Thought I’d check in and get some feedback/advice on where I am now, and if it is time to consider other options, or stay the course with my very limited diet. It would be easier to be patient with current limitations if I think I’m on the right track. Right now it seems I’m not seeing much improvement, but maybe I have unreasonable expectations.
To recap from past posts: I was dx’d with CC Jan 2019 at age 50, but didn’t have many symptoms then, and it wasn’t really interfering with my life. I could just tell over the past 2-3 years I’d gotten gradually worse, from reliable normans to a state where I had about 2-3 hour window after eating breakfast where I wanted to be near a toilet, soft serve stool, some D, but no gas, cramping or other problems. My mom and her sister have CC and LC respectively. When the D increased some, I decided to “get serious” about investigating my problem and found this forum, read Tex’s book, and got tested by Enterolab. My test results weren’t very good – reactive to most everything and gene tested for 1 celiac, 1 gluten sensitive gene, and steatorrhea. I went GF, DF, SF, chicken-egg-free around July 4, and have been on turkey, lamb, pork bacon, duck eggs, coffee with almond or coconut milk, sweet potato, and Terra chips, and that’s about it. For 2 months I had no sweet potato and maybe that transition to carnivore might explain the increase in D and some explosive watery D. I also dropped 10-12 lbs in 8 weeks, which I could afford to do but don’t want to continue for too long (I am 5’5” and 135 now). Side note: the other plus side to the weight loss is now it seems a little more obvious to me that my enlarged abdomen isn’t just extra weight, or the byproduct of having had 3 sons, or not having awesome ab muscles, but due to bloating as well. No fun looking 3+ month pregnant when I’m definitely OUT of that business, LOL!
When it was clear life had not improved on the healing diet, but instead worsened, I posted a few times on the board here and decided to give cholestyramine a try. I wish I’d kept better records (I now have a spreadsheet) from this time, but it did help some in terms of fewer trips to the bathroom and watery, explosive D. I used Sandoz regular for 2 weeks (2 packets a day) and was considering increasing the dose, when I had a terrible mysterious attack on Sept.3. Horrible knife-like pains, gas that wouldn’t pass, and for several hours where all I could do was pretty much lie on the floor. I also had tenderness in lower left quadrant of abdomen, in two adjacent spots (one might have been down towards ovary, and it was right before my period). It felt like the gas couldn’t get pass that spot – I could burp some, but not have flatulence. Never had this happened before and I sure don’t want a repeat. Someone on the board suggested it could be ovarian cyst – maybe so. My GP later said it wasn’t in the right spot for pancreatitis, and my Jan 2019 colonoscopy never mentioned diverticulitis as a concern. It took 2 more days to get back to feeling kinda normal. There was a lot of churning and noise, so much so that it woke me up at night when I turned over in bed. I have no idea if it was an ovarian cyst (but why gas?), something I ate (seemingly all the same as before), or a reaction to 2 weeks of cholestyramine (whose side effects listed include gas, ab pain, and D).
To try to reset, I stopped cholestyramine around Sept. 6. A “good” day in the past 3 weeks means I might have 4-5 trips to the bathroom, mix of 6 (sawdust, or in raggedy pieces like the Bristol chart shows) and 7 (WD with pieces usually). A bad day would be more like 9 trips to bathroom, more 7’s than 6.
So that’s where I am now. Is this progress? Keep being patient? I could re-try the cholestyramine and hope the Weird Incident was a fluke. I have also read on this forum about Betaine HCL and wonder if that could be a factor. From some googling, it is not clear to me how often docs would actually test you for either BAM or low stomach acid before trying a drug to see if it works. The scientist in me would like to know something for sure, ha.
Thanks for any insights, and as always, for the support.
Keep on keepin' on, or try something new?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
It sounds like you are having a rough time, and I hope someone else can chime in with something more helpful. I don't have any advice, but I can relate in some ways to your journey, though it seems mine is having a happier outcome than yours at this point.
My story parallels yours pretty closely. I was diagnosed in 2018 with lymphocytic colitis, but it was really just a nuisance (not debilitating) and I went into full remission with Entocort (but had a rough time with taking the drug over that period because I also have diabetes and it made my blood sugar unmanageable).
