Hi - I am a 34 year old F and was recently diagnosed with CC after a colonscopy last week. I have had diarrhea for about 3 months now, usually 5-6 times a day, mostly after I ate. Prior to this, I had a very healthy, clean foods, high fiber diet. Not working so much now!
My dr suggested starting with Entocort, but I asked to begin with the Pepto/Lotomil first. I am taking Pepto 8 times a a day, one Lomotil at night, and 1/2 a Lomotil in the morning. The first morning after I began taking the Pepto I started having some solid BM's already. Does that mean I am having a good reaction to it and it is working?
I am also working on healing my inflammation by following a lot of the dietary suggestions here. I am doing tea instead of coffee, avoiding most grains (oatmeal is actually soothing and I can tolerate sprouted bread), low fiber, only fruit is banana. I have also been taking a multivitamin, fish oil, probiotic since before this and am now adding metamucil and L-glutamine, as well as using collagen powder in my oatmeal and tea. I feel normal (digestively, still tired) for the first time in months but I am so afraid to get my hopes up! I read some of the stories on this board and I am terrified that I am going to face this the rest of my life and end up housebound and in Depends at some point. I did have an accident last week in my car and it was mortifying and scary. I have several trips coming up, one overseas, and I just want to be able to enjoy myself.
My husband and family and I also travel a LOT, go out to eat a lot, etc. I read some of the stories and it seems like some people just never get better. Is it a good sign that I responded so fast to the Pepto? Or am I just fooling myself and it will come back when I stop it?
Thanks!
New Diagnosis, feeling better already?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Meggie,
Welcome to our Internet family. Your response to the Pepto treatment is very likely real, and it was indeed a fast response. We all respond differently to medications. Lucky you.
If you really want to avoid the gloomy scenario that you painted for the future, you can easily do it, but to do it you will almost surely need to ditch the sprouted bread if it contains any flour from any of the grains in the triticale family (wheat-related grains). Contrary to popular (but erroneous) claims, sprouting does not remove all of the gluten from grain, so sprouted grain still causes intestinal damage to those of us who produce antibodies to those grains. And that probably includes oats. I say "probably" because there may be 1 or 2 of us here who are not sensitive to oats, but the lion's share of us definitely are sensitive to it. You will discover that truth when you wean off the Pepto, if you continue to eat either sprouted grains or oats.
Some health "experts" tout the value of ancient grains such as spelt, but contrary to their claims, spelt contains the same type of gluten that causes us to react if we eat wheat, rye, and barley. It just contains less, so it takes a bit longer to destroy our guts. For most of us, 1 or 2 molecules of gluten is enough to cause damage to our gut, so so-called "low gluten" foods are not an option for us.
Remember that "healthy" means nothing to CC. It only understands "bland". IOW, to heal our gut we have to eat a bland diet that totally avoids each and every one of our food sensitivities. And we have to do it long enough to allow our gut to do some serious healing to repair all the damage caused by the inflammation. After we are in remission for a while, then we can be concerned with balancing our diet and making sure that our diet is supplying our needs for good long-term health. As long as we are reacting though, most of the nutrients and vitamins in those foods are going into the toilet, so there is no point in trying to eat a balanced diet during the recovery period.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Your response to the Pepto treatment is very likely real, and it was indeed a fast response. We all respond differently to medications. Lucky you.
If you really want to avoid the gloomy scenario that you painted for the future, you can easily do it, but to do it you will almost surely need to ditch the sprouted bread if it contains any flour from any of the grains in the triticale family (wheat-related grains). Contrary to popular (but erroneous) claims, sprouting does not remove all of the gluten from grain, so sprouted grain still causes intestinal damage to those of us who produce antibodies to those grains. And that probably includes oats. I say "probably" because there may be 1 or 2 of us here who are not sensitive to oats, but the lion's share of us definitely are sensitive to it. You will discover that truth when you wean off the Pepto, if you continue to eat either sprouted grains or oats.
Some health "experts" tout the value of ancient grains such as spelt, but contrary to their claims, spelt contains the same type of gluten that causes us to react if we eat wheat, rye, and barley. It just contains less, so it takes a bit longer to destroy our guts. For most of us, 1 or 2 molecules of gluten is enough to cause damage to our gut, so so-called "low gluten" foods are not an option for us.
Remember that "healthy" means nothing to CC. It only understands "bland". IOW, to heal our gut we have to eat a bland diet that totally avoids each and every one of our food sensitivities. And we have to do it long enough to allow our gut to do some serious healing to repair all the damage caused by the inflammation. After we are in remission for a while, then we can be concerned with balancing our diet and making sure that our diet is supplying our needs for good long-term health. As long as we are reacting though, most of the nutrients and vitamins in those foods are going into the toilet, so there is no point in trying to eat a balanced diet during the recovery period.
