Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Lymphocytic Colitis and Microscopic Colitis Club



 
01-31-2013, 12:30 PM   #301
Lorraine 28
 
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Your reply brought tears to my eyes. It is a good feeling to know I am not alone. I wish none had to ever feel like this or go through the physical and emotional rotten feeling. I had been doing more reading on the web but stopped myself until after my appointment on Friday. It just keeps sinking me down and rather then crying my eyes out I see myself turning it inward and within minutes I am running to the closest bathroom.
Thank you again for sharing a bit of you with me. I was getting ready to put my application in at the local Adult Education to go back to school in July when I received the call and have not known what to do and after reading what you wrote I will be dropping it off tomorrow. 5 months is a long time and I guess it is something for me to look forward to as a goal to try and get better by then. At least well enough I can attend classes.
Hi Laurie,

I'm glad that that you're going to submit your application for further study...it's important that you focus on something positive, and put the condition aside, as far as possible.

At first I also scoured every website and researched all I could, but the enormity of what I was facing was too daunting, so decided to find out what I needed to know to cope with the here-and-now, and move on with my life. Every now and then when it flares up, I might research some more, but I don't let it consume me.

As with your further education, I've always had an interest in photography, and always wanted to persue this. A year ago I joined a Photographic Club, and have enjoyed learning more and meeting people. It's helped me move out of my comfort zone and LIVE...I was just existing before.

I hope you soon feel the same, and don't be discouraged at the down times... "He who has not looked on sorrow, will never know joy" [Kahlil Gibran] ...good times will follow

Lorraine
01-31-2013, 12:44 PM   #302
Lorraine 28
 
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Lorraine,

With that depression, have you been tested for vitamin B12 and vitamin D deficiencies? And have you ever tried supplementing magnesium? All three of those can lead to depressive feelings. I don't ask about a magnesium test as it's pretty useless.

I strongly believe I was deficient in magnesium and supplementing it and getting more in my diet (and water supply) has made a HUGE difference for me.
Hi David,

My Vitamin B12 was 632,1 and Vitamin D was 4. I was prescribed Vitamin D tablets, and after four months Vit D is 16, and the GP has doubled my dose to try raise the levels quicker. I used to take a calcium & magnesium supplement years ago, but not recently.

After battling exhaustion for ever, have just been diagnosed with Hypothyroidism. Was on meds for this about 35yrs ago, then was stopped. Various tests over years have shown it as borderline until now, and am hoping getting this under control, will make life easier.

Thanks,
Lorraine
01-31-2013, 12:51 PM   #303
David
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Hi Lorraine,

Magnesium is actually a cofactor for vitamin D. So taking both together may help in a variety of ways.

I'm a big fan of this brand of vitamin D as it contains the necessary cofactors that people with IBD so commonly lack.
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01-31-2013, 01:12 PM   #304
Lorraine 28
 
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Hi David,

I've just checked out that brand, and mine looks so insignificant by comparison...only 400iu per tab. Will check with my pharmacist if available in South Africa, or what could have similar composition. Thanks for the info

Lorraine
01-31-2013, 01:27 PM   #305
David
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Your doctor is only having you take 400iu?! Yeah, you probably need to be on 10x as much.

www.vitamindcouncil.org is some great reading.
01-31-2013, 01:36 PM   #306
Lorraine 28
 
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Thought as much...that's the GP. The PS/GI hasn't even prescribed it. A 26yr old colleague, who's into gym and healthy lifestyle, told me it was too low. Will definitely try source your recommendation, or a similar one here.

Thanks
01-31-2013, 02:01 PM   #307
David
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This thread has a ton of info on vitamin D.
02-02-2013, 10:55 AM   #308
laurieswayfl
 
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Join Date: Jan 2013
Location: Ocala, Florida
Well I saw my gastro dr yesterday and he wants to try me on the pepto bismol treatment first. 8 per day for 8 weeks. I was also told I can safely take up to 5 immodium pills and if I am going out and will be eating to take 2 about 15 minutes before eating to slow things down. He said 75% of hi patients respond and achieve remmission this way so he wants to try it first. If that doesn't work then he will start me on what he uses for is UC patients. Thursday I was diagnosed with glaucoma and was started on drops, but the eye doctor does not want me on any kind of steroid therapy which I think may be the reason the gastro is trying what he is.
As to diet he said I should eat normal (what is normal? I live on soup). He said it will be rough and painful but he wants me to add back everything, slowly over time. I am deathly afraid to to be perfectly honest.
Does anyone know how this should be done, or any pointers on what I should add back to start with? I tried an egg yesterday and that was wrong... it nausiated me and made me run to the rest room really fast.
02-02-2013, 11:11 AM   #309
Lorraine 28
 
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Hi Laurie,

Everything made me nauseaus at first, and sometimes still does. For a time I lived on about four lightly salted crackers a day, and lost a lot of weight! But also dehydrated. Now I take immodium if I'm going out to dinner, or if it's particularly bad, and it slows things down for a while. Otherwise been advised to avoid spicy food, and fried/fatty food, but otherwise just go with what I feel like.