Then, at the beginning of July this year it came back with a vengeance--WD (10 - 20 episodes of WD a day in the first few weeks), cramping, bloating, pain, nausea, lack of appetite, excessive fatigue, brain fog (possibly caused by stress or the Wellbutrin that I had started to take about seven weeks before my relapse). I found this forum in mid-July and started the elimination diet around the third week of July (GF, DF, SF, chicken egg free, fibre free, sugar free and free of spices, artificial sweeteners). I wanted to avoid using Entocort because of my previous experience.
Things started to improve a little for me near the end of August (4 -7 episodes of WD daily). I got the Enterolab testing and it showed I reacted to everything except cashews. Seriously, cashews? That helped me refine my diet a bit more (I had been eating a few foods that the results showed I reacted to [chicken, pork and white potatoes). I have been living off water, lamb, turkey, game meat, quail eggs, sweet potatoes, carrots and cauliflower since then.
I was then prescribed Lodalis (a bile acid sequestrant like cholestyramine), but took very few doses before things kind of resolved (mostly fours on the Bristol chart and rarely more than two). I think it was the diet that caused the improvement, but can't be certain.
I did have other evidence that the diet was contributing to healing (the eczema I have had for years cleared up completely; my itchy eyes stopped itching).
I have also lost 30 pounds (that I could afford to lose initially, though I don't have any room to drop more). Just this week, as I have begun to introduce a few new foods and added some snacks (more quail eggs and lamb), the weight loss has seemed to stall, so I am hoping I can stabilize soon.
Anyway, we are all different, but I am writing to say that it took me a few months of a very restrictive diet to show improvement (no prepared foods whatsoever and very little variety) and the prescription may have helped, I am not sure.
I hope somebody chimes in with something concrete that may help you. And I hope your recovery is right around the corner.
My story parallels yours pretty closely. I was diagnosed in 2018 with lymphocytic colitis, but it was really just a nuisance (not debilitating) and I went into full remission with Entocort (but had a rough time with taking the drug over that period because I also have diabetes and it made my blood sugar unmanageable).
Then, at the beginning of July this year it came back with a vengeance--WD (10 - 20 episodes of WD a day in the first few weeks), cramping, bloating, pain, nausea, lack of appetite, excessive fatigue, brain fog (possibly caused by stress or the Wellbutrin that I had started to take about seven weeks before my relapse). I found this forum in mid-July and started the elimination diet around the third week of July (GF, DF, SF, chicken egg free, fibre free, sugar free and free of spices, artificial sweeteners). I wanted to avoid using Entocort because of my previous experience.
Things started to improve a little for me near the end of August (4 -7 episodes of WD daily). I got the Enterolab testing and it showed I reacted to everything except cashews. Seriously, cashews? That helped me refine my diet a bit more (I had been eating a few foods that the results showed I reacted to [chicken, pork and white potatoes). I have been living off water, lamb, turkey, game meat, quail eggs, sweet potatoes, carrots and cauliflower since then.
I was then prescribed Lodalis (a bile acid sequestrant like cholestyramine), but took very few doses before things kind of resolved (mostly fours on the Bristol chart and rarely more than two). I think it was the diet that caused the improvement, but can't be certain.
I did have other evidence that the diet was contributing to healing (the eczema I have had for years cleared up completely; my itchy eyes stopped itching).
I have also lost 30 pounds (that I could afford to lose initially, though I don't have any room to drop more). Just this week, as I have begun to introduce a few new foods and added some snacks (more quail eggs and lamb), the weight loss has seemed to stall, so I am hoping I can stabilize soon.
Anyway, we are all different, but I am writing to say that it took me a few months of a very restrictive diet to show improvement (no prepared foods whatsoever and very little variety) and the prescription may have helped, I am not sure.
I hope somebody chimes in with something concrete that may help you. And I hope your recovery is right around the corner.
I would suspect the weird incident could be tied out to the cholestyramine. Of course you will never know.
I also had a weird incident on cholestyramine. The cholestyramine worked really great for me.
Unfortunately 30 days in my throat started constricting from it. Apparently this can be a side effect
of many many drugs. Sadly I had to stop the cholestryamine.
I'll write on timetable when I have a bit more time.
I also had a weird incident on cholestyramine. The cholestyramine worked really great for me.
Unfortunately 30 days in my throat started constricting from it. Apparently this can be a side effect
of many many drugs. Sadly I had to stop the cholestryamine.
