Hi to everyone, I have been wondering for quite a while now about this backache I have been getting. It is just the lower right side. It feels crampy, just a low dull ache. Also I know this is embarrassing to ask, but I know here that nothing is embarrassing with this illness. That is why I love this site. But here goes, when I have a BM the beginning of the stool is formed but then it starts looking non formed, soft like soft serve ice cream. Was wondering what that is all about.
Thanks all,
Deb
Backache
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Deb,
I get the impression that lower backache is pretty common with MC. Many members have mentioned it. In my case, not only did I have backaches, but I also had general body aches and pains, a stiff, sore neck, pain between my shoulders, and migraines. That doesn't even include all the pain caused by my bloated gut, which, together with the back ache, sometimes kept me from sleeping at night. The aches and pains were so bad at times, that I felt like I had a severe case of the flu.
Tex
I get the impression that lower backache is pretty common with MC. Many members have mentioned it. In my case, not only did I have backaches, but I also had general body aches and pains, a stiff, sore neck, pain between my shoulders, and migraines. That doesn't even include all the pain caused by my bloated gut, which, together with the back ache, sometimes kept me from sleeping at night. The aches and pains were so bad at times, that I felt like I had a severe case of the flu.
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.
Come to think of it, I had a pretty consistent history of backache that I haven't had for a long, long time. Add that to the list of improvements! Ha!
Your description of the stool progression is perfect. I'm sure that at one time I could make formed stools before the strict elimination of antigen foods, but since it went on for so many, many years prior, eventually I got to the point that I never had anything but multiple liquid stools each time I visited the bathroom. Hopefully, that means you don't have as much damage at this point, but we've found there's no rhyme or reason to this stuff.
Anyway, once I was started eliminating things, I eventually worked my way back to what you described on the road to the big, normal stools without ANY liquid or soft serve. That's an exciting process, believe it or not. I remember how we used to report in descriptions of our latest potty improvement and elicit all kinds of hoots and hollers from our online group at that time. I never had so much fun getting well in my life, come to think of it! Ha! Very few people I could report that to, that's for sure!!!
Where are you now in terms of trying to treat your M.C.?
Yours, Luce
Your description of the stool progression is perfect. I'm sure that at one time I could make formed stools before the strict elimination of antigen foods, but since it went on for so many, many years prior, eventually I got to the point that I never had anything but multiple liquid stools each time I visited the bathroom. Hopefully, that means you don't have as much damage at this point, but we've found there's no rhyme or reason to this stuff.
Anyway, once I was started eliminating things, I eventually worked my way back to what you described on the road to the big, normal stools without ANY liquid or soft serve. That's an exciting process, believe it or not. I remember how we used to report in descriptions of our latest potty improvement and elicit all kinds of hoots and hollers from our online group at that time. I never had so much fun getting well in my life, come to think of it! Ha! Very few people I could report that to, that's for sure!!!
Where are you now in terms of trying to treat your M.C.?
Yours, Luce
Im taking Asacol 2 tabs two times daily and Colestid for the diarrhea. I have come to the conclusion that I will never have normal stools again. they mostly all look like soft serve ice cream!!! Probably why I dont eat ice cream any more 
That could be a good thing ha?? Thanks for the info. What meds are you all on.
That could be a good thing ha?? Thanks for the info. What meds are you all on.LC diagnosed 10/06
Vitamin B12 deficient
Vitamin B12 deficient
Deb,
I forgot to address the stool texture/consistency that you asked about. I have a hunch that what you described is probably somewhat typical for treatment with Asacol, from what I have read here. Entocort may be more likely to yield better formed stools, but I don't believe that everyone has the same results, for that matter. As someone pointed out recently, the doctors define diarrhea, not so much by texture/consistency, as by frequency, and urgency.
Many of us use diet alone, (I believe that applies to Luce, and I know it applies to me), which works quite well, provided that all intolerances are removed from the diet.
Tex
I forgot to address the stool texture/consistency that you asked about. I have a hunch that what you described is probably somewhat typical for treatment with Asacol, from what I have read here. Entocort may be more likely to yield better formed stools, but I don't believe that everyone has the same results, for that matter. As someone pointed out recently, the doctors define diarrhea, not so much by texture/consistency, as by frequency, and urgency.
