Bit my tongue and was pleasant today and got my entocort RX refilled. I so much want to talke to someone in the medical community that has an interest in me. sigh. The NP didn't even bat an eye when I responded to her question that I still feel fatigued and often sick to my stomach and have D. She simply said colitis is hard to control and advised me to bump up the dose to 6mg and that might help. When I asked about the long term use of entocort she said not to worry since it's much better than prednisone if I can afford it. (She's not the one living with the side-effects & long term health effects). She did give me samples of Align to take however the "milk protien" in the ingredient list makes me nervous. I don't think anyone there actually read the enterolab results, although I'm thankful they wrote a RX for me so it was covered under insurance.
Thanks for listening, I'm just venting because I know I still need their help even if they don't understand yet. Part of me wants to strangle them all and the other part knows they think they're doing everything they can for me.
Is there a safe way to give up all food for a while? Many of my unpleasant symptoms have returned after being GF/DF for almost a year now along with being SF/EF for about 9 months. Right now it would almost seem easier to stop eating all together and then start by reintroducing one food at a time. I know I can't just not eat but all my safe foods right now are questionable and it seems like it would be harder to just pick one to eliminate and see if it helps because maybe there are multiples. I'd be willing to try some sort of liquid diet just for nutrients but don't know if that exists.
Checked In With My GI
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I know how you feel. I had to bite my tongue 2 weeks ago when I had my GI follow-up and I'm surprised I was able to keep my cool as he had totally overlooked my small biopsy results that indicated full blown Celiac. Yes, it would be nice to talk to a medical professional who would actually listen and show some empathy. I thank God every day for this forum, otherwise, I wouldn't know what to do. Do you think the Entocort is causing some of your symptoms as a side effect. I haven't ever taken Entocort so I'm not sure what effects you can get from it. And, wow, you've given up so much already. I see you had the Enterolabs done and have probably given up whatever tolerances due to their results. Just the Big 4?
I have heard that lots of people have resorted to just bone broth for a while. Very high in nutrients. Then adding one thing in at a time. SCD diet does this but I won't follow their program personally cause if I lose anymore weight I'll be in the hospital. And if you aren't that hungry, the bone broth may just be what you need right now. I'm starving all day and I'm eating a lot.....go figure. It's a shame that it can take so long for our guts to heal.
As for the Align, I personally would be scared to take it due to the milk content. And it probably takes a while for probiotics to even work if they do at all. My GYN wanted me on Provella probiotics but they have some kind of dairy in it so I probably won't take that. Culturelle is DF and GF but I'm sure you knew that already. It would be nice (since your doctor wants you on that certain strain...whatever is in Align) if you could find the same strain in a brand that was GF and DF. I suppose it wouldn't hurt to try the Align and see how it goes. I'm assuming you would know pretty quick if it was making you worse.
Good luck!
Vent as much as you want!
Terri
I have heard that lots of people have resorted to just bone broth for a while. Very high in nutrients. Then adding one thing in at a time. SCD diet does this but I won't follow their program personally cause if I lose anymore weight I'll be in the hospital. And if you aren't that hungry, the bone broth may just be what you need right now. I'm starving all day and I'm eating a lot.....go figure. It's a shame that it can take so long for our guts to heal.
As for the Align, I personally would be scared to take it due to the milk content. And it probably takes a while for probiotics to even work if they do at all. My GYN wanted me on Provella probiotics but they have some kind of dairy in it so I probably won't take that. Culturelle is DF and GF but I'm sure you knew that already. It would be nice (since your doctor wants you on that certain strain...whatever is in Align) if you could find the same strain in a brand that was GF and DF. I suppose it wouldn't hurt to try the Align and see how it goes. I'm assuming you would know pretty quick if it was making you worse.
Good luck!
Vent as much as you want!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
IMO, that statement pretty much says it all about the tenuous relationship that so many of us have with our doctors. You have hit the nail right square on the head. LOL.DebE wrote:I know I still need their help even if they don't understand yet. Part of me wants to strangle them all and the other part knows they think they're doing everything they can for me.
And your phrase, "even if they don't understand yet", is very insightful. I agree with you that someday they will probably understand this disease, and in the meantime, we have to do the best we can with what's available to us, despite the inadequacies of the system.
And kudos to you for treating them so nicely.
