so we don't have to go through last week's frustration again. I pull edit out all the alternative choices I've tried since it will just muck up the waters for them. I suffered from horrible migraines in my 20s in which I would have menstrual related migraines that would continue more days during the month than not. I was totally uneducated in everything health related back then and had no clue. Paging through eleven years of me made me shake my head. If I only knew then what I know now....... it's really kind of heartbreaking.
For many, many years I took obscene amounts of ibuprofin and advil cold and sinus for migraines. I cannot figure out why I was so stupid. It never helped and I just kept taking them. It was common to take 3+ ibuprofin at a time.
In 2006 I have notes of taking cipro for a bladder infection and Innopran (propranolol), Maxalt, Lexapro, Relpax, and Imitrex. None helped. I started taking fluxetine in September of 2006 and continued to 2008. I believe now that had I stopped eating all the processed foods, sweets, and other garbage back then, my migraines would have stopped. I haven't had a migraine since I changed my diet.I found some info about fluxetine causing colitis. Maybe that was my trigger? Not that it matters at this point but I came down with the flu on March 2, 2007 and my D never stopped after that. This is what followed:
2007
ranitidine
Hydrogen breath test - negative
Ciprofloxacin- 1 week
prednisone- 2 months (diarrhea stopped after 4 months and returned when meds were stopped )
found a note in my calendar that the D stopped but the stomach aches/pains and nausea continues, doctor said to continue with soy products
*soy rated worse than gluten on my later enterolab results- that is the cause of my stomach aches
was told to limit dairy, take lactaid, take fiber
Switched to functional medicine (did not help):
orthobiotics
lots of bananas for potassium
cold laser therapy
Dr. Worm drops for parasites
Switched doctors:
Celiac- negative
Asacol- 16 days, made diarhhea worse
2008
Topomax and pamparin for migraines while continuing NSAIDS
Pepto- no change after 4+ weeks
Immodium- no change, caused abdominal cramping
Budesonide- no change
Budesonide/colazal- made diahrea worse after five days
Budesonide/colestipol- made rumbling worse with night issues
2009
Budesonide- no change
Eliminate gluten (was not consistently compliant)
2010-2011 tried alternative therapies- no change
celiac- negative
hydrogen breath test- negative
bioresonance therapy
digestive enzymes
a ton of supplements- only change was a lightening of my wallet
food rotation diet
blood type diet
Probiotics- multiple brands
became very, very sick
Prednisone (up to 40mg)- stopped working, caused bad side effects
Prednisone/cholestyramine
Joined the Microscopic Colitis Support forum and my world changed
2012- 2017
eliminated gluten and later soy, dairy, and eggs- was not totally compliant at first
accupuncture (which led to my thyroid cancer diagnosis)
Budesonide- on and off, not effective, did help with night issues
2013
Total thyroidectomy/papillary thyroid cancer- took over three years to work out medication/put my MC on the back-burner
2017
Lialda - made D worse
Colestipol
Entocort/cholestyramine- no change
July 2017- lymes disease, 3weeks doxycycline (caused yeast infection in the third week), First completely normal stool since 2007
Florajen3 Probiotic (for GI and vaginal health- didn't realize there were two different kinds)
Ubiome testing- tested negative for pathogens: clostridium difficile, salmonella enterica, vibrio cholerae, campylobacter, escherichia-shigella
there was more info listed but I'm not sure how to interpret- rated low on all the healthy reference range of numerous organisms in the gut
Breath test for SIBO- negative but indicative of high methane levels
Metronidazole (anitbiotic)- no change, bad stomach pains
Lugols iodine- no change, concerns with iodine/thyroid
Oil of Oregano- no change except for production of italian type burps
Disaccharidase Deficiency tested from sample from colonoscopy/endoscopy- negative
Atrantil (plant based natural antibiotic)- no change
Xifaxan (antibiotic)- no change
Diphenoxylate/atropine- no change, felt in a daze entire time
So this is me in a snapshot. So easy to look back and see the numerous bad choices. One of my biggest mistakes is not seeking out a GI right away and sticking with one doctor. In 2007 I saw my PCP for the initial issue with D. He retired and I had a new PCP. No progress was made and I was eventually referred to a GI. I switched to him and his god complex frustrated me so after the numerous drugs didn't help I became frustrated and switched to alternative medicine. My GI kicked me out of his practice and I spent years trying to figure it out on my own since the natural route didn't help. That was before I found this site. The encouragement of soy by the doctors did not help. I'm not sure why I continue taking entocort when it does not help. (??) My continued frustrations and dropping out of their radar did me no favors. So here I am back again looking for their opinions.