Many of us use diet alone, (I believe that applies to Luce, and I know it applies to me), which works quite well, provided that all intolerances are removed from the diet.
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.
Hi Debra,
I never really was on any meds, although my GI had sent me home with Colazol, which is in the same family as Asacol. I read the thing about headaches as being common with that medication, and since my headaches were soooo constant by that point in time, I just elected not to continue them.
I have never been back to the G.I. since my diagnosis of M.C., so even he does not know my story of how I got well.
Anyway, I did take a peak at a precursor website to this one shortly after that diagnosis, and read there a while, and even saw something once in a while about some of the people being on the GF diet, but somehow, I just hadn't realized how many of them were on it.
I'm not sure why I couldn't seem to wrap my mind around it all at that time, but I do know that there was alot of friendly chatter among the old timers there that I didn't see how could have anything to do with me. That was in late 2002, when I had the colonoscopy and biopsy. For whatever reason, I never did join that site right at first, and eventually, quit lerking there.
Just prior to the M.C. diagnosis, I'd had a tumor removed from my lower left leg in April of 2002, and then, a complete thyroidectomy that Sept. of 2002, but things still got worse -- I knew it wasn't JUST a thyroid problem as I did well in getting my thyroid levels where they needed to be.
During the next year, I continued to have even worsening diarrhea along with many symptoms far worse than the diarrhea. Also, now I could hardly walk with swelling in my feet to the point that I couldn't put my slippers on first thing in the morning, and my feet were very unstable. I had weight loss occurring where my condition had previously caused me to gain weight.
One day I just sort of realized that I could no longer stand the way I felt, and that the current program of doing nothing wasn't working. so I was going to make a change or get help from somewhere.
Of course, I had no idea where to turn at that point, so, at the end of my rope, I just said to God, "I can't do this, so You are going to have to do it for me or let me know what I need to do" and it wasn't long before I remembered
that old message board, joined it immediately, and got all kinds of help and support from many people there.
I do have a scientific background, so when I read various explanations for our illness, it all began to fall into place, and I could understand why I needed to begin the gluten free diet just as if I had been diagnosed a celiac.
I suppose it was on the old board, where I first learned about all the celiac sites available that give such good information that helped me learn how to navigate the shark infested waters of the glutenized food world. I took on the diet as a challenge, and it actually became fun after a while (particularly when things quit hurting!!), as I became much more creative with the ingredients I could have. I ended up eating healthier as a result, particularly when I quit trying to try all the gluten free junk food I saw advertised, and just eat meat, vegetables, and potatoes or rice.
I would be glad to tell you what I found that worked really well in helping me avoid getting any gluten, if you are ready for that. I think it would be a little less costly than trying to stock up on alot of advertised GF products, at least in the beginning.
I started the gf diet right after Thanksgiving of 2003, fine tuned my diet a bit for a few months after that, and since that time, I've been free of the awful symptoms I'd had, and regularly have large, formed, normal BM's without taking any medications other than to replace the hormones I no longer have the organs to produce.
I forgot, have you had any testing, other than the colonoscopy with biopsies?
Do you notice much fat in your stools (stools float, slimmy in the commode and odor is horrendous!). Even though you may not have noticed this, it doesn't mean that loss of fat in the stool isn't a problem for you.
At any rate, you could be losing both fat soluble AND water soluble vitamins, so I would work with a physician on seeing how badly I was malabsorbing nutrients, particularly while the diarrhea is still active, and supplment accordingly. I had to take B-12 sublingual tablets to keep my level above 400, at the very least. Mine is actually more in the middle of the reference range with supplementation.
It's very risky to have a low B-12 level. Despite the lower end of the reference range usually stating 200, people are known to have neurological symptoms below 400 -- thus the need to keep your level above 400 at the very least.
I can recommend a brand name if you want one. Also, it's possible for neurological damage to be permanent if you wait to long to address it.
I don't know your age, but regardless, you should have a bone density to make sure you are not having too much bone loss. Osteporosis is VERY common among people with malabsorption due to our nutrient loss, so you'll want to aggressively treat that, as well as stop the malabsorption by treating the gut condition faithfully.
Have you read Dr. Fine's article that has the words "before the villi are gone" in the title yet? It's lengthy, but it explains why the gf diet works for so many of us with M.C.
Do you happen to have any type of anemia? That is more common in people with diagnosed celiac disease as compared to M.C., but just would like to know.
