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Lymphocytic Colitis and Microscopic Colitis Club

David

Co-Founder
Staff member
Location
Naples, Florida
Kris,

Have you been tested for Celiac Disease and had your vitamin B12 levels tested?

Hi Lorraine and welcome. I'm curious about the same questions above for you.
 
Thanks David, and no, not had either tested. Will query with my
GP who will order my blood tests. l know that with Sarcoidosis,
am unable to take calcium or Vitamin D, as these levels usually
elevated. Maybe an idea to test these, as well as iron, so have
on overall picture of where l'm at, and how best to tackle this.

l've read a lot of the posts, and found the information here
very informative, and it's helped me not feel so isolated.

Thanks,
Lorraine
 
Hi David,
Blood tests for Celiac disease negative, Vit B12 normal.
Saw specialist for 4wk follow-up. MC neither Lymphocytic
nor Collagenous, but another sub-group, Atypical or non-
specific (can't remember...wasn't expecting that). Sarcoidosis
not involved as no granulomas in biopsies. Continue with
1g Pentasa am & pm, see doc in 3mths to chk Vit D which is
seriously low.
Does anyone else have MC which is not confirmed as LC or
CC? Any advice / comment would be welcome!
Thank you.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Lorraine:

1. What was your specific vitamin B12 level?

2. I have microscopic colitis, have read a lot about it, and have never heard of non specific microscopic colitis. I've heard of non specific colitis and indeterminate colitis though. Could it have said either of those? Or do you have a copy of the report?
 
Hi David,
Don't have exact Vit B12 level, but will get it and also exact
term he used for the MC. I initially said "so l don't have MC?"
and he said biopies clinically confirmed MC, but that "it was not
one of the 2 main sub-groups".
l'd gone into consult with lots of questions, & this just threw me.
l have seen it whilst researching on Google, but didn't know it
applied to me so ignored.
Will post once l have exact terminology.
Thanks very much! :)
 
Rollingrfarm...sorry, have no clue about these tests, but will try and find out. Thought I had a simple tummy bug, and have catapulted into unknown and scary territory here!!
 
Rollingrfarm...sorry, have no clue about these tests, but will try and find out. Thought I had a simple tummy bug, and have catapulted into unknown and scary territory here!!
Hi Lorraine, I was diagnosed with Collagenous Colitis then put on Prednisone 40mg,.. 4 days after the colonoscopy. I think one of the hardest situations is having a million question about MC and not getting answers because we have to wait so long to see the GI doctor, very frustrating. I am so grateful finding this forum. Sorry your going through all this sending good thoughts your way.
 
Hi Motheroftwins,
Thanks for the good wishes...this forum is excellent, and as I've read through the posts, have understood a little better where I thought I was...until my Gastroenterologist said my MC was "Atypical", and not LC or CC.

I've been on Prednisone for 4 years for an autoimmune disease, luckily now down to just 5mg. Tried to come off it last year, but in weeks had a relapse. Hopefully the doc can get this MC sorted soon [no harm in wishing], as soul destroying.

Take care :)
 
I've been reading all the posts this last weekend letting them sift through my knowledge and feelings. Diagnosed on the 26th of September of this year thus trying to get a handle on it -- what is this disease. Thank you, every one for sharing. It was good that I found out I am not the only one who couldn't bend down with out consequence, :). The shakes at night that are not visible. I think those must be from a build up of toxins/low vitamin/mineral levels from the diarrhea. Ummm. The pain, the sweats, the fear of food -- which is odd for a foodie! The fear -- what life is going to look like in the future and how was I going to tame this disease process. I have a special needs child -- I can't do sick. You have given me hope and lots to think about. Thank you. I go to the specialist at Johns Hopkins for this on Oct 24 because my Dr. here doesn't know anything about it.
 
I've been reading all the posts this last weekend letting them sift through my knowledge and feelings. Diagnosed on the 26th of September of this year thus trying to get a handle on it -- what is this disease. Thank you, every one for sharing. It was good that I found out I am not the only one who couldn't bend down with out consequence, :). The shakes at night that are not visible. I think those must be from a build up of toxins/low vitamin/mineral levels from the diarrhea. Ummm. The pain, the sweats, the fear of food -- which is odd for a foodie! The fear -- what life is going to look like in the future and how was I going to tame this disease process. I have a special needs child -- I can't do sick. You have given me hope and lots to think about. Thank you. I go to the specialist at Johns Hopkins for this on Oct 24 because my Dr. here doesn't know anything about it.
Hi Lorna, welcome to the forum! :) Wishing you luck with your appointment with the specialist. I hope you get put on the right treatment, so you can start feeling better.
 
