Since I haven't had D for a long time now, and when I take enough products to have any Normal person in the toilet with D for 2 weeks I finally have a BM, which is formed but not Norman, I decided to challenge myself to see what happened.
Note: my head is FAR from clear, I ache all over, I am super, super fatigued, so I wasn't starting from a great point. But I had C rather than D
I ate goat's milk yogurt and cheese. No reaction other than the above. Nothing new.
I tried chewing gum. Not even a gurgle, but some extra stomach aches, body pain and fatigue. But it keeps the GERD down as well as my sugar intake. Continued C. Not too bad, with only 2 sticks of gum in a day
I put an egg in the bread I made. Narry a gurgle, or a fart. Just stomach ache.
I ATE an egg. Oh boy, that was a stomach ache and a half. Felt like I needed to fart, to go, to do ANYTHING to get something to happen. But it didn't, until I doubled up on the laxative stuff.
I ate some salad (delicious) more of the above.
I ate a piece of bagel, and was in agony from the above. The only gurgles are when I lie flat on my back. But NO D!!
The bloating is horrible. When I try to pull my stomach in it feels like I am severely bruised inside.
When I am seated there is terrific pressure on my lower abdomen and my anus. I stand up, nothing happens.
My head is fuzzy beyond belief.
When I had D the Norco I was taking helped to keep it under control somewhat, but not completely. I have been cutting as much of the Norco as possible. Sometimes I can be without it for 3 whole days if I go in the pool and the hot tub, and do very little else, but on the 4th day the pain is SO bad I have to take it and can't do anything.
When I do manage to get going I will have 2 or 3 non Norman but formed BMs after horrible cramps and pains, and that's the end of that for the next few days or more.
So what can I conclude? Is this MY particular form of MC? The burning on eating, the C, the pain and exhaustion? Nothing seems to help, nothing changes.
Do I eat meat, white fish and potatoes and miralax, stool softeners, swiss Kriss and so on forever, and just struggle on?
Does anyone else have this form of this crazy disease?
Where do I go from here? Any ideas?
My crazy, upside down MC!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Lesley,
I'm so sorry you're feeling awful! The symptoms I can relate to, but I don't understand them any better than you do. The only thing I've been able to conclude so far is that potato starch is just as bad for me as potatoes, it just doesn't give me D.
If you do figure something out, be sure to let me know!
I'm so sorry you're feeling awful! The symptoms I can relate to, but I don't understand them any better than you do. The only thing I've been able to conclude so far is that potato starch is just as bad for me as potatoes, it just doesn't give me D.
If you do figure something out, be sure to let me know!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Lesley,
I don't think my issues are nearly as bad as yours, but I have had to up my fiber intake quite a bit in order to keep things moving, and even then I feel like every BM is an Event, when it should be just a normal part of the day. I will get D from casein and potatoes, and gluten if I have enough of it (a small amount will just make me miserable). Most foods just cause C, abdominal pain, gassiness, nausea, etc. I do know that feeling of pressure, and of feeling like your digestive tract has turned to concrete!
I also don't have the GERD issues you have, though I suspect I may have some mild reflux.
I don't think my issues are nearly as bad as yours, but I have had to up my fiber intake quite a bit in order to keep things moving, and even then I feel like every BM is an Event, when it should be just a normal part of the day. I will get D from casein and potatoes, and gluten if I have enough of it (a small amount will just make me miserable). Most foods just cause C, abdominal pain, gassiness, nausea, etc. I do know that feeling of pressure, and of feeling like your digestive tract has turned to concrete!
I also don't have the GERD issues you have, though I suspect I may have some mild reflux.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Lesley
i think the idea about acupuncture is a good one--I don't know if Medicare would cover it.
Medicare does cover my visits and tests with an integrative medicine physician here--she just did a full stool study to evaluate what is happening in my intestines during this current bout of D. They tend to focus on non-drug solutions, but mine has prescribed drugs as needed. Could you find an integrative physician near you? They look at a lot of things at the same time trying to find answers for you. I have had problems with neurotransmitters, bacterial imbalances, etc. (no surprise with MC) and many other things that they have treated me for, with some success. I just think you are not getting the care you need. Or, if there is no integrative practitioner, what about a family medicine person--maybe your PCP is family medicine, and you said that she hasn't been very helpful. My experience with family doctors is that they are more flexible, better listeners, and more willing to try something innovative than the specialists.
It's so hard to think about other doctors and alternative practitioners when you are so tired and in pain. But from what you have shared, you are not getting the responsiveness and care that you need, and you might be able to find some more help with other treatments.
I have not had a C problem so I don't have many of your symptoms, but I do have pressure and pain in the lower/abdomen rectum a lot of the time.
Here's hoping for some improvement.