I have days where it's manageable, and then days when it's not. Then I go back on dry crackers, which seem to work for me. I feel I'm eating something, but it's bland and doesn't nauseate me.

Best of luck
02-03-2013, 10:43 AM   #310
David
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I'd do it scientifically to try and identify trigger foods. Try an elimination diet.
02-03-2013, 12:44 PM   #311
laurieswayfl
 
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I think I have kind of started one yesterday. Painful day forcing myself to eat a meal (other then soup) even when I felt my stomach doing its gurgle routine. I am also cutting out anything with wheat and dairy since I have been reading that this all goes hand in hand. So far no change, but I know it will take more then a day and a half on the pepto routine and diet. I am going to adhere to how to precision routine how to do an elimination diet cutting out the rice and buckwheat too.
Hoping things start to look up soon.
02-07-2013, 10:58 PM   #312
Norcali
 
Join Date: Feb 2013
Hi all. Just diagnosed with lymphocytic colitis after flare-up for last few months. Colonoscopy and biopsies confirmed. This flare-up has been my worst in years. Back track, 20 years old, diagnosed with "terminal ileitis", colitis but just localized. Put n steroids and meds and then like a young kid.... Didnt go back. I learned through diet to control symptoms, add vitamins, work out and I was ok. I would have flare-ups but I knew... Switch to broth, jello lime and orange, drink Gatorade. 2 weeks. Add white rice, inside of bread, bananas, boiled chicken, soft cooked carrots, 2 weeks, sandwiches, lean protein, avocado, hard cheese, soft pasta, eggs boiled then when I hit salmon I knew I could start to eat again.

Then this year, this flare-up was different. My belly is sore and huge after eating. Firm and bloated. Then burping, vomiting and well you know...

Tried diets. No dairy, no gluten, no meats, no oils and fats. All seperate and then all at the same time. Nothing works and Fast forward to now. Had to go to the hospital for dehydration and anti-diarrheal and anti nausea. Never have I thrown up so much plus 15x a day. My diet wasn't working. Colonoscopy and now LC on top. They put me on Asacol HD to try to calm me down. 3 days so far, little better, but not enough to think about leaving my well protected safe bathroom hang outs. Still taking big Prevacid, probiotics, vitamin e, multi vitamin and milk thistle.

I would like tips on diet for LC. Is anyone else dealing with both? I read the thread... Vitamin b and d seem important. That will help with my energy hopefully. Any tips would be great, and suggestions for what to ask my doctor in a month for my follow up. Thanks everyone..
02-08-2013, 12:07 AM   #313
David
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Hi Norcali. Welcome to the community. I'm sorry about your diagnosis

I'm controlling my LC with diet and lifestyle changes. You can read about it here. I'm currently in remission.
02-08-2013, 12:23 AM   #314
Norcali
 
Join Date: Feb 2013
Thank you for the reply. Great info and thanks for the site...
02-09-2013, 09:08 PM   #315
Jaclyn
 
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Location: Greenville, North Carolina
I decided to d/c my Lialda on 1/31 to see just how much it was helping. Today has been a nightmare, and I am pretty sure there is some blood mixed in with the diarrhea.
02-10-2013, 08:28 AM   #316
David
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That sucks You poor thing.

If you have blood mixed in with your diarrhea, something more is going on than just microscopic colitis. Now, it may just be hemorrhoids but your GI needs to evaluate what's going on.
02-10-2013, 11:25 AM   #317
Jaclyn
 
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Yeah, I'm waiting it out, doubled up my Lialda, and might call the GI tomorrow.
02-10-2013, 11:11 PM   #318
Jaclyn
 
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I was just reading someone else's thread about how she is coming to grips with the fact that she has a disease. Perhaps I'm in denial as well? Perhaps my doctor's nonchalantness about the whole situation makes me feel like it isn't that big of a deal. I know what I need to do. I have worked in healthcare my whole adult life. I have read up extensively on this subject, as well as all IBD's.