One time, over 12 years ago, when I was between tests, I lived on plain jello, 7-up, Sprite, and water for 2 weeks. About half-way through the session, I developed frequently-recurring hiccups that were very difficult to stop, and by the end of the 2 weeks, I was down to hide and bones. I couldn't even sit in a bathtub comfortably, or on a hard chair, because of my bones applying so much painful pressure to the skin of my butt, after all the padding disappeared.DebE wrote:Is there a safe way to give up all food for a while?
I don't recommend it.
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.
Have you tried antihistamines yet? I really resisted trying them, and now I regret not getting on them sooner. After a week on Claritin Readitabs, my MC symptoms were no longer noticeable. I am in awe and take my Claritin religiously now! The only "breakthrough D" I had in the last month was after a restaurant meal where I had some accidental dairy and 2 martinis!!
Terri, I am usually very hungry so it makes it a bit more difficult. I've been using broth a lot lately since the weather has gotten colder- it has a way of making me feel full and content. I have to be careful not to overeat as that seems to cause problems. I experimented with the Betaine Hydrochloride and I didn't notice much of a result one way or another. I stopped using it for a while after some extreme nausea. I don't think it caused it but I have a questionable association with it now so I'm not as excited to experiment with it right now. I'll still use a tablet or two if I eat a meal with meat cause I don't want it to just sit on the shelf. I don't know if that's a good philosophy or not. I'm at a loss for what causes my problems and how much is related to entocort. I was taking prednisone before this and the problems were much worse. I have problems with fatigue, eye pain, sex drive (very hard on the marriage), memory/fuzziness problems, nausea, sinus/histamine issues, runny nose w/out being sick, headache, sleeping through the night, leg/foot cramps, and the list goes on. Some of these problems improved but recently have come back with a vengance. I'm hoping it means I've done lots of healing over the past 9-11 months and now I need to fine tune what I'm eating but I'm also skeptical that I'm just going to be stuck at feeling 60% of good health for the rest of my life. Since there's no hope at all if I choose option #2, I have to keep going with the food issues. The D seems to be the least of my problems, although it limits my life tremendously. I would be willing to live with the D (3-4 times/day mostly in the AM with almost Normans showing up occassionally) if I could shake the fatigue and eye pain. I've tried probiotics before and did not find any relief. However, I still had soy and eggs in my diet so I'm not surprised. At the time I was paying $50/bottle from my Functional Medicine Doc. I will not be satisfied until I can control the MC beast through diet alone, although am starting accept the idea that I may need meds for life. I don't believe I'll ever stop trying because I just don't feel I have a choice, it's just very difficult to dedicate so much of my life to my diet- I feel I'm missing out on so much. I know everyone here has had that feeling so it's nice to feel sorry for myself to those who know.
Tex, I will have to just pick something to give up and see if it helps. I was hoping something like pedialite (if that's how it's spelled) would be sustaining short-term. I tried strict Paleo for 3 weeks and didn't notice a change at all eliminating the grains. Oddly, it was shortly after that try that some of my other past issues returned. After that I was frustrated, ate chococlate chip pumpkin bread and a piece of birthday cake the next day. Not the brightest thing I've done but it was a good reminder that as bad as I feel, I can be worse. I didn't notice much change in consistency but did notice I was awakened in the morning by the need to "go." Previously, I've had night D issues and that is plain scary and humiliating. It also compounded the fatigue and achiness I already had. I already gave up corn and rice for 3 weeks and didn't notice any improvements (maybe that's not long enough?) so the next might be turkey,pork, or beef and almond products which are a staple of my diet.
Zizzle, I've been taking either Allegra or Zyrtec almost daily. I have to search this site a bit more about dosage since I'm only taking one each morning. I don't notice anything as far as the D goes and barely notice any relief with my sinuses. My seasonal allergies have gotton worse over the past few years but now eveything is frozen outside so I shouldn't feel as stuffy as I do. I can breath just fine through my nose but my whole head doesn't feel right. I'm using Restasis now and it hasn't done a thing- the eye pain is still my worst problem. Histame seems to help a bit but it's expensive. Maybe I should give Claritin a try- how much do you use?