I'll write on timetable when I have a bit more time.
Hi,
I'm finally getting back to talk about timetable. There are several recent threads in which people are healing from diet alone and I'd encourage you to read those threads, also.
I think time table of healing through diet alone can vary widely. Young people will heal faster than older people. Middle aged people will heal faster than those in their 80's or 90's. There are a lot of prescription drugs that prevent healing and even hormones (birth control pills or hormone replacement therapy) can prevent healing.
My experience in healing from foods (no drugs):
First time--initial flare. Age 50. After I found this forum and went GF and was eating mostly chickent and rice I'd say it took about 6 weeks to go from WD to soft serve once a day. I also was going to
a meditative yoga class 3x per week to relieve stress. Once I got to soft serve once a day it was consistent daily soft serve. After about 6 weeks of soft serve once a day I went on Entocort. I didn't think I needed it but I caved to the pressure of my employer and friends that I had to get on a drug.
Second time--reflare. Age 57. I had 9 months of WD. I think mentally I was in somewhat of denial and thought I would magically kick out of the flare. I've been GF since initial flare up 7 years prior but was eating a wide variety of foods. I also was taking a lot of supplements. After 9 months of WD I decided I better get proactive. I switched to eating just chicken, rice, bananas and a bit of coconut oil (I was clearly reacting to olive oil--normally i'm okay with olive oil). I eliminated all of my supplements. This was a really hard decision as the oral mag glycinate really, really helps me sleep. I switched to epsom salt baths and foot soaks. I also switched to getting my vitamin D to going outside 15 minutes a day in the sun. I also implemented meditation. I set my cell phone alarm to go off every two hours. Every two hours at work I would do a relaxation meditation for 5 minutes. Within two weeks of doing all of this I got
to consistent soft serve once a day. Second time I never took any drugs.
First time: It took me 6-1/2 weeks to get to consistent soft serve
Second time: Depends on how you look at things. Technically it took me 9-1/2 months but another way to look at things was it took me 2 weeks.
Once you get to consistent once a day soft serve consistency toileting is very predictable and manageable.
Hopefully this helps. Understand MC healing can be slow. Many times if you look back 6 weeks prior it looks like you are not getting anywhere but when you think about it 6 weeks prior you had WD 3 x per day and now you are down to WD 1x per day. It is not uncommon to look at a 6 week period and see improvement, albeit minor improvement.
I do think the stress management helped with healing both times. Being in an active MC flare really ramps up the stress. The first time I went to Amrit Yoga and Yoga Nidra class
3 x a week at 6:00 am. I put my mat near the door in case I had to run to the bathroom. Class was 90 minutes. The last 30 minutes was all guided meditation.
Second time I did my own mediation protocol. I mediated/prayer 3 minutes out of every 2 hours at work.
Two recent posters have talked about their healing over the last 6 months and I'd encourage you to look at those threads also.
I'm finally getting back to talk about timetable. There are several recent threads in which people are healing from diet alone and I'd encourage you to read those threads, also.
I think time table of healing through diet alone can vary widely. Young people will heal faster than older people. Middle aged people will heal faster than those in their 80's or 90's. There are a lot of prescription drugs that prevent healing and even hormones (birth control pills or hormone replacement therapy) can prevent healing.
My experience in healing from foods (no drugs):
First time--initial flare. Age 50. After I found this forum and went GF and was eating mostly chickent and rice I'd say it took about 6 weeks to go from WD to soft serve once a day. I also was going to
a meditative yoga class 3x per week to relieve stress. Once I got to soft serve once a day it was consistent daily soft serve. After about 6 weeks of soft serve once a day I went on Entocort. I didn't think I needed it but I caved to the pressure of my employer and friends that I had to get on a drug.
Second time--reflare. Age 57. I had 9 months of WD. I think mentally I was in somewhat of denial and thought I would magically kick out of the flare. I've been GF since initial flare up 7 years prior but was eating a wide variety of foods. I also was taking a lot of supplements. After 9 months of WD I decided I better get proactive. I switched to eating just chicken, rice, bananas and a bit of coconut oil (I was clearly reacting to olive oil--normally i'm okay with olive oil). I eliminated all of my supplements. This was a really hard decision as the oral mag glycinate really, really helps me sleep. I switched to epsom salt baths and foot soaks. I also switched to getting my vitamin D to going outside 15 minutes a day in the sun. I also implemented meditation. I set my cell phone alarm to go off every two hours. Every two hours at work I would do a relaxation meditation for 5 minutes. Within two weeks of doing all of this I got
to consistent soft serve once a day. Second time I never took any drugs.
