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03-23-2012, 04:42 PM   #91
David
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Hi Jackie,

Wow, below 100 is dangerously low. You poor thing. I've read that microscopic colitis can indeed cause low B12 levels. My guess is it's due to the chronic diarrhea messing up the enterohepatic circulation system (that's what deals properly with bile salts and keeps B12 in the system). How often are you taking the B12 injections, monthly? If you were at 200 last checkup and it has been 6 months, I'd strongly suggest getting your levels checked soon so you can find out if your current dosage is sufficient as brain fog and fatigue can be caused by B12 deficiency.

With levels that low though I'd be curious if they'd be interesting in testing to make sure you are producing sufficient levels of intrinsic factor. That's what is needed for B12 to be properly absorbed. Most (non-elderly) people with pernicious anemia who don't have IBD have issues with intrinsic factor.
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03-23-2012, 04:49 PM   #92
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I started off with weekly b12, then moved to monthly after 6 or 8 weeks. Not sure they ever checked for intrinsic factor. I was seeing a neurologist for unexplained hearing loss and he ordered a bunch of blood work. When he saw the b12 levels he sent me back to my gp to get the b12. My GI does know what the levels were, and also about the vitamin d. They aren't too worried about the vitamin d, seems like most people around here are deficient this time of year! The neurologist asked me if I was a vegetarian, and I wasn't at the time and hadn't been in years, and if I had any type of weight loss surgery, and I haven't. He did ask about any diagnosis of chron's, or anything having to do with the intestine, but at the time I had been assured by a previous GI that I didn't have anything wrong with me so I said no. Seems like some things are starting to add up.
03-23-2012, 07:03 PM   #93
Beach
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Microscopic colitis is the first diagnosis I received when i began seeing the GI specialists in the early 90s. Later on other doctors mentioned celiac even though all tests came back negative. (I would mention on wheat elimination trials that I felt better avoiding wheat. Today i realize I have wheat sensitivity.) And then later the head GI specialist at the local hospital mentioned that since I was not an older lady, and M.C. was mainly a condition older ladies develop, he was giving me a diagnosis of IBS, even though I have inflammation in the colon. As I like to joke, if I paid the physicians enough, I probably could have the condition named after me. (You have a diagnoses of Beachism!)

Microscopic colitis has been a tough condition to deal with. And in some respects I'm surprised I'm still here. In the early 2000s, I went through a pretty ruff period. But doing better these days following a paleo diet, plus taking a few supplements like fish oil, and vitamins D3 and K2. Of late I've been zeroing in avoiding a few foods, beef, gelatin, and milk in particular. Energy levels are up when I avoid cow items, but the grumpy gut remains which causes frustration. I wouldn't be surprised if this was my answer, but time will tell. Hopfully the gut will behave better soon. To add to the confusion, I know I can eat cheese and not be sick to the gut, but will feel exhausted and chilled all day.

I do have a theory about wheat, and milk. It seems the two foods go together. It is rare to eat wheat with out having some kind of dairy with it - cheese, butter, milk, etc.

People with IBS have good luck helping their condition by taking mega doses of calcium tablets. It seems to plug them up good. Since dairy is high in calcium, and known for its constipating effects, it does have me wondering if it is possible to eat wheat frequently with out consuming diary. I wonder this because during most of the 90s I was ill with M.C. but much more energetic. And during that decade I pretty much avoided beef, maybe eating it once a month, and had no dairy products, but I ate a good amount of bread during that time.

Regardless, I keep plugging away.
03-23-2012, 08:48 PM   #94
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Question that I cannot seem to find the answer to: Does microscopic colitis wake you up at night? When I'm having problems I will wake up often from the pain/cramps in my stomach. When this happens they get so bad that hubby usually wakes up to me crying in the bathroom. Sorry if this is tmi, but the pain continues to get worse until everything inside pretty much explodes out, and it's mostly liquid. Sometimes there are parts that aren't liquid, but they aren't enough to have stopped anything from coming out. Is that considered normal for microscopic colitis?
03-23-2012, 08:49 PM   #95
David
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That happens to me about once every six weeks. Sure does hurt...