You should not be suffering all this
i think the idea about acupuncture is a good one--I don't know if Medicare would cover it.
Medicare does cover my visits and tests with an integrative medicine physician here--she just did a full stool study to evaluate what is happening in my intestines during this current bout of D. They tend to focus on non-drug solutions, but mine has prescribed drugs as needed. Could you find an integrative physician near you? They look at a lot of things at the same time trying to find answers for you. I have had problems with neurotransmitters, bacterial imbalances, etc. (no surprise with MC) and many other things that they have treated me for, with some success. I just think you are not getting the care you need. Or, if there is no integrative practitioner, what about a family medicine person--maybe your PCP is family medicine, and you said that she hasn't been very helpful. My experience with family doctors is that they are more flexible, better listeners, and more willing to try something innovative than the specialists.
It's so hard to think about other doctors and alternative practitioners when you are so tired and in pain. But from what you have shared, you are not getting the responsiveness and care that you need, and you might be able to find some more help with other treatments.
I have not had a C problem so I don't have many of your symptoms, but I do have pressure and pain in the lower/abdomen rectum a lot of the time.
Here's hoping for some improvement.
You should not be suffering all this
Lesley,
I tried looking at your posts to see which foods you know you can't eat and you have written a lot here, so I'm wondering if you would write down what you do eat. I know I can't eat tapioca, which is in Udi's breads and nearly all GF flours and if I'm correct you can't eat rice either, which is also in nearly everything GF.
Connie
I tried looking at your posts to see which foods you know you can't eat and you have written a lot here, so I'm wondering if you would write down what you do eat. I know I can't eat tapioca, which is in Udi's breads and nearly all GF flours and if I'm correct you can't eat rice either, which is also in nearly everything GF.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Which is why I make everything. I don't buy products. I can eat tapioca, but prefer to use potato starch, which I am sure of. I can eat oatmeal, but I make sure it's gluten free. I'm soaking some for breakfast tomorrow.
I eat beef, lamb, rabbit, (all grass fed), fish (so far all are OK), potatoes, coconut products, oatmeal (not daily), peas, spinach, cabbage, carrots, onion in dishes (all veggies well cooked), banana infrequently, soaked prunes infrequently (to help the C) seeds (individually tested) in my granola, which is made with honey and canola oil, soy free spread, a little goat cheese every now and again, cooked fruit from frozen in home made ice cream, baked apples. I had some quinoa yesterday, and it seemed to be OK. I make bread with sorghum, potato flour and millet. I eat about 2 thin slices a day. It really lasts. And rock candy to keep the GERD down.
If something upsets me and I am not sure what I go back to potatoes mashed with stock (home made) and a bit of meat till it settles down.
That's about it. Limited, but I try to make as many variations as I can.
Susan, Nancy - I spent fortunes on acupuncture. I was dying for it to help, but it didn't.
Kaiser doesn't have an integrative physician. They are so "sub specialtied" that it's extremely constricting.
Cynthia. Whatever you have that it making you miserable is just as bad as my misery. The burning on eating seems to be unique to me.
Oh well, slog on!
I am going to bed. Night my friends, without whom I would probably be in a straight jacket by now.
I eat beef, lamb, rabbit, (all grass fed), fish (so far all are OK), potatoes, coconut products, oatmeal (not daily), peas, spinach, cabbage, carrots, onion in dishes (all veggies well cooked), banana infrequently, soaked prunes infrequently (to help the C) seeds (individually tested) in my granola, which is made with honey and canola oil, soy free spread, a little goat cheese every now and again, cooked fruit from frozen in home made ice cream, baked apples. I had some quinoa yesterday, and it seemed to be OK. I make bread with sorghum, potato flour and millet. I eat about 2 thin slices a day. It really lasts. And rock candy to keep the GERD down.
If something upsets me and I am not sure what I go back to potatoes mashed with stock (home made) and a bit of meat till it settles down.
That's about it. Limited, but I try to make as many variations as I can.
Susan, Nancy - I spent fortunes on acupuncture. I was dying for it to help, but it didn't.
Kaiser doesn't have an integrative physician. They are so "sub specialtied" that it's extremely constricting.
Cynthia. Whatever you have that it making you miserable is just as bad as my misery. The burning on eating seems to be unique to me.
Oh well, slog on!
I am going to bed. Night my friends, without whom I would probably be in a straight jacket by now.
Lesley,
I'm sorry that I can't be of more help and that you are still so miserable. Both my girls had problems with C, and one of them had what she thought was acid reflux and spent a fortune on all kinds of OTC and prescription meds and even had a doctor recommend surgery at one point. She found out that her actual problem was that she had too much alkaline in her system - not too much acid. She started taking 1 tsp of Bragg's apple cider vinegar a day and it stopped her problems immediately.