First time: It took me 6-1/2 weeks to get to consistent soft serve
Second time: Depends on how you look at things. Technically it took me 9-1/2 months but another way to look at things was it took me 2 weeks.
Once you get to consistent once a day soft serve consistency toileting is very predictable and manageable.
Hopefully this helps. Understand MC healing can be slow. Many times if you look back 6 weeks prior it looks like you are not getting anywhere but when you think about it 6 weeks prior you had WD 3 x per day and now you are down to WD 1x per day. It is not uncommon to look at a 6 week period and see improvement, albeit minor improvement.
I do think the stress management helped with healing both times. Being in an active MC flare really ramps up the stress. The first time I went to Amrit Yoga and Yoga Nidra class
3 x a week at 6:00 am. I put my mat near the door in case I had to run to the bathroom. Class was 90 minutes. The last 30 minutes was all guided meditation.
Second time I did my own mediation protocol. I mediated/prayer 3 minutes out of every 2 hours at work.
Two recent posters have talked about their healing over the last 6 months and I'd encourage you to look at those threads also.
Thanks for taking the time to write such a detailed reply, Brandy. I really appreciate it. It is definitely easier to review progress now that I have a spreadsheet to doublecheck my overall impressions. I am hopeful that I am making some progress since my last post. Overall I guess there are fewer trips to the bathroom, and fewer Bristol 6 or 7s, more 5's. I retried eliminating pork bacon and this week has been better, with even a 3 and 4 showing up, to my amazement. Of course, later some 7's returned in the same day, so I suppose I shouldn't get too excited. Reintroduced pork today so we'll see. I can be patient. I just don't want to persist too long down the wrong track.
Good update. It sounds like you are moving in the right direction.
Short term two food things you might consider changing--
Terra chips--short term consider eliminate and switch to sweet potato, rice or potato
Understand most of us can tolerate these in remission.
"milk" for coffee--when I'm struggling I do better with the coconut milk that comes in a can that does not have any of the gums in it, ingredients should be coconut and water. I have to read the labels of coconut milk in my grocery and coconut milk is on the shelves in three areas in my grocery. The almond milk has too many ingredients for me when I am struggling.
Most of us can tolerate the commercial almond milks when we are in remission.
Short term two food things you might consider changing--
Terra chips--short term consider eliminate and switch to sweet potato, rice or potato
Understand most of us can tolerate these in remission.
"milk" for coffee--when I'm struggling I do better with the coconut milk that comes in a can that does not have any of the gums in it, ingredients should be coconut and water. I have to read the labels of coconut milk in my grocery and coconut milk is on the shelves in three areas in my grocery. The almond milk has too many ingredients for me when I am struggling.
Most of us can tolerate the commercial almond milks when we are in remission.
Re:
Thank you for sharing that detailed history Brandy.
I am wondering where these two recent threads are?
Also, when you got back to "soft serve", is that when you re-introduced other foods and if so, how quickly etc? Are you now able to eat anything? Do you get short flares ever? I am trying to get an idea of what my future might entail. ;)
Re: Keep on keepin' on, or try something new?
Obviously I'm not Brandy. I haven't seen any posts from her since we moved to this new board. I have a hunch that she might be out of state, taking care of her mom. I hope she's still OK.
Here are links to several recent update posts. She may have been referring to a couple of these.
Collagenous Colitis: Remission, no medication, feeling great
Update
6 months update
I doubt that she tried to reintroduce any foods before she was back in full remission, with normal, formed bowel movements. And she sticks with her diet, to avoid any of her food sensitivities. Otherwise, she would surely relapse. Short flares can happen if the diet is accidentally briefly compromised. But if the diet is compromised repeatedly, the flare will quickly become a full-fledged relapse.
Tex
Here are links to several recent update posts. She may have been referring to a couple of these.