The first thing I do when I wake up and head to the bathroom is get naked because I know I'm going to be so covered in sweat by the time I'm done I might as well avoid drenching clothes.

Good times.
03-23-2012, 08:51 PM   #96
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That's putting it mildly! I've had 3 kids, 2 naturally......give me childbirth any day! As soon as I wake up I know I'm in for it.
03-23-2012, 08:53 PM   #97
David
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One of my new favorites that started about six months ago is rectal spasms that wake me up. It literally feels like I crapped the bed to the point that I check. Nothing yet (thank goodness) though. It's weird.
03-23-2012, 08:55 PM   #98
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Beach, here is a study that showcases a greatly increased chance of having MC is you have Celiac and of course vice versa.
03-23-2012, 09:00 PM   #99
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I was reading a few minutes about the correlation between celiac and microscopic colitis. I did have an endoscopy and it was ruled out for me, but it did seem like a high percentage of people with celiac have microscopic colitis.

The rectal spasms are horrible, and I have actually had accidents several times. All but one, thankfully, have been at home. I've made it to the point that I don't go out if I don't have to, and I never eat before I go. I'm hoping the entocort I started today will help, as I haven't had any luck with imodium or pepto.
03-23-2012, 09:02 PM   #100
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Fingers crossed for you Jackie Please keep us updated. As of yet I haven't taken any prescription meds but I've thought pretty hard about it a few times...
03-23-2012, 09:05 PM   #101
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Thanks, David. It's great to have the support of the people here who know what I'm going through. My hubby is great, but really can't understand even though he tried. The rest of the family pretty much says eat better and it's all in my head. The only people who really understands is my sister who has crohn's, and to some extent my brother who is waiting on a kidney transplant due to an autoimmune disease. Man, our immune systems are horrible!
03-24-2012, 06:32 AM   #102
Beach
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Beach, here is a study that showcases a greatly increased chance of having MC is you have Celiac and of course vice versa.
Thanks David. I wouldn't be surprised if there was a connection between MC and celiac. Overall at this point believe it is best for most of us to avoid wheat. Too many diseases are associated with its consumption. I'm of the belief these days that if one has a bowel condition, or an autoimmune disease, best to avoid wheat and probably others grains too. They are not worth eating. And while I'm not cured eating this way, I feel much healthier doing so.

When I was diagnosed as a celiac, even though all tests came back negative, I already had a poor opinion of hospitals and doctors. This diagnosis didn't help matters. I recall after having another upper GI test where a biopsy is taken to test for celiac, the doctor came into the recovery room. He mentioned to me that the latest test results had not come back, but he was certain that I was a celiac. I needed to avoid wheat he stressed. He then offered me a wheat blueberry muffin to snack on. I was groggy from the medication, and wouldn't believe it latter other wise, but my father was in the room as a witness. My doctor did a poor job of selling his idea that I should avoid wheat to say the least.

This all happened in the dark ages, before the internet. What would have helped me at the time was having information to reference about avoiding wheat. I doubted my doctor's belief that I was a celiac and for good reason, but if I had internet places to read, see how others did with different ideas, I might have saved my self years of grief.

Oh, the midnight bathroom run. Those were never fun. I would be in a sweat also. I used to suffer from that. I associated the sweats with a rapid heart rate that I would develop, as if I had been exercising. It was always a bit odd in that during the day I would become cold and chilled easily, but at night could be hot and sweaty.