Tex, I will have to just pick something to give up and see if it helps. I was hoping something like pedialite (if that's how it's spelled) would be sustaining short-term. I tried strict Paleo for 3 weeks and didn't notice a change at all eliminating the grains. Oddly, it was shortly after that try that some of my other past issues returned. After that I was frustrated, ate chococlate chip pumpkin bread and a piece of birthday cake the next day. Not the brightest thing I've done but it was a good reminder that as bad as I feel, I can be worse. I didn't notice much change in consistency but did notice I was awakened in the morning by the need to "go." Previously, I've had night D issues and that is plain scary and humiliating. It also compounded the fatigue and achiness I already had. I already gave up corn and rice for 3 weeks and didn't notice any improvements (maybe that's not long enough?) so the next might be turkey,pork, or beef and almond products which are a staple of my diet.
Zizzle, I've been taking either Allegra or Zyrtec almost daily. I have to search this site a bit more about dosage since I'm only taking one each morning. I don't notice anything as far as the D goes and barely notice any relief with my sinuses. My seasonal allergies have gotton worse over the past few years but now eveything is frozen outside so I shouldn't feel as stuffy as I do. I can breath just fine through my nose but my whole head doesn't feel right. I'm using Restasis now and it hasn't done a thing- the eye pain is still my worst problem. Histame seems to help a bit but it's expensive. Maybe I should give Claritin a try- how much do you use?
Hi DebE,
You probably did the right thing by discontinuing the use of the Betaine Hcl. If I recall correctly, excess stomach acid can cause nausea (it's a symptom of gastritis).
I looked at your list of symptoms again, and while most of those can be attributed to MC, one (sex drive) stands out as incongruent. I'll grant you that frequent WD is not exactly beneficial for a normal sex life, but it shouldn't affect one's libido (unless certain hormones are affected, as a secondary effect from the disease). Many of those symptoms (especially the unrelenting fatigue) are associated with hypothyroidism (and interestingly, so is libido). I recall that your thyroid function has been tested (somewhat recently) and proclaimed to be normal, but if I were a doctor, and you were my patient, I would consider suggesting that you try a beginning dose of thyroid supplement, to see if it might have a beneficial effect. (Since I'm not a doctor, obviously I'm not suggesting it. This is for informational purposes, only.)
Note that this isn't a clear cut mandate, because hypothyroidism is associated with C, not D. However, as we all know, MC tends to trump everything else, when it comes to BM patterns. On the average, according to our poll, someone who has MC is approximately 7 times as likely as someone in the general population, to have thyroid problems — that's an increased probability of 700%.
I can offer a perspective from my own experience. MC did a number on my hormones, presumably because it remained untreated for so many years. As a result, (and a natural result of ageing), my testosterone production is low (I believe that's a very common problem with males who have this disease). So I wear an Androderm patch, because low T tends to be associated with metabolic syndrome, obesity, increased risk of heart attack, stroke, etc.
This past summer, I experimented with my thyroid dosage (for an unrelated reason). After a couple of months at an increased dose, I happened to notice that my libido had increased significantly. Not only that, but at the higher thyroid hormone dose, it didn't seem to matter if I wore an Androderm patch or not.
The thyroid hormone seemed to have a greater effect on libido than the T supplement. This leads me to suspect that my T deficiency might be due to undertreated hypothyroidism, but I'm only guessing here. It is known that thyroid problems can adversely affect many hormones, especially sex hormones.
Three weeks should be long enough to notice an effect from removing grains from the diet. The only antigen that might not show a response within 3 weeks would be gluten. The half-life of most food antibodies is about 5 or 6 days, so they decay fairly rapidly. On the other hand, the half-life of anti-gliadin antibodies is 120 days.
Tex
You probably did the right thing by discontinuing the use of the Betaine Hcl. If I recall correctly, excess stomach acid can cause nausea (it's a symptom of gastritis).
I looked at your list of symptoms again, and while most of those can be attributed to MC, one (sex drive) stands out as incongruent. I'll grant you that frequent WD is not exactly beneficial for a normal sex life, but it shouldn't affect one's libido (unless certain hormones are affected, as a secondary effect from the disease). Many of those symptoms (especially the unrelenting fatigue) are associated with hypothyroidism (and interestingly, so is libido). I recall that your thyroid function has been tested (somewhat recently) and proclaimed to be normal, but if I were a doctor, and you were my patient, I would consider suggesting that you try a beginning dose of thyroid supplement, to see if it might have a beneficial effect. (Since I'm not a doctor, obviously I'm not suggesting it. This is for informational purposes, only.)