Collagenous Colitis: Remission, no medication, feeling great
Update
6 months update
I doubt that she tried to reintroduce any foods before she was back in full remission, with normal, formed bowel movements. And she sticks with her diet, to avoid any of her food sensitivities. Otherwise, she would surely relapse. Short flares can happen if the diet is accidentally briefly compromised. But if the diet is compromised repeatedly, the flare will quickly become a full-fledged relapse.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Keep on keepin' on, or try something new?
Also, when you got back to "soft serve", is that when you re-introduced other foods and if so, how quickly etc? Are you now able to eat anything? Do you get short flares ever? I am trying to get an idea of what my future might entail. ;)
Sadly there is no black and white formula for this. Everyone is different
we react to change of seasons, stress (mental, emotional, physical).
my learnings of the past 10 years of having MC
- there is mild reaction liquid D for a couple of hours after periods of stress or eating the wrong thing resolves within 3 hours
- medium reaction - goes for about 24 hours
- Flare - more than 24 hours
for all of these, i go back to bland basics, small servings, 3-4 ingredients. Increase the Vit D, do magnesium soaks to relieve the inflammation, do some mental and emotional work if it is related to stress
if you formulate the MC management plan that works for you - your budget, your lifestyle, your family, etc then the future is minimal symptoms most of the time.
some people have next to no symptoms long term. Some people have frequent occurrences.
hope this helps
Sadly there is no black and white formula for this. Everyone is different
we react to change of seasons, stress (mental, emotional, physical).
my learnings of the past 10 years of having MC
- there is mild reaction liquid D for a couple of hours after periods of stress or eating the wrong thing resolves within 3 hours
- medium reaction - goes for about 24 hours
- Flare - more than 24 hours
for all of these, i go back to bland basics, small servings, 3-4 ingredients. Increase the Vit D, do magnesium soaks to relieve the inflammation, do some mental and emotional work if it is related to stress
if you formulate the MC management plan that works for you - your budget, your lifestyle, your family, etc then the future is minimal symptoms most of the time.
some people have next to no symptoms long term. Some people have frequent occurrences.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Keep on keepin' on, or try something new?
Thank you Gabes, yes it does.
Stress is definitely a trigger for me too.
When you go back to basics after those episodes, how low do you have to usually do that for? (I understand this would be different for everyone, but I find examples useful)
Stress is definitely a trigger for me too.
When you go back to basics after those episodes, how low do you have to usually do that for? (I understand this would be different for everyone, but I find examples useful)
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Keep on keepin' on, or try something new?
Til i feel right!
learn to listen to your body. its not just about poop quality
its about energy, mental focus, anxiety, sleep quality
it can be a day, a couple of days or even weeks
it just depends on what is happening
when my energy is good, sleep quality has been good, anxiety is gone, then I will stop the bland basics.
learn to listen to your body. its not just about poop quality
its about energy, mental focus, anxiety, sleep quality
it can be a day, a couple of days or even weeks
it just depends on what is happening
when my energy is good, sleep quality has been good, anxiety is gone, then I will stop the bland basics.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Keep on keepin' on, or try something new?
Perfect. Thank you.
Yes, I am getting much better at listening to my body. I used to ignore signals, but now I don't. Sometimes even after just a sip of something (e.g I tried a decaf coffee at home) my body will let me know it won't go down well, so I stop. :)
Yes, I am getting much better at listening to my body. I used to ignore signals, but now I don't. Sometimes even after just a sip of something (e.g I tried a decaf coffee at home) my body will let me know it won't go down well, so I stop. :)
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Keep on keepin' on, or try something new?
one thing i do is I dont perceive bland basics as a punishment
for me it is the nurturing my body needs. like when we hug and rub a baby's back when they are crying
I also plan/budget for treats - this weekend I will be having some treats for my birthday so for the week previous I have been having bland basics so that I can handle the treats...
for me it is the nurturing my body needs. like when we hug and rub a baby's back when they are crying
I also plan/budget for treats - this weekend I will be having some treats for my birthday so for the week previous I have been having bland basics so that I can handle the treats...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Keep on keepin' on, or try something new?
I love that analogy about the baby. I feel the same and do really enjoy what I am eating. I guess I just have days here and there, usually when I am tired and haven't stayed on top of preparing ahead and planning, when i wish i had more variety. I definitely find broths and soups nurturing, so need to make more again.
Happy Birthday and enjoy those treats!
Happy Birthday and enjoy those treats!