Well, I hope I've not thrown in too much for one post. Anyway, I was hoping that you'd be encouraged by my personal story.
By the way, have you read the very first information in the website, authored by Polly? If not, I suggest you go back and read that very carefully.
In terms of medication, of all the medications, it seems that Entecort, among those who go that route, even in addition to diet, seems to be the most helpful in reducing the GI symptoms. I never needed it, thankfully.
At least it's possible for most people to maintain on a very low dose of it.
Often times, people use it for relief until they've learned a bit more of where all the hidden gluten is located -- it's a very steep learning curve, so I guess it's nice to get some relief while one is learning.
To know if the diet has begun to help, one will have to be weaned off the Entecort, to detect how much the diarrhea has fled the scene without the masking of the med. Usually, if there is still diarrhea on the diet without the Entecort, then it's one or the other of the following, either one is still getting gluten, one has one or more other food sensitivities, or else it's a combination of both. It's mostly the fatigue part that seems to take forever, but it does slowly get better til it's resolved.
It's possible to have other conditions in addition to the M.C. which require medical attention, but often, these will resolve once gluten free.
Let us know if you have any other questions, particularly after you read Dr. Fine's article about the villi.
Yours, Luce
I never really was on any meds, although my GI had sent me home with Colazol, which is in the same family as Asacol. I read the thing about headaches as being common with that medication, and since my headaches were soooo constant by that point in time, I just elected not to continue them.
I have never been back to the G.I. since my diagnosis of M.C., so even he does not know my story of how I got well.
Anyway, I did take a peak at a precursor website to this one shortly after that diagnosis, and read there a while, and even saw something once in a while about some of the people being on the GF diet, but somehow, I just hadn't realized how many of them were on it.
I'm not sure why I couldn't seem to wrap my mind around it all at that time, but I do know that there was alot of friendly chatter among the old timers there that I didn't see how could have anything to do with me. That was in late 2002, when I had the colonoscopy and biopsy. For whatever reason, I never did join that site right at first, and eventually, quit lerking there.
Just prior to the M.C. diagnosis, I'd had a tumor removed from my lower left leg in April of 2002, and then, a complete thyroidectomy that Sept. of 2002, but things still got worse -- I knew it wasn't JUST a thyroid problem as I did well in getting my thyroid levels where they needed to be.
During the next year, I continued to have even worsening diarrhea along with many symptoms far worse than the diarrhea. Also, now I could hardly walk with swelling in my feet to the point that I couldn't put my slippers on first thing in the morning, and my feet were very unstable. I had weight loss occurring where my condition had previously caused me to gain weight.
One day I just sort of realized that I could no longer stand the way I felt, and that the current program of doing nothing wasn't working. so I was going to make a change or get help from somewhere.
Of course, I had no idea where to turn at that point, so, at the end of my rope, I just said to God, "I can't do this, so You are going to have to do it for me or let me know what I need to do" and it wasn't long before I remembered
that old message board, joined it immediately, and got all kinds of help and support from many people there.
I do have a scientific background, so when I read various explanations for our illness, it all began to fall into place, and I could understand why I needed to begin the gluten free diet just as if I had been diagnosed a celiac.
I suppose it was on the old board, where I first learned about all the celiac sites available that give such good information that helped me learn how to navigate the shark infested waters of the glutenized food world. I took on the diet as a challenge, and it actually became fun after a while (particularly when things quit hurting!!), as I became much more creative with the ingredients I could have. I ended up eating healthier as a result, particularly when I quit trying to try all the gluten free junk food I saw advertised, and just eat meat, vegetables, and potatoes or rice.
I would be glad to tell you what I found that worked really well in helping me avoid getting any gluten, if you are ready for that. I think it would be a little less costly than trying to stock up on alot of advertised GF products, at least in the beginning.
I started the gf diet right after Thanksgiving of 2003, fine tuned my diet a bit for a few months after that, and since that time, I've been free of the awful symptoms I'd had, and regularly have large, formed, normal BM's without taking any medications other than to replace the hormones I no longer have the organs to produce.
I forgot, have you had any testing, other than the colonoscopy with biopsies?
Do you notice much fat in your stools (stools float, slimmy in the commode and odor is horrendous!). Even though you may not have noticed this, it doesn't mean that loss of fat in the stool isn't a problem for you.
