Hi Everyone,
It's been a while since I've posted anything, but I've been lurking and reading and learning every day. Given how much I've benefited from this site, I thought I would give an update and write about what seems to have been helping me if it's any use for anyone.
I was diagnosed with LC in August after about 3-4 weeks of WD. Prior to that (March/April) I had been diagnosed with 2 melanomas (in situ, so treatable but STRESSFUL) and had been given zoloft in May but which I stopped in early July because I thought it might be causing the D. Now I'm at a point where I feel almost 100% okay, so I thought I would write about what seemed to help me. I realize that some of the things I've done might not seem consistent with others' experiences or helpful for everyone, so please keep that in mind. I don't want to lead anyone astray at all. Also, I always seem to confound my own experiments, so I end up trying multiple things at once and don't know which is ultimately the thing that's working best (or if it's a combination).
-My Dr. put me on the pepto treatment, and was hesitant to give me entocort. When he ultimately relented about the entocort, the pepto seemed to be kicking in, so I never did take the entocort.
-At first I ate very very bland things. Mostly potatoes, some chicken, very few raw veggies. This was about 3 weeks or so.
-I started feeling like kefir was helping me, though I''m not sure about that. It seemed to sooth my stomach, but wasn't completely sure it was helping. I worried about the dairy, so I tended to cut back on that.
-Pretty much got rid of gluten and dairy (except the occasional kefir). The gluten was easy to avoid for me for whatever reason. I didn't really try to avoid soy as much, though would steer clear if I had a choice.
-The hardest thing for me to give up was raw fruits and veggies, so after about a month and a half, I started to add them back in slowly.
-Vitamin-wise I took probiotics (I actually like Pearls the best, though it may have some ingredients that are of issue for some people). I also take vitamin D, L-Glutimate, curcumin, and a multi-vitamin.
-I had this never ending pain/cramp in my left side that started right after the colonoscopy. They shrugged their shoulders, but it was the main complaint for me. I asked for Bentyl, and I used it quite a bit at first but now only maybe one every other day. Another doctor also suggested that I try a low-dose anti-depressant. Now this pain is really barely noticable at all. Now they think it might be adhesions that from a hysterectomy that were aggravated during the colonoscopy, so they're giving me a trigger-point injection on Monday. But the pain is really almost gone now.
-At the start of the D in the summer I also had a sinus/inner ear infection that was horrific. In my heart of hearts, I think the MC and the sinus were related, but my doctors shook their heads about it. I feel like my body was fighting and inflamed in head and gut-- i think they were part of the same reaction. So finally I couldn't take it anymore (hearing sensitivity, etc.) and asked for z-pac for it. While taking it I took massive doses of pro-biotics, and I somehow think all of this was helping -- getting rid of the bad and putting back in the good.
-So two weeks ago I came up to the 8-week point on the pepto. I was scared to death to stop it cold turkey. I know it can be toxic, so I was being bad. But I decided to wean myself -- a little each day. Now I'm down to one tablet/day (rather than 8/day), and I think I can give that up.
As all of you on here know, this disease is a bear. I can't begin to describe (including to doctors) how SYSTEMIC it feels. Yea, it's the stomach, but it's also the head, and rest of the body -- the whole thing. To be coming out of this now and feeling human is an incredible gift. And I wanted to let folks here know how much I've learned from everyone here and how grateful I am. At this point I'm pretty much off the pepto, taking vitamins and probiotics, and eating well -- avoiding gluten and most dairy, but otherwise, fine. I'm not sure if I've had success because this was drug-induced (zolof) or what. I don't know.
Again, I know what I've done won't be right for everyone at all, but I thought I would just share if it's helpful for others. I'd love to hear how others are doing, too.
My many thanks,
Mary
Update -- Feeling Good
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
One other thing I forgot! I had read recently about how tart cherry juice is a good anti-inflammatory. So I've been drinking that (often mixed with fizzy water) at most meals. I think it's excellent! Love it.
And here's one last thing -- a recipe for those who are able to eat beans. I've taken a south-Indian cooking class for many years, and this is my teacher's recipe. It doesn't really taste all that "Indian" to me -- just hearty and wonderful. It can easily be modified. And though there are only a few spices in there, it is incredibly flavorful. People always rave when I feed them this soup. It freezes so well, that I actually double this recipe and have it on hand. Hope you enjoy it.
Mary
Black Bean Soup
Ingredients
10 Sun dried tomatoes (chopped)
1.5 cup finely chopped onions
3 garlic cloves, minced
1 jalapeño chili and/or ¼ tsp cayenne
2 TBS vegetable oil
1 tsp cumin seeds
3 cups canned tomatoes chopped (fresh tomatoes are lots better, and I use a food
processor to speed things up)
4 cups cooked black beans (I just use cans)
1 beet root boiled and chopped (I use canned)
2 carrots chopped
1 sweet potato or regular potato, diced
1 cup butternut squash, diced
Salt and Pepper (including white pepper) to taste (she adds a LOT of salt – like a small palm full)
½ bunch chopped cilantro
Method:
-In butter/oil, sauté cumin seeds, onion, chili, and garlic. After a few minutes, add a pinch of chili power and white pepper.
-Add salt.
-Add chopped potatoes, butternut squash, carrots, and cilantro.
-Add tomatoes
-Cover with water and bring to a boil (covered)
-As soon as the potato is cooked, add the beet root and beans (no need to drain)
-When it comes to a boil, it’s ready.