To a degree, it sort of pisses me off how many consider Humira or Remicade their wonder drug for UC/C, but this condition is largely ignored by medicine, and there is no real gold standard treatment. Hell, there is not even one drug that is prescribed on-label for this condition. It's so frustrating. I felt so good at first when I started my meds, then it was a downward slide and we added Carafate. That worked well, but then I got to thinking if that was helping so much, then the Lialda must not have been doing anything. We had added the Carafate because I couldn't differentiate if I was having LC sx's or if my issues were from lack of a gallbladder.

Today was my daughter's 10th birthday and I spent it in bed. Granted, I think she had a good day regardless, but it was not how I envisioned spending her Golden Birthday (10 on the 10th)...

Why???? Frustrated. Annoyed.

Rant over.
03-17-2013, 10:53 AM   #319
AlexD
 
Join Date: Apr 2012
I just received a diagnosis finally. Lymphocytic Colitis. I guess I'm glad it has a name now. Funny thing is I ended up at this site long ago for something and now I'm back here for this. I guess I should have just set up here long ago.

Looking forward to feeling better!
03-23-2013, 03:52 PM   #320
Jazi
 
Join Date: Mar 2013
Location: Buffalo, New York
Well, after reading many of these posts, my symptoms do not seem as severe. I was just diagnosed yesterday with Lymphocytic colitis

My main complain is the abdominal distension, God forbid I attempt to wear normal pants.

I see people have lost weight, I have gained, possibly because my diet is just horrid.

My first attempt in getting healthy is giving up all sweets once and for all. And from what I'm reading... dairy as well. How about yogurt? Is that relatively safe?
03-24-2013, 08:50 PM   #321
Liesia
 
Join Date: Oct 2012
I am happy for you that you finally got a diagnosis. It is nice to know what your are dealing with. I had to give up yogurt. I used to eat it every day for breakfast and end up with bad abdominal in the afternoon. I have been having a hard time to find out what works and what does not. I have figured out that steak is hard on my stomach and that yogurt is hard. I really just keep hoping that this will go away. I have a couple of good days and then a couple of bad days and I really can not correlate it with food at all. Good luck and please keep sharing. It is nice to know what others have found works for them.
03-25-2013, 04:28 AM   #322
Jazi
 
Join Date: Mar 2013
Location: Buffalo, New York
Thank you Liesia. This is going to be an interesting journey.

I would love to know what everyone symptoms are (as gross as some may be).
04-05-2013, 09:48 PM   #323
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
I was diagnosed with Lymphocytic colitis last week after 5 weeks of WD and weight loss. I was previously diagnosed with autoimmune disease of the pancreas (AIP), treated with 2 courses of steroids. I also have arthritis of the spine, neck and hands. I have been gluten free for almost a year for some unresolved RUQ pain following the steroid tx for AIP. I am taking Asacol and working on an elimination diet. So far, dairy is out. Thank goodness for Silk Almond Milk which I can tolerate very well. Note to David: I have had bouts of episcleritis over the years, which stopped after my rheumatologist started me on Plaquenil. Thanks for all of your advice/adventures. I wish you all the best.
04-06-2013, 10:31 PM   #324
David
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Welcome to the community sarad. I'm sorry to hear of the struggles you've been experiencing

Have you had your vitamin D and magnesium levels tested? If so, what were they?
04-07-2013, 10:29 PM   #325
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
Thanks for asking. I have had Vitamin D tested in the past, and after supplementing, I got up to the normal range. I have not had it tested for about 2 years, though. I was taking magnesium prior to the onset of diarrhea, but stopped taking it b/c I thought it could be causing the diarrhea. Now I know that was not the cause of the diarrhea, but I still haven't resumed taking it and have never had my levels tested. Do you think I should start taking it again? I have a GI appointment late this month. I could ask him about it.
I seem to get diarrhea mostly about 15 minutes after eating (and then several more episodes about 5 minutes apart). Then I am ok until it is time to eat again. I wonder if this means that I am having the mast cell problem. I am planning to buy the D Hist. I have a lot of allergies to medications and have never understood why. I am a retired nurse and for years mixed up antibiotics to add to IV fluids (now that is done in the pharmacy). I have often wondered if I somehow inhaled some of the powder in the process and became allergic.
Your story really inspires me b/c you have improved so much! Thank you for sharing your story.
05-12-2013, 09:44 AM   #326
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Hi everyone, I've been reading through this forum and decided to join, hopefuly for some help! I'm a 40 year old male. I was diagnosed with LC about 3 years ago after having symptoms for over 10 years. It has gotten progressively worse over the past 4 years or so. Now it absolutely controls my life. I have bouts of watery diahrea with undigested food, sometimes up to 15 or 20 times per day. I constantly feel weak, lethargic and extremely tired. I have been on several meds and tried several diets and nothing has really helped. Astonishingly, I've gone into total remission two times in ten years, but it only lasted for a weak or so. It happened overnight, and stopped just as quickly. I don't understand that at all. The last time was in October of 2011. I've always lived a very active lifestyle, but have had to slow down greatly. I've stopped running and now only use my eliptical machine. Even that is getting difficult.
I'm just so lost. I've stopped going to my GI because, unfortunately, I have no insurance and can't afford it. After seeing them for three years, they really couldn't help me. I've been on several meds. I'm not able to try the only thing I've heard works well, Enticort, because it is so expensive. I'm scared to try Prednisone from what I've heard. I was close to giving up, but recently decided to try a better diet again and high dose Pepto.
After having it this long, you would think I'm a veteran of it, but I still have no understanding of this disease and I'm having a hard time living with it. I need to re-enter my life after pretty much hiding for a year and a half, but don't know how, or if I even want to. I want so much to love life again. Any advise would be greatly appreciated. It's comforting to know that others are going through this as well. It's hard for friends and family to understand what I'm dealing with.
05-12-2013, 09:53 AM   #327
David
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Hi Rhyes and welcome to the community,