That is one thing I've noticed of late on my current cow avoidance diet. The rapid heart rate has gone away. It's too early to make much of anything from it, but have found it curious. Figure that might be why I'm more energetic of late. I still sweat some though, but that is because the weather is turning hot now!
03-24-2012, 11:37 AM   #103
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Beach, that's me with being cold during the day and hot and sweaty at night. Hubby and I have one major disagreement......what to set the heat/ac at! He's always hot and wants it set to be colder than it is. We can agree at night, but if it's not summer I walk around our house in sweats if I'm not leaving the house! During the winter I spend a lot of time with my slanket! Somehow I tend to not get hot during the day at all. At one point we lived in southwest Texas, and during the summer it was normal to be over 100F most days. I don't think I ever wore shorts! I was totally comfortable in jeans and shirt. Everyone thought I was nuts! At night though I would burn up.
03-24-2012, 03:53 PM   #104
Beach
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Beach, that's me with being cold during the day and hot and sweaty at night. Hubby and I have one major disagreement......what to set the heat/ac at! He's always hot and wants it set to be colder than it is. We can agree at night, but if it's not summer I walk around our house in sweats if I'm not leaving the house! During the winter I spend a lot of time with my slanket! Somehow I tend to not get hot during the day at all. At one point we lived in southwest Texas, and during the summer it was normal to be over 100F most days. I don't think I ever wore shorts! I was totally comfortable in jeans and shirt. Everyone thought I was nuts! At night though I would burn up.
I'm chuckling about this. A little bit ago I returned home and found the natural gas fire place had accidentally been turned on. I live in south Florida where temps have been in the middle 80s of late. I keep my house at 80F, and that feels just right to me! Most others complain that I keep the place to warm though. They would prefer to see the place kept in the lower 70s. I have my folks stopping by for a visit in a hour. If they had seen the fire place turned on, and as hot as it is today, I'm sure they would have thought I'd gone off the deep end!

I don't know what it is about this gut condition, but I'm just like you, chilled at day and warm at night. I've always been that way too. When i was growing up in California I can recall summer temps reaching well above 100F. Of my little group of play pals I was the only one happy to run around in the golden hills on the hottest days. The warmer it was, the happier I felt.
04-03-2012, 03:43 PM   #105
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Climbergirl: I have had that feeling like my brain was shaking. I'm in the same city, most likely at the same U., if you need support.

I was diagnosed 3/16/2012 with MC (collagenous). Before becoming ill in December 2011 I was very active with outdoor sports as well. Even though I am a woman, I don't like hearing its an old woman's disease either. I have started Entocort 9 mgs a day and am having my food sensitivities tested by EnteroLab. Eating gluten free and dairy free helped eliminate the D put I still have a lot of bloating and pain in my left side and lower abdomen. I started relying on ibuprohen when I occassionally experienced rectal spasms about 5 years ago. Of course I am no longer taking that. I also started having night stools and have found out that is common in MC. Some people think its because of food sensitivities. My Dr. at the U is great and attentive but doesn't think that diet is involved. We're hoping that 3-4 weeks of the steroid will create a reversal and send me into remission. Then I should be able to reintroduce gluten, then dairy. I have also stopped drinking caffeine and alcohol. After 4 days of Entocort I am experiencing acid reflux, hoarseness, tightness in my chest and sleeplessness at night even though I am still fatigued. What kind of side effects are other Entocort users experiencing? I don't want to take it for any longer than necessary either. I was so thankful that the D stopped. Now I want to pain to stop. I hope to be able to resume eating gluten and dairy again. I have found useful information at Celiac.com and Microscopic Colitis Suppot as well as here. And google+!
04-21-2012, 08:39 AM   #106
MNGal
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Hello! I was just diagnosed with LC this week and started on Entocort yesterday. Wow is that stuff expensive! I have a high deductible health plan so have to pay out of pocket until I meet my deductible so what a shock!

Anyway, had symptoms for many, many months before seeking help. Terrible diarrhea, very embarrassing and was always afraid I wouldn't be able to get to a toilet fast enough in public. Commuting to work a nightmare. Pepto did not help, Immodium helped somewhat, but still very nervous all the time.

In a way I'm grateful to finally have the diagnosis and hopeful that the treatment will work. I am 41 years old and never had any trouble with digestive issues before last year.

In addition to the Entocort, also started taking probiotics and fiber supplements (Metamucil) yesterday.
04-21-2012, 08:44 AM   #107
David
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Hi MNGal and welcome to the club I understand the feeling of being glad to finally have a diagnosis! And yes, Entocort is wicked expensive. I have a high deductible plan as well ($7,000) so there's no way that's happening for me. I think I probably would have tried it at this point if it wasn't for the deductible.