I do have to chuckle at some of the things I've tried...... desperation opens many doors. Life sometimes gets in the way of what should be done. I pretty much ignored my MC while dealing with my thyroid issues. When my son was dx with primary sclerosing cholangitus in 2011 my focus shifted to him and later he was dx with UC, autoimmune hepatitis, and crohns so each time I became obsessed with what could potentially happen to him. Ironically, he is on a boat-load of meds (all scary) and he is doing ok. It is depressing to hear the RN call him a train wreck on paper...... I wish he wouldn't be on the meds he is on (prednisone, lialda, azathioprine, just discontinued budesonide) but he is leading a very happy life and is symptom free. There are no easy answers and it is quite sobering to look back on a long history of less than ideal choice but it does no good living in what could have been.
It will be interesting to see what gets added to this list.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb
Yes it is budesonide but 3 yrs ago when all hell broke loose for me I was put on Entocort 9MG for 3 months then taper off for 1 month
never did A thing for me my D3 was low and I did not know until the end of treatment.
My new GI put me on Uceris for 2 months early this summer and I saw improvement but I was only taking D3 when I felt like it.
All hell broke loose in September when I spent the night in the hospital for chest pains I swear they put butter in the green beans and I told them GF DF.Well after lab work and A app.with my GI and I'm back on Uceris long term now and this morning 48 hrs after the first pill I have formed stools not perfect but what A improvement I have been back on D3 for 3 weeks preparing for A steroid.
I have been 3 yrs with my good days and bad days thinking this is my life forever but now things are changing Uceris is for UC but my GI
prefers to prescribe it less side effects.($1700.A month and there is no generic)
Terry
Yes it is budesonide but 3 yrs ago when all hell broke loose for me I was put on Entocort 9MG for 3 months then taper off for 1 month
never did A thing for me my D3 was low and I did not know until the end of treatment.
My new GI put me on Uceris for 2 months early this summer and I saw improvement but I was only taking D3 when I felt like it.
All hell broke loose in September when I spent the night in the hospital for chest pains I swear they put butter in the green beans and I told them GF DF.Well after lab work and A app.with my GI and I'm back on Uceris long term now and this morning 48 hrs after the first pill I have formed stools not perfect but what A improvement I have been back on D3 for 3 weeks preparing for A steroid.
I have been 3 yrs with my good days and bad days thinking this is my life forever but now things are changing Uceris is for UC but my GI
prefers to prescribe it less side effects.($1700.A month and there is no generic)
Terry
Thanks for sharing your experience- sorry for what you’ve gone through. I will raise the question with them. I’d rather add it to my list of “been there, done that- doesn’t work for me” than to just assume it won’t. I am lucky to have good Rx coverage.
I was paranoid with my hospital stay too. Didn’t trust anyone to take my diet seriously since I don’t have any true allergies to any foods. Anyone who has walked a block in our shoes would know how serious intolerances are.
I'm still a bit fixated on the docycycline..... I'd almost like to try it one more time to see if it was merely a fluke. I continued eating my regular limited diet and took the same dose of Armour with the same lab numbers at that time and achieved normalcy without even trying. I even ate raw carrots everyday with no issues. So what bacteria was wiped out that allowed me to achieve a very short lived remission? I'm thinking of getting on E-bay to see if maybe the owners manual for Deb is out there. I'd be willing to pay a premium if it spelled out what the heck is going in my guts.