Again, welcome aboard, and please feel free to ask anything.
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.
-
Meggie1129
- Posts: 13
- Joined: Sun Sep 20, 2015 2:46 pm
Hi Maggie!!!
You'll get your life back, it will just take a little work and a lot of patience.
I'm 32, diagnosed with CC at 30. The major D started the day after my 30th birthday, while I was visiting Montreal eating all sorts of crazy things and drinking way way too much. Doctors all seemed to think it would just go away, but after a few months it was to the point where I couldn't work. I had an accident while sitting in bed with the husband. Yeah, mortifying. He joked around about buying me depends...didn't go over so well...
It's really overwhelming to think that this is your life now. It doesn't help that microscopic colitis has been shown to get worse with stress. It's a cycle where you're sick, you get tired, you get upset, and then you get sicker. Well it doesn't have to be like this.
Diet is huge. It's also exciting that you are responding to Pepto. Personally, I went down to a very limited diet at first and then added food over time. Some foods to try include squash, sweet potato, turkey and rice. I know, boring, but over time you can add in more foods. Your best bet is to avoid processed food, gluten, dairy, and soy. This doesn't mean that you can't eat out. I love eating out! I make a point of eating at restaurants with a dedicated chef and fresh ingredients. I run in to trouble at places like Olive Garden or TGI Fridays because most of their food is processed and frozen. The bonus here is that you eat at much nicer places!
This diagnosis doesn't mean the end of travel. I just got back from Vegas the other week and I'm headed to San Francisco on Thursday. Since my CC diagnosis I have been to Iceland, Hawaii, Ireland, the UK, Paris and Holland! I'm going to Iceland again over Christmas and then off to London in May. We also do a lot of weekend trips and outdoor activities. I ran a race in Toronto two weeks ago and went to Niagara Falls for a hike down the gorge last weekend.
You'll get there. It's just a frustratingly slow process.
For quinoa, I couldn't eat it for about a year after my diagnosis, but now I can no problem as long as I don't have it every day. It's actually a good alternative to oatmeal if you cook it in some almond milk and eat it with cinnamon and some honey.
You'll get your life back, it will just take a little work and a lot of patience.
I'm 32, diagnosed with CC at 30. The major D started the day after my 30th birthday, while I was visiting Montreal eating all sorts of crazy things and drinking way way too much. Doctors all seemed to think it would just go away, but after a few months it was to the point where I couldn't work. I had an accident while sitting in bed with the husband. Yeah, mortifying. He joked around about buying me depends...didn't go over so well...
It's really overwhelming to think that this is your life now. It doesn't help that microscopic colitis has been shown to get worse with stress. It's a cycle where you're sick, you get tired, you get upset, and then you get sicker. Well it doesn't have to be like this.
Diet is huge. It's also exciting that you are responding to Pepto. Personally, I went down to a very limited diet at first and then added food over time. Some foods to try include squash, sweet potato, turkey and rice. I know, boring, but over time you can add in more foods. Your best bet is to avoid processed food, gluten, dairy, and soy. This doesn't mean that you can't eat out. I love eating out! I make a point of eating at restaurants with a dedicated chef and fresh ingredients. I run in to trouble at places like Olive Garden or TGI Fridays because most of their food is processed and frozen. The bonus here is that you eat at much nicer places!
This diagnosis doesn't mean the end of travel. I just got back from Vegas the other week and I'm headed to San Francisco on Thursday. Since my CC diagnosis I have been to Iceland, Hawaii, Ireland, the UK, Paris and Holland! I'm going to Iceland again over Christmas and then off to London in May. We also do a lot of weekend trips and outdoor activities. I ran a race in Toronto two weeks ago and went to Niagara Falls for a hike down the gorge last weekend.
You'll get there. It's just a frustratingly slow process.
For quinoa, I couldn't eat it for about a year after my diagnosis, but now I can no problem as long as I don't have it every day. It's actually a good alternative to oatmeal if you cook it in some almond milk and eat it with cinnamon and some honey.
Just wanted to add, that although it's not really pushed on the forum, I can't say enough good things about exercise.
Since we seem to be negatively affected by stress, it can help to find some method of stress management. For me that has been exercising. I highly recommend doing something physical every day, even if it's just getting up and walking around your street. It really helps.
Since we seem to be negatively affected by stress, it can help to find some method of stress management. For me that has been exercising. I highly recommend doing something physical every day, even if it's just getting up and walking around your street. It really helps.
The problem is that most of us here are sensitive to the avenin in oats. Avenin is the storage protein in oats that's the equivalent of the gluten in wheat that we react to.Meggie wrote:Thanks so much for your response! What about GF oats and quinoa? Are those okay?