-To make it thicker, take out and puree about three cups (or use a hand blender)
And here's one last thing -- a recipe for those who are able to eat beans. I've taken a south-Indian cooking class for many years, and this is my teacher's recipe. It doesn't really taste all that "Indian" to me -- just hearty and wonderful. It can easily be modified. And though there are only a few spices in there, it is incredibly flavorful. People always rave when I feed them this soup. It freezes so well, that I actually double this recipe and have it on hand. Hope you enjoy it.
Mary
Black Bean Soup
Ingredients
10 Sun dried tomatoes (chopped)
1.5 cup finely chopped onions
3 garlic cloves, minced
1 jalapeño chili and/or ¼ tsp cayenne
2 TBS vegetable oil
1 tsp cumin seeds
3 cups canned tomatoes chopped (fresh tomatoes are lots better, and I use a food
processor to speed things up)
4 cups cooked black beans (I just use cans)
1 beet root boiled and chopped (I use canned)
2 carrots chopped
1 sweet potato or regular potato, diced
1 cup butternut squash, diced
Salt and Pepper (including white pepper) to taste (she adds a LOT of salt – like a small palm full)
½ bunch chopped cilantro
Method:
-In butter/oil, sauté cumin seeds, onion, chili, and garlic. After a few minutes, add a pinch of chili power and white pepper.
-Add salt.
-Add chopped potatoes, butternut squash, carrots, and cilantro.
-Add tomatoes
-Cover with water and bring to a boil (covered)
-As soon as the potato is cooked, add the beet root and beans (no need to drain)
-When it comes to a boil, it’s ready.
-To make it thicker, take out and puree about three cups (or use a hand blender)
Hi Mary,
This is an interesting disease, because of the differences in the way that we respond as individuals, not only to the symptoms, but to the various treatments, as well.
I agree with you, MC tends to affect almost every organ in the body, for many/most of us. It's difficult to believe/understand that until you actually experience it. It's a shame that all GI specialists can't experience it, because that would provide them with some valuable insight into the workings of the disease.
Thanks for the update/progress report, and the tips on what seemed to help.
Tex
This is an interesting disease, because of the differences in the way that we respond as individuals, not only to the symptoms, but to the various treatments, as well.
I agree with you, MC tends to affect almost every organ in the body, for many/most of us. It's difficult to believe/understand that until you actually experience it. It's a shame that all GI specialists can't experience it, because that would provide them with some valuable insight into the workings of the disease.
Thanks for the update/progress report, and the tips on what seemed to help.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wow...that's great that you can go down to one Pepto a day! I'm currently weaning down from a 7-week dosage of 8 pills/day. You're right....it can cause problems if you take it too long. Luckily, I haven't had one problem with it. I worry too about getting off of it....even going down to 4. So, it's good to hear how well it's working for you with one pill.
Interesting about the Kefir. I've held off due to the dairy issue. But I do know of one lady (not of this forum) who took it and thinks her D was greatly reduced because of it. I'm totally too scared to try that at this point but maybe in the future.
Love to hear stories like yours. Gives me hope!
And thanks for the recipes! I know I can't do beans now but hope to in the future. I ate Limas last night and got a little bloated and gassy even on Pepto!
Terri
Interesting about the Kefir. I've held off due to the dairy issue. But I do know of one lady (not of this forum) who took it and thinks her D was greatly reduced because of it. I'm totally too scared to try that at this point but maybe in the future.
Love to hear stories like yours. Gives me hope!
And thanks for the recipes! I know I can't do beans now but hope to in the future. I ate Limas last night and got a little bloated and gassy even on Pepto!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Terri,
I'm glad the pepto worked so well for you, too! I've been following along your posts because we were on the same program. I really didn't have any problems with it either, but when the sinus/inner ear infection starting to affect my hearing, I did worry about tinnitus (sp?). But it wasn't the pepto. I pretty much did the chewable ones throughout the duration, but when I was reaching the end point I switched to the tablets you can swallow. I was sick and tired of brushing my tongue with a tooth brush all the time to avoid it turning black. Yuk!
It sounds like we have similar reactions. I was diagnosed around the same time, I'm 48 years old, so older than you
, but close! 
Really keeping my fingers crossed for you when you get of the pepto.
Yours,
Mary
I'm glad the pepto worked so well for you, too! I've been following along your posts because we were on the same program. I really didn't have any problems with it either, but when the sinus/inner ear infection starting to affect my hearing, I did worry about tinnitus (sp?). But it wasn't the pepto. I pretty much did the chewable ones throughout the duration, but when I was reaching the end point I switched to the tablets you can swallow. I was sick and tired of brushing my tongue with a tooth brush all the time to avoid it turning black. Yuk!
It sounds like we have similar reactions. I was diagnosed around the same time, I'm 48 years old, so older than you
, but close! Really keeping my fingers crossed for you when you get of the pepto.
Yours,
Mary
Thanks so much Mary! Cross every thing you can for me....lol! Glad the Pepto wasn't the cause of your ear infection. I do worry about tinnitus as well, but have been lucky. This is going to sound crazy but I just love my Pepto tablets.....it's like a snack for me....miss my sugar...lol! I unfortunately couldn't swallow the tablets as they didn't have a coating and they would stick in my throat. Have always had a problem swallowing pills. And oh yes, the black tongue! Mine is only black a little in the back. It's probably best that you are taking those tablets as they probably don't have the aspartame that the chewables have and I think mine has Mannitol as well. Some of us don't tolerate a lot of the sugar alcohols or the artificial sweeteners.
Hope we both go into remission soon! I turn 46 tomorrow!
Terri
Hope we both go into remission soon! I turn 46 tomorrow!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Terri,
Pharmaceutical manufacturers have a real knack for shooting themselves (and their customers) in the foot.
Tex
Pharmaceutical manufacturers have a real knack for shooting themselves (and their customers) in the foot.
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.