I was paranoid with my hospital stay too. Didn’t trust anyone to take my diet seriously since I don’t have any true allergies to any foods. Anyone who has walked a block in our shoes would know how serious intolerances are.
I'm still a bit fixated on the docycycline..... I'd almost like to try it one more time to see if it was merely a fluke. I continued eating my regular limited diet and took the same dose of Armour with the same lab numbers at that time and achieved normalcy without even trying. I even ate raw carrots everyday with no issues. So what bacteria was wiped out that allowed me to achieve a very short lived remission? I'm thinking of getting on E-bay to see if maybe the owners manual for Deb is out there.
I'd be willing to pay a premium if it spelled out what the heck is going in my guts.Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb--the only way I got relief from carpal tunnel: empty freezer cubes in bucket, add water, plunge my damaged limb into the icy water as long as I could stand it.
I have not tried uceris but would consider trying it. WHat do you have to lose.
Not sure if you've tried LDN? I have not. Monique seems to be a good resource on it. Whoops, just saw you are taking LDN.
Biologics--I think Joe and another lady from the northeast who both go to the same doc took Imuran a biologic. I can't remember the ladies name but Joe would know. I think the lady took Imuran for maybe 8 months. Joe met both her and her husband but I can't remember her name. It has been awhile since she posted.
University medical center--if you go have low expectations. I expect they will push the biologics. I live in a University medical center town. My gastro doc #2 is at the University medical center. I went to her due to pressure from my boss. I was kind of on the upswing when I went but another forum member from TAmpa went to my same Univ medical center doc. The member from Tampa is now in hospice/palliative care if I remember from remicade/biologic use (she has posted on here but I don't recall the details).
If you decide to go to Madison consider go for 2nd opinion or redirection. i.e. Try to keep some kind of doc locally to treat you. It is really inconvenient to be treated by a doctor 3 or 4 hours away. You've struggled for a long time. It may be worth taking a day off from work to see what they say but I would try to keep the "doctoring" local otherwise you have to drive 3-4 hours for followups etc.
The other thing about going to a University medical center is they may want to test you for everything under the sun. GI doc #2 had me scheduled for MRI scan of my guts. Tex said it would be a waste. Luckily I overslept and never got the MRI of my guts. I also spent $3000 on meaningless blood work for food allergies ordered by GI doc #2. If you decide to go consider have referring doc specify you want second opinion medication discussion, you prefer to be treated locally due to where you live. This would hopefully prevent MRI's bloodwork, colonoscopies etc in Madison.
I have not tried uceris but would consider trying it. WHat do you have to lose.
Not sure if you've tried LDN? I have not. Monique seems to be a good resource on it. Whoops, just saw you are taking LDN.
Biologics--I think Joe and another lady from the northeast who both go to the same doc took Imuran a biologic. I can't remember the ladies name but Joe would know. I think the lady took Imuran for maybe 8 months. Joe met both her and her husband but I can't remember her name. It has been awhile since she posted.
University medical center--if you go have low expectations. I expect they will push the biologics. I live in a University medical center town. My gastro doc #2 is at the University medical center. I went to her due to pressure from my boss. I was kind of on the upswing when I went but another forum member from TAmpa went to my same Univ medical center doc. The member from Tampa is now in hospice/palliative care if I remember from remicade/biologic use (she has posted on here but I don't recall the details).
If you decide to go to Madison consider go for 2nd opinion or redirection. i.e. Try to keep some kind of doc locally to treat you. It is really inconvenient to be treated by a doctor 3 or 4 hours away. You've struggled for a long time. It may be worth taking a day off from work to see what they say but I would try to keep the "doctoring" local otherwise you have to drive 3-4 hours for followups etc.