If you happen to be one of the fortunate few who are not sensitive to avenin, then yes, certified gluten-free oats should be safe for you. Most of us here don't have that option, however.
Even if oats happen to be safe for you, be careful with the quantity in each serving, because oats are a rather high-fiber food, and fiber is not our friend while we are recovering. IOW fiber is very abrasive and it irritates our gut when it is already inflamed. So if we overdo the fiber, that can irritate our gut enough to prevent us from controlling the inflammation and achieving remission. After we have been in remission long enough to allow some substantial intestinal healing, then we can slowly begin to increase the amount of fiber in our diet again.
Kosher quinoa is safe (because it's certified to be gluten-free). Non-Kosher quinoa is notorious for cross-contamination with barley or other gluten-containing grains however, so read the labels carefully.
And I certainly agree with Chemgirl that moderate exercise can be relaxing and therapeutic, and therefore very beneficial as part of our recovery program. We just have to keep in mind that our body uses most of our available energy resources to fight the inflammation, so we almost always have to tone down our activities a notch or 2 while we are recovering.
You're very welcome,
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.
-
Meggie1129
- Posts: 13
- Joined: Sun Sep 20, 2015 2:46 pm
I definitely exercise regularly, but my workouts have suffered the past few months. I still average 3-4 times a week though. Chemgirl, my questions is for you. How did you treat your CC? How long did it take before you got results? Have you had any flares, have you treated those? How long of a timespan of occurrence and in between? How long before you started adding foods back into your bland diet? Do you still follow gluten, dairy, soy free? Do you drink coffee or any alcohol? It is so frustrating. We are going to Ireland in 2 weeks and then San Fran/Sonoma/Monterey a month after that and I am afraid I cannot eat anything! Part of what I enjoy about traveling is enjoying the local food and drink. And I think I spoke too soon about feeling good, my stomach has been bothering me all afternoon now and I did have a kind of frequent BM after dinner (although it was fairly firm still, tmi). Thanks again!
Hi Meggie. Welcome. I am not on as often as I use to be because I am in remission ( so, yes... it can happen). What I'd like to say is that you must be patient. I was Dx over three years ago. I drastically changed my diet and took all the advise from this forum ( except, I continued to eat eggs). High protein, low fiber, GF, DF, SF, no nightshades, acid foods, very little sugar, no fruit, no salad, no coffee, no artificial sweeteners, only olive and coconut oils,...etc. I also did a six month stint with Entocort, slowly weaning the dose down over that time. I didn't change my diet for the entire six months. My gut healed. I slowly tested some foods in like potatoes and corn products. I have added OTC antihistamines . That was the last piece to the puzzle for me. I'd say it took at least a year to be able to add fiber back in ( raw veggies, beans, and popcorn). Now that I am three years out, I can even cheat a bit with dairy and soy in small quantities! So, I am here to tell you that you can heal, but you have to do the hard work and sacrafice for the present time. Good luck!
Leah
Leah
Hi Meggie,
Just wanted to say that I traveled to Ireland a couple of years ago, and it is very easy to eat gluten free there. I was 2-1/2 years out from my diagnosis, though, and had been gluten/soy/dairy free for all that time; your situation is trickier.
if you go to the local Tesco supermarket there, you will find GF snacks that you can keep handy. I ate lots of delicious, simply prepared fish and shellfish while there. Be forewarned, however, that pub food is probably not a good choice for you. And beer definitely isn't. Try whiskey instead, which is GF, if you choose to drink. I liked Powers. And there's wine.
We also just got back from a trip to CA, and I ate out at any number of places, went to wineries, no problem.
I take Imodium most days while traveling, just for a little added security. I would also try the Entocort as soon as possible before the trip--it might give you good results while you get your diet under control.
I totally agree with Leah. Patience is the key to living with this disease. There are no quick fixes. I felt much better after giving up gluten/dairy/soy. It took the better part of two years to regain my exercise stamina, and I still fatigue more easily. But I'm over 60, so I guess that accounts for some of it.
Just wanted to say that I traveled to Ireland a couple of years ago, and it is very easy to eat gluten free there. I was 2-1/2 years out from my diagnosis, though, and had been gluten/soy/dairy free for all that time; your situation is trickier.
if you go to the local Tesco supermarket there, you will find GF snacks that you can keep handy. I ate lots of delicious, simply prepared fish and shellfish while there. Be forewarned, however, that pub food is probably not a good choice for you. And beer definitely isn't. Try whiskey instead, which is GF, if you choose to drink. I liked Powers. And there's wine.
We also just got back from a trip to CA, and I ate out at any number of places, went to wineries, no problem.