I am laughing -- yes leg shaking -- it appeared that I had restless leg. Also I had heart palpitations (I've had them my whole life but these didn't fit the pattern). I felt as though I was quivering in my skin at night and it felt like my brain would shut down & reboot (liken it to a computer). . . turns out . . . the diarrhea had leached most of my potassium.

In three weeks, I went from somewhat functional/timed 'eatings' so I could get through my obligations to crash and burning. I lost ten pounds in one week. The potassium was so low they said they wouldn't do the colonscopy because it wasn't safe. So they put me high doses of potassium supplements three times a day and I barely made the guidelines to have the procedure. They told me to stay on it -- it cleared up all the above problems! The week after the procedure I had to have more blood tests for the EDG and still ran low on the potassium.

Other issue they said I had developed osteopenia and again they scratched their heads -- I ate right/active . . . thus concluded it must be a vitamin D deficiency. I was not tested for that just told to take D and Calcium.

Speculation by my GP Dr. is that I was barely holding my own with this disease process and then when given antibiotics for the Rosacea it pushed me over and that is where I am today???? I don't know, but certainly looking forward to unraveling this puzzle.

After the colonscopy the g.i. Dr. said I had colitis and not that bad . . . then the test results came in -- they didn't call me -- I had thought this whole time (August to end of Sept.) that I had colitis. Right after the procedure he told me to get Asacol and start on it . . .. still had diarrhea, and some pain but not as bad. I called his office and started talking with the NP and she said to take fiber, and use Imodium AND she shared that her uncle had colitis and he took VSL #3 double strength and it should help. My insurance filled the VSL one time complementary So that is what I am doing.

When I sat down with the NP last of September -- we looked at the biopsy report it said I didn't have typical colitis, but lymphocytic colitis. She said, we don't know a lot about it. She said if it were her, she see if she can get into the study at John's Hopkins. She said if there was any knew treatments out there they would pioneer them.

So -- ok -- to J.H. I go . . .. I know they have done incredible out of the box treatments via diet that work with other issues so I am looking forward to see what they are thinking and hoping they have done enough research that they are past just cracking the door open.
 
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Hello, glad I found this forum trying to look up anything on Collagenous Colitis had a colonoscopy and then went to San Francisco hospital for a second opinion and I also was Dx with minor crohn's scattered just in my colon, confirmed with second colonoscopy. I was diagnosed a month ago. Found out I was deficient in Vitamin B-12 results, 137, and Vitamin D, results, 12 about 3 weeks ago. I don't remember the normal range and I have scattered hospital papers all over the place. I don't have cancer... Deep breath. :) I am not sure if I posted in the right place but this seemed like a good start. lol
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Rainbow and welcome to the community :)

Did they rescind the collagenous colitis diagnosis and give you a Crohn's diagnosis?

Are you on any medications? Are they supplementing your B12 and D yet?

Again, welcome!
 
Hi David, Yes, the Surgeon in San Francisco changed my dx to Crohn's. Medications: I am on Prednisone (sp) tapering down to 40mg now and possibly in about a week start Entocort (sp) @ 3mg twice a day as I am tapering from Prednisone. That is one option... then the GI mentioned another one, but for the life of me can't remember the name. I am supplementing. B12 shot once every three months and a vitamin for D. Thank you for the Welcome, and if I am typing in the wrong spot let me know. lol
 
I had battling chronic watery diahhrea for going on two years. I mean 30 epsidoes a day. Since I had no insurance, it took awhile to save the money for a colonoscopy, and when I finally had it, I was diagnosed with CC. GI put me on pred for 6 weeks, starting with 40 mg for 1 week, 20 mg for a week, then 10, and 5, etc. As soon as I weaned off the pred, back it all came.
I cannot afford Encort. Pepto made it worse, he gave me 3 months sample of Asacol, no luck there. I took 2 Immodium every 4 hours, not much help there. One discussion forum said GF/DF/SF is the answer. Tried that and all I did was lose 10 more lbs. Overall, I've lost 30 lbs. in the past year. Went to another GI and he said everyone he knows who go GF lose weight. I do know food triggers that can cause 50 episodes a day, so I avoid those foods. The way he explained this disease is, it's like you have no colon at all. It's like your colon is wrapped in Saran Wrap and what goes in, sails right thru. Both GI's told me, this CC is very resistant to treatment. Not much research done on MC. Money is thrown into Crohn's research for drugs, etc. but since MC is rare, not much is done in the research department for this.