The other thing about going to a University medical center is they may want to test you for everything under the sun. GI doc #2 had me scheduled for MRI scan of my guts. Tex said it would be a waste. Luckily I overslept and never got the MRI of my guts. I also spent $3000 on meaningless blood work for food allergies ordered by GI doc #2. If you decide to go consider have referring doc specify you want second opinion medication discussion, you prefer to be treated locally due to where you live. This would hopefully prevent MRI's bloodwork, colonoscopies etc in Madison.
The carpel tunnel is the worst. It generally flare a couple times a year but this one is particularly nasty. I do the splints at night and have worn them since I was in my 20s. I used to be an interpreter for the deaf a lifetime ago and was paranoid about my hands/wrists. The ice doesn't do much but I use it.
I've been on LDN now for a couple years if I remember correctly, except for going off it last week. It was reassuring that it is somewhat beneficial even though it doesn't totally eliminate the pain. There doesn't seem to be a down side to it and considering I've already had cancer I plan to continue on it. It hasn't done anything to help my MC although I would highly recommend trying it to anyone who may be debating. Anyone with thyroid issues does need to heed the warning of starting low and slowly increasing the dose..... it can cause major heart palpitation issues. I experienced it first hand and though I was going to die. My doctor wasn't familiar with it and I didn't do enough research before taking it. I ended up wearing a holter heart monitor, was found to have no issues, paid a lot of money for testing, and eventually my body adjusted. Hard lesson learned.
I'm not too eager to jump ship and find a new GI. I was last week when I felt I was being brushed off but we worked through that period of bad communication. I went to Madison to see my second endo. I didn't find she had any new ideas for thyroid treatment and had the same opinion as you- stay close to home because traveling 2 1/2 hours for office visits doesn't make sense. I do have to say she was quite a bit more open minded when it came to NDT but not enough to let me give it a try. My son also goes to Madison for his liver care under a team of doctors. Thankfully they hold office hours at my GI's office in town every other month so we have been able to schedule appointments here. He doesn't have much of a choice since when it comes time for a liver transplant- he will be going there. It creates a headache of preauthorizations with the insurance company but that's just the way it is. I plan to avoid that option if possible.
One of the reasons I held off on parting ways with my GI last week was simply for the testing reason. I would be starting from scratch and would most likely have to duplicate some of the same things I've done before. Also, since my GI is actually out of the country it really wasn't his actions that made me fly off the handle. I was dealing with his office who was trying to do their best to manage me in his absence. I'm trying to adopt a new attitude since I know they aren't purposefully out to get me by picking everything that doesn't work and most of the time, makes me worse. I had a bad week last week and a very short temper. Ah, the lesson of patience..... again. Unlike my thyroid, they aren't withholding a treatment that I would like to try so I might as well just suck it up a little while longer and keep trying with them.
I'm hoping Tex is right in that I could be just around the corner in finding something that works.
I'm sorry you ended going through testing all over again. Spending money on duplications is tough.
I've been on LDN now for a couple years if I remember correctly, except for going off it last week. It was reassuring that it is somewhat beneficial even though it doesn't totally eliminate the pain. There doesn't seem to be a down side to it and considering I've already had cancer I plan to continue on it. It hasn't done anything to help my MC although I would highly recommend trying it to anyone who may be debating. Anyone with thyroid issues does need to heed the warning of starting low and slowly increasing the dose..... it can cause major heart palpitation issues. I experienced it first hand and though I was going to die. My doctor wasn't familiar with it and I didn't do enough research before taking it. I ended up wearing a holter heart monitor, was found to have no issues, paid a lot of money for testing, and eventually my body adjusted. Hard lesson learned.
I'm not too eager to jump ship and find a new GI. I was last week when I felt I was being brushed off but we worked through that period of bad communication. I went to Madison to see my second endo. I didn't find she had any new ideas for thyroid treatment and had the same opinion as you- stay close to home because traveling 2 1/2 hours for office visits doesn't make sense. I do have to say she was quite a bit more open minded when it came to NDT but not enough to let me give it a try. My son also goes to Madison for his liver care under a team of doctors. Thankfully they hold office hours at my GI's office in town every other month so we have been able to schedule appointments here. He doesn't have much of a choice since when it comes time for a liver transplant- he will be going there. It creates a headache of preauthorizations with the insurance company but that's just the way it is. I plan to avoid that option if possible.