You may have a completely different issue, but the vinegar test is a pretty easy and inexpensive challenge. You could start with just a half tsp. first and see if you have an immediate bad reaction. From what I understand, you would feel it one way or another pretty quickly. She still takes the vinegar PRN once in awhile.
My first instinct is that you may be reacting to the oats, millet or canola oil. If you know you can tolerate coconut, I'd recommend coconut oil instead of canola when you make your granola, but I also imagine you make the granola with the oats and millet. Millet has little nutritional value, I think, I know we don't buy birdfeed with millet in it because birds can't digest it.
You seem to have lots of options that you think you can tolerate, but something in there isn't good for you, obviously. I know that taking vinegar when you feel this awful is a scary thought and it took my daughter awhile before she could screw up the courage to try it, but it worked. Do some reading about it, OK, we have talked about this here before, so there is probably a lot of info on it.
Connie
I'm sorry that I can't be of more help and that you are still so miserable. Both my girls had problems with C, and one of them had what she thought was acid reflux and spent a fortune on all kinds of OTC and prescription meds and even had a doctor recommend surgery at one point. She found out that her actual problem was that she had too much alkaline in her system - not too much acid. She started taking 1 tsp of Bragg's apple cider vinegar a day and it stopped her problems immediately.
You may have a completely different issue, but the vinegar test is a pretty easy and inexpensive challenge. You could start with just a half tsp. first and see if you have an immediate bad reaction. From what I understand, you would feel it one way or another pretty quickly. She still takes the vinegar PRN once in awhile.
My first instinct is that you may be reacting to the oats, millet or canola oil. If you know you can tolerate coconut, I'd recommend coconut oil instead of canola when you make your granola, but I also imagine you make the granola with the oats and millet. Millet has little nutritional value, I think, I know we don't buy birdfeed with millet in it because birds can't digest it.
You seem to have lots of options that you think you can tolerate, but something in there isn't good for you, obviously. I know that taking vinegar when you feel this awful is a scary thought and it took my daughter awhile before she could screw up the courage to try it, but it worked. Do some reading about it, OK, we have talked about this here before, so there is probably a lot of info on it.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Yes Tex, I am. But I added peas when I was eating only potatoes and a little meat. I had no reaction, so I eat them occasionally. I love them. )-;
I think I am going to have to go back to meat and potatoes for a little while and start over. No more of my bread for a while. I added things one by one. The D cleared up, but reversed to the other direction. The D hasn't come back, EVERYTHING I eat makes my stomach hurt as soon as I swallow it. And it hurts for the food to go down.
I tried apple cider vinegar. It's not so bad if you screw up your eyes and hold your nose. It made the GERD worse, and didn't help the C, so I didn't see the point.
Rewind, and start again.
I think I am going to have to go back to meat and potatoes for a little while and start over. No more of my bread for a while. I added things one by one. The D cleared up, but reversed to the other direction. The D hasn't come back, EVERYTHING I eat makes my stomach hurt as soon as I swallow it. And it hurts for the food to go down.
I tried apple cider vinegar. It's not so bad if you screw up your eyes and hold your nose. It made the GERD worse, and didn't help the C, so I didn't see the point.
Rewind, and start again.
Ok, Lesley, so you know I am a huge proponent of Glutamine here. I have found it to be a very soothing force when I am at my worst with this and so I did a search on Google just using GERD and L-Glutamine as my search and there is a lot of information that links the two. You can do what I just did and read more, but just in reading the first 2 links, I think this might be worth a try if you haven't tried it before. I've only used the powder form, but there are many others, including lozenges, I believe. I also have some knowledge about DGL that I remembered when reading the first article. I have a good friend/co-worker, also GF w/a myriad of health issues all her life, as does her sister - who has SEVERE GERD and cannot survive w/o DGL lozenges. Their dad was an ND, so natural was always the way they went. She had suggested awhile back that I get DGL for my DH's current bout of Diverticulitis, so I bought some of the lozenges for him. We then read that licorice was bad for people with high BP issues, so he never really took them after that. They expired in 11/11 so may not still be good, but I'd be happy to send them to you if you'd like me to. The ones I have (her rec) are by Enzymatic and I've included a link to this at the end of this message. You never know, Lesley, it might be worth a shot, and maybe better than the candy you're using now, there is fructose in them and a bunch of other stuff that you can ID from their site.
Quoting from the following link:
Supplements that can help
My first supplement recommendation for acute heartburn and ulcer symptoms is a licorice extract called DGL (deglycyrrhizinated licorice). Chewing mixes it with saliva, forming a protective coating of mucin for the lining tissues of the esophagus and stomach. Chew 1 or 2 DGL tablets before each meal, and at bedtime, or take them as needed to relieve symptoms between meals.