Note that this isn't a clear cut mandate, because hypothyroidism is associated with C, not D. However, as we all know, MC tends to trump everything else, when it comes to BM patterns. On the average, according to our poll, someone who has MC is approximately 7 times as likely as someone in the general population, to have thyroid problems — that's an increased probability of 700%.
I can offer a perspective from my own experience. MC did a number on my hormones, presumably because it remained untreated for so many years. As a result, (and a natural result of ageing), my testosterone production is low (I believe that's a very common problem with males who have this disease). So I wear an Androderm patch, because low T tends to be associated with metabolic syndrome, obesity, increased risk of heart attack, stroke, etc.
This past summer, I experimented with my thyroid dosage (for an unrelated reason). After a couple of months at an increased dose, I happened to notice that my libido had increased significantly. Not only that, but at the higher thyroid hormone dose, it didn't seem to matter if I wore an Androderm patch or not.
The thyroid hormone seemed to have a greater effect on libido than the T supplement. This leads me to suspect that my T deficiency might be due to undertreated hypothyroidism, but I'm only guessing here. It is known that thyroid problems can adversely affect many hormones, especially sex hormones.Three weeks should be long enough to notice an effect from removing grains from the diet. The only antigen that might not show a response within 3 weeks would be gluten. The half-life of most food antibodies is about 5 or 6 days, so they decay fairly rapidly. On the other hand, the half-life of anti-gliadin antibodies is 120 days.
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.
Deb, I completely understand the desire to have no food hit my colon for a while! The fatigue and stomach aches are horrible!
I started taking VSL #3 about a month ago and it seems to be a good probiotic for me (I am assuming that is what Align is?). They say it is a non dairy probiotic (not specifically dairy free) I get mine at Costco (insurance wouldn't cover), but if insurance is covering the Align for you it may cover the VSL #3 DS (double strength). You can take half (the script gives you two packets a day) and it would last you two months. The CFU content is high-900 billion for the DS. I got up to that count slowly and had mild stomach pain the first two days after I started each increased dose (I read that this means there is more bad bacteria)
I also take Zyrtec and Histame. They both help some.
I have an appointment to see Dr. Elizabeth Boham in April (have to fly out to Massachusetts), and I am hoping she will be one to really listen. She is a functional medicine doc who specializes in food. I know the functional medicine docs recognize the role food plays in disease, so I am hoping for a little help and understanding! Unfortunately I will have to pay up front and be reimbursed!
Feeling frustrated too! Susie
I started taking VSL #3 about a month ago and it seems to be a good probiotic for me (I am assuming that is what Align is?). They say it is a non dairy probiotic (not specifically dairy free) I get mine at Costco (insurance wouldn't cover), but if insurance is covering the Align for you it may cover the VSL #3 DS (double strength). You can take half (the script gives you two packets a day) and it would last you two months. The CFU content is high-900 billion for the DS. I got up to that count slowly and had mild stomach pain the first two days after I started each increased dose (I read that this means there is more bad bacteria)
I also take Zyrtec and Histame. They both help some.
I have an appointment to see Dr. Elizabeth Boham in April (have to fly out to Massachusetts), and I am hoping she will be one to really listen. She is a functional medicine doc who specializes in food. I know the functional medicine docs recognize the role food plays in disease, so I am hoping for a little help and understanding! Unfortunately I will have to pay up front and be reimbursed!
Feeling frustrated too! Susie
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Christine.
- Gentoo Penguin
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Zizzie - Is Claratin the best antihistamine to try, or Zantac? Are they long-term wonder drugs? I have such crummy seasonal allergies right now and we leave for South America (chile and Argentina)on Thursday. I am apprehensive and have lots of food for my suitcase. I also have Cipro in case of traveler's D and plenty of Immodium. My gut is quiet and I'm hoping to keep it that way. Any thoughts?
Christine
Christine
Deb - who is your health care provider? I am going to change and would go with ANYONE that would pay for enterolab testing. I want to do it again to see if anything has changed.
I feel your pain - I have many of the same issues, and nothing seems to help. I might eat potatoes mashed in bone stock for a while and add in foods to that.