One of the reasons I held off on parting ways with my GI last week was simply for the testing reason. I would be starting from scratch and would most likely have to duplicate some of the same things I've done before. Also, since my GI is actually out of the country it really wasn't his actions that made me fly off the handle. I was dealing with his office who was trying to do their best to manage me in his absence. I'm trying to adopt a new attitude since I know they aren't purposefully out to get me by picking everything that doesn't work and most of the time, makes me worse. I had a bad week last week and a very short temper. Ah, the lesson of patience..... again. Unlike my thyroid, they aren't withholding a treatment that I would like to try so I might as well just suck it up a little while longer and keep trying with them.
I'm hoping Tex is right in that I could be just around the corner in finding something that works.
I'm sorry you ended going through testing all over again. Spending money on duplications is tough.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb,
Reading your history makes me wonder how much damage the NSAIDs may have done to your digestive system. Because of that, you might be be extra sensitive to disadvantageous (undesirable) gut microbiome arrangements. That may be why you responded so well to the Doxycycline. Doxycycline is a broad-spectrum antibiotic. It probably kills most gut bacteria.
I'm wondering whether it would be worthwhile to follow a doxycycline (or some other tetracycline antibiotic) treatment with a fecal transplant procedure (or two). Following the antibiotic with a probiotic is another (simpler) option, but frankly I don't have much faith in conventional probiotics. The problem with probiotics (as I see it), is that they will slow down repopulation attempts by other bacteria, but they aren't capable of introducing the correct strains — only a fecal transplant can do that. Consequently they are not particularly helpful.
Ideally, (IMO), you would be better off with no gut bacteria, but that's not a practical option, because we are all doomed to host the little parasites, whether we like it or not. So if we have to do it, we're better off initiating a balance of species that are known to work OK for other humans, than risking pot luck populations.
Yes, I realize that fecal transplants don't work to treat MC (for everyone else). But you're not everyone else. What works for everyone else doesn't work for you, so just maybe, what doesn't work for everyone else, might work for you.
Any thoughts, anyone?
Tex
Reading your history makes me wonder how much damage the NSAIDs may have done to your digestive system. Because of that, you might be be extra sensitive to disadvantageous (undesirable) gut microbiome arrangements. That may be why you responded so well to the Doxycycline. Doxycycline is a broad-spectrum antibiotic. It probably kills most gut bacteria.
I'm wondering whether it would be worthwhile to follow a doxycycline (or some other tetracycline antibiotic) treatment with a fecal transplant procedure (or two). Following the antibiotic with a probiotic is another (simpler) option, but frankly I don't have much faith in conventional probiotics. The problem with probiotics (as I see it), is that they will slow down repopulation attempts by other bacteria, but they aren't capable of introducing the correct strains — only a fecal transplant can do that. Consequently they are not particularly helpful.
Ideally, (IMO), you would be better off with no gut bacteria, but that's not a practical option, because we are all doomed to host the little parasites, whether we like it or not. So if we have to do it, we're better off initiating a balance of species that are known to work OK for other humans, than risking pot luck populations.
Yes, I realize that fecal transplants don't work to treat MC (for everyone else). But you're not everyone else. What works for everyone else doesn't work for you, so just maybe, what doesn't work for everyone else, might work for you.
Any thoughts, anyone?
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.
Forgot to mention . . . Back when we used to stack bags of corn most of the day, carpal tunnel was a constant (debilitating) problem. We found that if we wore good wrist splints while we worked, that prevented the problem. We still wore wrist splints while we slept occasionally, but usually wearing them all the time while we stacked bags was sufficient to prevent the problem.
Tex
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.