Please keep us updated as to how you're doing. We're here for you anytime.
04-26-2012, 09:40 AM   #108
raemckee
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In week four of 9 mgs. of budesonide. Still having side effects that were immediate and now have extreme abdominal pain. Anyone else? I've read that achieving remission is best achieved by adhering to 9 mgs. in the a.m. I am losing work and sleep with the pain. It hurts to sit up and to bend over. Are others experiencing this and able to work during this treatment? I anticipate 8 more weeks of this.
04-26-2012, 09:41 AM   #109
David
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Has the abdominal pain gotten worse since being on the budesonide? One should never be in "extreme" pain. Either they need to further evaluate you to see what's going on, add other medication, provide pain medication, or some combination thereof.
04-26-2012, 01:05 PM   #110
raemckee
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The pain has gotten worse. They've prescribed hyoscyamine (antispasmodic) for the pain but it isn't very effective and has side effects as well (dry mouth and eyes, rapid heart beat, fatigue). A couple of hours after taking it I am able to eat something but the relief doesn't last for more than an hour. I also have heartburn from the budesonide that I didn't experience before. The GI clinic has checked everything else out with blood work and stool work, endoscopy and colonoscopy. The mobility pain has been there since I first had symptoms of MC but the BMs normal now since taking 3 pepto bismol 3 x a day for the past week which they prescribed because budesonide wasn't completely helping with frequency or leakage. The abdominal pain, bloating and heartburn increases throughout the day after taking the budesonide.
04-26-2012, 02:37 PM   #111
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Thank you for the information David.
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04-26-2012, 03:03 PM   #112
David
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I assume you've told your doctor how you're doing on the Budesonide? If so, what did they say? It seems to me like you shouldn't be getting worse and maybe trying some other treatment option would be your best bet.
04-26-2012, 03:45 PM   #113
raemckee
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Yes. They want me to continue taking the budesonide because the symptoms continue and I needed to add pepto bismol for additional therapy. Now I have tinnitus though so I may not continue with the next 2 - 3 weeks of pepto bismol. I do feel like I am getting worse instead of better and I am being very careful with my diet, eating gluten free, dairy free and soy free as well as low fiber, no caffeine.
04-26-2012, 04:06 PM   #114
David
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Something doesn't feel right to me. Of course, I'm no doctor. If you're not comfortable with the situation, always feel free to get a second opinion from another doctor.
04-27-2012, 08:51 AM   #115
raemckee
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Thanks David. I got a call from my main GI Dr. today. He was unaware that Bismuth Subsalicylate could cause tinnitus. He is going to look into it now. I stopped using it. Day 3 of ringing and it's gotten worse.

I'm going to keep taking the 9 mgs. of budesonide in the morning. He isn't aware of anyone having abdominal pain from MC. He said we couldn't tell if the pain is a side effect until I go off the budesonide. I need to take it for at least 4 more weeks. He said we can't keep changing the medication or we won't be able to see what is working before that time frame.

He thinks I may have IBS as well as MC, possibly the result of a viral infection (one of my early bouts with diarrhea where my husband was ill too). He is prescribing an anti-depressant for that. I am assuming it will be a tricyclic type. He did say that it will take awhile to go into effect though. It is supposed to help with the pain as well as sleeping at night and slowing down the BM mobility.
04-27-2012, 08:53 AM   #116
David
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Whew, I'm pleased to find out that this abdominal pain I've been having all along isn't due to Microscopic Colitis.

/sarcasm
04-27-2012, 08:54 AM   #117
raemckee
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yeah. it's hard not to be cynical. Side effects are listed for all to read. :-/
04-27-2012, 08:55 AM   #118
David
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I'm also going to have to contact every site that discusses MC such as the Mayo Clinic and tell them to remove "abdominal pain" from their symptoms page.

In short, I'd suggest you get a second opinion because your doctor... well... yeah.
04-27-2012, 08:58 AM   #119
raemckee
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I'm at a teaching hospital so I've seen 5 different professionals thus far.
04-27-2012, 09:45 AM   #120
David
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Ah. Be sure to have them add abdominal pain as a symptom of MC to the curriculum
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