I feel your pain - I have many of the same issues, and nothing seems to help. I might eat potatoes mashed in bone stock for a while and add in foods to that.
DebE, I am so sorry to hear of all you've been dealing with. Hugs and prayers for you! I posted a link about meat digesting a few days ago. http://roarofwolverine.com/archives/412 I don't think I'd worry about that. I seem to need (and handle well) a lot of meat during a flare but it may be beneficial to discern which are best for you. I sure hope you can get things figured out. Deb
Hi Deb,
I understand where you are at. Four weeks ago when the flare started in the middle of the night for a couple of weeks I was very upset. How could this happen being GF/DF for 11 months? I am looking forward to getting my Enterolab test results. I was also considering a liquid diet. How much can a body take? I can not lose anymore weight. It is very frustrating after so much hard work.
I hope you feel better soon!
My husband told me today he wants to follow the same diet because he feels bad. He can not last one day! maybe two!
I understand where you are at. Four weeks ago when the flare started in the middle of the night for a couple of weeks I was very upset. How could this happen being GF/DF for 11 months? I am looking forward to getting my Enterolab test results. I was also considering a liquid diet. How much can a body take? I can not lose anymore weight. It is very frustrating after so much hard work.
I hope you feel better soon!
My husband told me today he wants to follow the same diet because he feels bad. He can not last one day! maybe two!
Denise
Thanks everybody for all of your comments, it's nice to know that I have lots of shoulders to lean on. I'm happy to have suggestions for probiotics. I've taken them before but am considering giving them another try.
Tex- Thanks for sharing your experience, it's hard enough trying to figure out MC issues and to add no libedo to the mix is almost too much. I no longer have a family doctor at the moment since mine moved on to a different position. Now may be the time to start interviewing a new doc who would be willing to explore the thryroid issue again. You're right, it wasn't too long ago I had mine tested and "they" were satisfied.
Leslie- I see Dr. Schlaiss in Wausau, WI. I don't believe he would approve anyone else for enterolab testing as we never even discussed the results when they came back. Food is not a topic that they are receptive to considering. The only reason, I believe, he allowed it for me is that I was a patient that came with a ton of issues and doctors that refused to see me anymore. I am thankful that he agreed to even see me. I originally asked for the full enterolab tests but he would only approve the basics which was better than nothing. At least it's been one test covered by insurance that actually helped me.
Deb- I missed the post earlier- thanks, it was an interesting article.
Work is sending me to school today out of town, I've spent so much time preparing for the trip that I'm ready to go back to bed! I'm on such a schedule that I'm a bit thrown by the fact I need to use the bathroom at least four times within the next 45 minutes in order to feel safe leaving the house! That seems to be a standard for me but I usually have over two hours in the morning after I wake up to get myself ready for the day. Sometime what seems simple is so complicated when MC is added to the situation. I just keep telling myself if others of you here travel regularly, so can I!
Tex- Thanks for sharing your experience, it's hard enough trying to figure out MC issues and to add no libedo to the mix is almost too much. I no longer have a family doctor at the moment since mine moved on to a different position. Now may be the time to start interviewing a new doc who would be willing to explore the thryroid issue again. You're right, it wasn't too long ago I had mine tested and "they" were satisfied.
Leslie- I see Dr. Schlaiss in Wausau, WI. I don't believe he would approve anyone else for enterolab testing as we never even discussed the results when they came back. Food is not a topic that they are receptive to considering. The only reason, I believe, he allowed it for me is that I was a patient that came with a ton of issues and doctors that refused to see me anymore. I am thankful that he agreed to even see me. I originally asked for the full enterolab tests but he would only approve the basics which was better than nothing. At least it's been one test covered by insurance that actually helped me.
Deb- I missed the post earlier- thanks, it was an interesting article.
Work is sending me to school today out of town, I've spent so much time preparing for the trip that I'm ready to go back to bed! I'm on such a schedule that I'm a bit thrown by the fact I need to use the bathroom at least four times within the next 45 minutes in order to feel safe leaving the house! That seems to be a standard for me but I usually have over two hours in the morning after I wake up to get myself ready for the day. Sometime what seems simple is so complicated when MC is added to the situation. I just keep telling myself if others of you here travel regularly, so can I!