The next important supplement is the amino acid L-glutamine, the most abundant free amino acid in the body. This is essential for the health of the intestinal lining cells, and has been shown to help heal ulcers and other bowel inflammatory diseases. Typical doses are 1000 to 2000 mg twice a day, although sometimes higher doses are beneficial.
Glutamine acts as an anti-inflammatory, but it is also a precursor for the antioxidant glutathione. As I mentioned, antioxidants protect against free radical damage to the esophagus. Other antioxidants that might help include vitamins C and E, and bioflavonoids. N-acetyl cysteine (NAC) contributes to glutathione production and free radical control, and it can help heal ulcers. The usual dose is 500 to 1000 mg twice a day.
Additional valuable supplements include zinc, which promotes healing, and carotenoids for their antioxidant effects and benefits in healing gastric erosions. Curcumin (from turmeric) is an anti-inflammatory herb that also has excellent antioxidant properties. Typical doses are 500 mg of standardized extract, 2 to 3 times a day."
http://www.drjanson.com/djhl-html/2001/news-2001-10.htm
And lots of links and information here, Lesley: http://l-glutaminetruth.com/lglutamine-gerd-amino-acid
http://www.enzymatictherapy.com/Product ... 1-DGL.aspx
Quoting from the following link:
Supplements that can help
My first supplement recommendation for acute heartburn and ulcer symptoms is a licorice extract called DGL (deglycyrrhizinated licorice). Chewing mixes it with saliva, forming a protective coating of mucin for the lining tissues of the esophagus and stomach. Chew 1 or 2 DGL tablets before each meal, and at bedtime, or take them as needed to relieve symptoms between meals.
The next important supplement is the amino acid L-glutamine, the most abundant free amino acid in the body. This is essential for the health of the intestinal lining cells, and has been shown to help heal ulcers and other bowel inflammatory diseases. Typical doses are 1000 to 2000 mg twice a day, although sometimes higher doses are beneficial.
Glutamine acts as an anti-inflammatory, but it is also a precursor for the antioxidant glutathione. As I mentioned, antioxidants protect against free radical damage to the esophagus. Other antioxidants that might help include vitamins C and E, and bioflavonoids. N-acetyl cysteine (NAC) contributes to glutathione production and free radical control, and it can help heal ulcers. The usual dose is 500 to 1000 mg twice a day.
Additional valuable supplements include zinc, which promotes healing, and carotenoids for their antioxidant effects and benefits in healing gastric erosions. Curcumin (from turmeric) is an anti-inflammatory herb that also has excellent antioxidant properties. Typical doses are 500 mg of standardized extract, 2 to 3 times a day."
http://www.drjanson.com/djhl-html/2001/news-2001-10.htm
And lots of links and information here, Lesley: http://l-glutaminetruth.com/lglutamine-gerd-amino-acid
http://www.enzymatictherapy.com/Product ... 1-DGL.aspx
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Thanks so much Connie.
I emailed you about the L-G. I might as well give it another try. Nothing to loose.
I have high blood pressure (improving) so I can't eat licorice either. I did try. Thanks for the suggestion and the offer.
I am cutting out a lot of the sugar but chewing gum. I know, I know. It causes D, but at this point I am really desperate. I can't go on eating so much sugar, and I am sticking to chewing 2 pieces of sugar free gum per day. It keeps my saliva flowing and helps the GERD.
I'll get some more supplements as soon as I can. I prefer to order because I get it cheaper.
Curcumin is on it's way.
All I can do is try!
One day there will be new replacement parts for those that are giving us so much trouble. I want a new digestive tract.
I emailed you about the L-G. I might as well give it another try. Nothing to loose.
I have high blood pressure (improving) so I can't eat licorice either. I did try. Thanks for the suggestion and the offer.
I am cutting out a lot of the sugar but chewing gum. I know, I know. It causes D, but at this point I am really desperate. I can't go on eating so much sugar, and I am sticking to chewing 2 pieces of sugar free gum per day. It keeps my saliva flowing and helps the GERD.
I'll get some more supplements as soon as I can. I prefer to order because I get it cheaper.
Curcumin is on it's way.
All I can do is try!
One day there will be new replacement parts for those that are giving us so much trouble. I want a new digestive tract.
Lesley,
DGL is deglycyrrhizinated so that it won't harm anyone who has high blood pressure. If you google Dr. Weil I'm sure he would have an explanation. I have taken it off and on for many years. My son was here visiting and took just two (not believing) he couldn't believe how much it helped in, so we ordered some for him.
Nancy
DGL is deglycyrrhizinated so that it won't harm anyone who has high blood pressure. If you google Dr. Weil I'm sure he would have an explanation. I have taken it off and on for many years. My son was here visiting and took just two (not believing) he couldn't believe how much it helped in, so we ordered some for him.
Nancy