I take Imodium most days while traveling, just for a little added security. I would also try the Entocort as soon as possible before the trip--it might give you good results while you get your diet under control.
I totally agree with Leah. Patience is the key to living with this disease. There are no quick fixes. I felt much better after giving up gluten/dairy/soy. It took the better part of two years to regain my exercise stamina, and I still fatigue more easily. But I'm over 60, so I guess that accounts for some of it.
Suze
Hi Maggie,
I'm not sure you're going to like this because the path to healing is long.
I treated my CC with diet and without medication. After a few weeks of watery D I started eating a very limited diet. By the time I was diagnosed I was down to 3 or 4 trips to the bathroom per day, which my doctor agreed was manageable so she encouraged me to wait before trying medications.
Everything I ate consisted of the same 4 or 5 ingredients for a few months. It was pretty frustrating. About 3 months in I was eating rice, potatoes, squash, some cooked and peeled veggies, turkey, chicken, and fish. I would try adding things one at a time because it was pretty obvious when something didn't work for me. At a year out I was eating salads and fibrous foods in limited quantities. If I went overboard and had a kale salad it would be bad, but a bit of spinach was ok. Now, almost 2 years later, I can eat most things, but I still avoid gluten and soy. Dairy seems to be ok if I keep it to small amounts.
I haven't really had any major flares yet, but I will have periods of 2-3 days where I have watery D. This usually happens if I'm overly stressed out about something, or eat something I shouldn't (so less and less frequent, maybe once every month at first, but recently I was on a 6 month win until the husband had a medical emergency). When in a flare I just go back to basics with food and avoid anything that might be remotely irritating (dairy, fiber, coffee). This is also where stress management comes in. Luckily the D hasn't decided to stick around.
As far as eating on your trips, unfortunately that might be a bit of a challenge this early on. I'm really hoping that the pepto works for you and you can have a great trip. If not, maybe budesonide or Imodium might be a good idea so you can get through the travel.
When travelling, we try to find accommodations with a kitchen so we can cook some meals ourselves. We reserve eating out for nicer restaurants or earth-to-table style places that use fresh ingredients. I explain my restrictions to the waiter before ordering and they often come back with chef suggestions for me to choose from. It helps that I have a good friend with Celiac who is a major foodie so she gives me a heads up on interesting local places that are safe. My local Thai place knows me now and has a whole list of things I can eat.
Overall it's a big adjustment and a lot of work. It's just worth it. If no gluten means I don't have another accident then I'll never eat it again.
Where are you headed in Ireland? DH's mom lives in the UK so we did a road trip around the entire island. It's gorgeous!
I'm not sure you're going to like this because the path to healing is long.
I treated my CC with diet and without medication. After a few weeks of watery D I started eating a very limited diet. By the time I was diagnosed I was down to 3 or 4 trips to the bathroom per day, which my doctor agreed was manageable so she encouraged me to wait before trying medications.
Everything I ate consisted of the same 4 or 5 ingredients for a few months. It was pretty frustrating. About 3 months in I was eating rice, potatoes, squash, some cooked and peeled veggies, turkey, chicken, and fish. I would try adding things one at a time because it was pretty obvious when something didn't work for me. At a year out I was eating salads and fibrous foods in limited quantities. If I went overboard and had a kale salad it would be bad, but a bit of spinach was ok. Now, almost 2 years later, I can eat most things, but I still avoid gluten and soy. Dairy seems to be ok if I keep it to small amounts.
I haven't really had any major flares yet, but I will have periods of 2-3 days where I have watery D. This usually happens if I'm overly stressed out about something, or eat something I shouldn't (so less and less frequent, maybe once every month at first, but recently I was on a 6 month win until the husband had a medical emergency). When in a flare I just go back to basics with food and avoid anything that might be remotely irritating (dairy, fiber, coffee). This is also where stress management comes in. Luckily the D hasn't decided to stick around.
As far as eating on your trips, unfortunately that might be a bit of a challenge this early on. I'm really hoping that the pepto works for you and you can have a great trip. If not, maybe budesonide or Imodium might be a good idea so you can get through the travel.
When travelling, we try to find accommodations with a kitchen so we can cook some meals ourselves. We reserve eating out for nicer restaurants or earth-to-table style places that use fresh ingredients. I explain my restrictions to the waiter before ordering and they often come back with chef suggestions for me to choose from. It helps that I have a good friend with Celiac who is a major foodie so she gives me a heads up on interesting local places that are safe. My local Thai place knows me now and has a whole list of things I can eat.
Overall it's a big adjustment and a lot of work. It's just worth it. If no gluten means I don't have another accident then I'll never eat it again.
Where are you headed in Ireland? DH's mom lives in the UK so we did a road trip around the entire island. It's gorgeous!