At any rate, you could be losing both fat soluble AND water soluble vitamins, so I would work with a physician on seeing how badly I was malabsorbing nutrients, particularly while the diarrhea is still active, and supplment accordingly. I had to take B-12 sublingual tablets to keep my level above 400, at the very least. Mine is actually more in the middle of the reference range with supplementation.
It's very risky to have a low B-12 level. Despite the lower end of the reference range usually stating 200, people are known to have neurological symptoms below 400 -- thus the need to keep your level above 400 at the very least.
I can recommend a brand name if you want one. Also, it's possible for neurological damage to be permanent if you wait to long to address it.
I don't know your age, but regardless, you should have a bone density to make sure you are not having too much bone loss. Osteporosis is VERY common among people with malabsorption due to our nutrient loss, so you'll want to aggressively treat that, as well as stop the malabsorption by treating the gut condition faithfully.
Have you read Dr. Fine's article that has the words "before the villi are gone" in the title yet? It's lengthy, but it explains why the gf diet works for so many of us with M.C.
Do you happen to have any type of anemia? That is more common in people with diagnosed celiac disease as compared to M.C., but just would like to know.
Well, I hope I've not thrown in too much for one post. Anyway, I was hoping that you'd be encouraged by my personal story.
By the way, have you read the very first information in the website, authored by Polly? If not, I suggest you go back and read that very carefully.
In terms of medication, of all the medications, it seems that Entecort, among those who go that route, even in addition to diet, seems to be the most helpful in reducing the GI symptoms. I never needed it, thankfully.
At least it's possible for most people to maintain on a very low dose of it.
Often times, people use it for relief until they've learned a bit more of where all the hidden gluten is located -- it's a very steep learning curve, so I guess it's nice to get some relief while one is learning.
To know if the diet has begun to help, one will have to be weaned off the Entecort, to detect how much the diarrhea has fled the scene without the masking of the med. Usually, if there is still diarrhea on the diet without the Entecort, then it's one or the other of the following, either one is still getting gluten, one has one or more other food sensitivities, or else it's a combination of both. It's mostly the fatigue part that seems to take forever, but it does slowly get better til it's resolved.
It's possible to have other conditions in addition to the M.C. which require medical attention, but often, these will resolve once gluten free.
Let us know if you have any other questions, particularly after you read Dr. Fine's article about the villi.
Yours, Luce
Dear Luce, your story is amazing. thank you for sharing. Its funny that you mention the vitamin deficiency because I had very low B12. it was 170. I started having very bad neurological symptoms. My muscles started twitching uncontrollably. I have to go for B12 injections once a month. The twitching is alot better but the damage was irreversible. Had memory problems, etc. Was awful. I wasnt able to keep any food in without immediately having diarrhea with abdominal pain after eating. Sometimes I wouldnt even be done eating before I was running to the bathroom. Worse experience of my life. Was starting to effect me psychologically. I was to the point I was afraid to eat. So now with the Colestid, Im afraid to go off of it. I would love info on GF. I did try it for a while but it didnt seem to matter. I was spending too much money like you said buying the products that specifically said GF. Like I said my stools are still really soft like soft serve ice cream, but as long as its not the running to the restroom after eating hunched over with pain, I will tolerate this.
Deb
Deb
LC diagnosed 10/06
Vitamin B12 deficient
Vitamin B12 deficient
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
Hi deb,
Just wanted to mention that I agree about the g.f. products. Most of them actually made me worse. You will find that a lot of them contain casein such as dry milk powder (that always sets me off). Also, I am convinced that too much guar gum or xantham gum makes me loose as well. I have a loaf of gluten free bread in my freezer (dairy, soy, & casein free) that I use sparingly, otherwise I just use white corn tortillas for my bread. I appreciate manufacturers making gluten free food for us though but it sure comes with a price tag!
Just wanted to mention that I agree about the g.f. products. Most of them actually made me worse. You will find that a lot of them contain casein such as dry milk powder (that always sets me off). Also, I am convinced that too much guar gum or xantham gum makes me loose as well. I have a loaf of gluten free bread in my freezer (dairy, soy, & casein free) that I use sparingly, otherwise I just use white corn tortillas for my bread. I appreciate manufacturers making gluten free food for us though but it sure comes with a price tag!
Kathy