I'm sorry to hear of your struggles Have you read my holistic treatment thread?

My guess is your weakness and lethargy is coming from magnesium deficiency. There's no way you can have chronic diarrhea for that long and not be deficient. Supplementing magnesium was one of the biggest steps in my recovery.
05-12-2013, 12:36 PM   #328
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Thanks for replying. I haven't read it in full yet, I just glanced at it now. I will read it in detail soon. It's a lot of information that I really want to absorb. I just have a few diet questions. I do drink coffee, which I plan on stopping. Is green or black tea a good alternative or is it the caffiene that's the problem? I also eat natural peanut butters, yogurt, fruit (usually canned in water), bananas, rice cakes, I just stopped breads (gluten), although in the past it really didn't seem to change anything. I've just started drinking fruit juices (from concentrate like Welches grape no sugar or pres. added). Are carbonated beverages bad? I've been eating frozen veggies, cooked well until soft, brussel sprouts, cauliflower, peas, carrots, etc. I eat canned tuna and frozen fish (salmon, talapia, sometimes shrimp). On accasion I eat red meat. I also drink a protien supplement (Whey).
My usual daily diet it Breakfast: Rice cake with PB and Banana. Lunch: Bowl of yogurt with canned fruit. Dinner is usually a meat, rice cake, and a veggie. I don't run anymore, but use my eliptical machine and I lift weights.
Also, I have had a horrible external hemmeroid for a while now. It only protrudes when my belly is bad, so I don't think it's the lifting which I've done all my life.
The odd thing is generally my belly is bad in the mornings with several trips the the bathroom. In the afternoon my belly is fine, not distended or sense of urgency at all. In the evening it starts getting distended again. I usually have "episodes" early in the mornings, and afternoons.
I'm sorry about all of the questions and info. There is so much that confuses me about this I'm just pouring it all out.
Thank you again David for responding. I will read your thread in the next day or so.
Oh, I don't take magnesium currently, or Vitamin D. In the morning I take a multi vitamin, Vitamin E, B-50 complex, Vitamin C, and Glucosamine with MSM, or just MSM. I'm thinking about changing that to Sam-e. I understand that it helps like MSM, but also with depression.
05-12-2013, 12:58 PM   #329
Liesia
 
Join Date: Oct 2012
Hello Rhyes, sorry to hear you are having such a hard time. I wanted to let you know that I have done prednisone a couple of times, it is a much cheaper medication and I did a 2 1/2 week tapered dose. What that means is you start high for about 4 days then taper it off until you are not taking it any more. Both times it helped me out a lot, it at least got me to the point that now when I take pepto it works. I did not have any side effects. You could try the tapered dosing first to see how that works and the med is cheap. Prednisone is not a med I would want to be on for a long time but for a short burst it works great. I also take a b complex vit, and Vit d. I currently am on asacol, It works ok but has not put me into remission. I also started an antidepressent which has helped with the pain a lot. The pain is not completely gone all of the time but I think I can deal with it much better. I had to stop eating yogurt, I found that with in an hour I would have lots of stomach cramping. I love greek yogurt too, so kind of a bummer. Good luck, I hope that you can find what works for you.
05-12-2013, 02:44 PM   #330
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Liesia, Thank you for the info. I actually have Prednisone at home that was prescribed to me before. I was just scared to take it. What was your miligrams for the two week taper? I may try that. I'm fairly desperate. You didn't have any side affects at all? No weight gain, sleeplessness, anything? If it's just two weeks, I would be willing. Thank you again. You and David have already been helpful today. I'm glad I joined this forum.
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