Back on a round of Pred for a month, but it has wreaked havoc on my body and I just don't know what to do. One GI mentioned Imuran. I would have to have my blood tested every 2 weeks for several months while on it. Imuran kind of scares me. This GI doesn't take the time to talk about side effects, etc.

So, do I see yet another GI for help on medication? Is it a waste?
When I went to my PCP, I said, I think I need blood work because I've lost so much weight and
worry about deficiencies. She said, well, what do you want me to check? I'm like... you're the doctor. Sigh.

Am I to live with this for the rest of my life. BTW, I am 64, so I fall in that "it is thought to hit women in the 5th and 6th decades of life". lol

Do I take Imuran.

What I have found is, not many doctors truly know "that" much about this disease and will admit it.

I can't work, lot of days I can't leave the house. Nightime incontinence, etc.

Sorry for the rambling, but I'm pretty discouraged. Make that damn discouraged.

Have any on here had any success on any drug that isn't a steroid?
 

David

Co-Founder
Staff member
Location
Naples, Florida
Wow Karen, my heart goes out to you, it sounds like you've got a tough case. I have the sister disease to CC, Lymphocytic Colitis. I hate to jinx myself, but I *think* I just about have mine figured out but I'm guessing everyone is a bit different. Could you try Imuran? Sure. But any thoughts on trying a couple weeks of total enteral or elemental nutrition and seeing if your symptoms improve?
 
I guess I can try Boost and Ensure again. In the past, they just gassed me up real bad, in addition to the watery D. I think maybe it's the whey in protein drinks. Certainly worth a try.
I did the elimation diet with no gluten, dairy or soy for 4 months.

I just can't afford to keep losing weight like I have. 118lbs. on a 5'7" 64 yr.
old woman does not look good. :) Yes, I'm vain, plus, I just feel bad all the time.

Can't travel, or work. Even a dash to a bathroom 20 ft. away doesn't always work. Don't get there in time.

How do I eat to gain weight?

I just want my life back, and I don't see that happening.

They say in sites I've read that this disease is not fatal, but, I don't see how that can be true if you continue to lose weight and nutrients. It's got to have a toll on your whole body.

Immune suppresants such as Imuran and others might be my next try, but they scare the heck out of me. But..... something has to give.
 

David

Co-Founder
Staff member
Location
Naples, Florida
If they gassed you up, it might be worth researching other formulations. Your loss of weight is part of the reason I suggest trying this, it should help stem the shedding of pounds.

I personally have had my symptoms improve with tumeric/curcumin as well. As much trouble as you're having with the D, you may want to research and discuss the idea of trying psyllium husks or seeds with your doctor. Some here have had a wonderful alleviation or reduction of their D with it.
 
Hmmm... I'm going to the health food store next week and I'll get some psyllium husks seeds. Also talk to them about any kind of protein drinks they think would work for me.
 

David

Co-Founder
Staff member
Location
Naples, Florida
I'd discuss the psyllium with your doctor especially since it can interfere with medications.

If you utilize them, I hope they help! Please keep us updated.
 
Well, I'm not taking anything right now. Both doctors can't seem to come up with a treatment, other then Pepto and Immodium, and Pred, which I'm already tapering off of.

Even though I tell them it isn't working, they just keep saying, well, this CC is resistant to treatment, then send me on my way.

I'll continue my search for a GI that knows something about CC and has some better ideas.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Other things I changed that may or may not have helped. As long as I'm not an idiot when I go out to eat and stick with my very strict diet, I do VERY well. I still have some occasional pain but I am 90% better than I was a couple years ago.

1. Reverse osmosis water to reduce nitrates and other crap.
2. I use baking soda/salt/peppermint oil as toothpaste. There's a lot of bad stuff in modern toothpaste and no, I'm not being paranoid.
3. The tumeric/curcumin as I mentioned.
4. This stuff.
5. All organic foods. Nothing I eat at home is not organic. I also try to grow as much of my own food as I can.
6. Krill oil
7. Trigger foods for me include: eggs (big one), wheat, chocolate *cry*. I have also cut out lettuce except what I grow at home (nitrate levels are too high), most grains, soy, sugar, honey, artificial sweeteners, dairy except for hard cheeses.
8. No yeast. This is hard but my allergy tests are off the charts for brewers and bakers yeast. :( Oh god I miss meat sandwiches. *cry*
9. Lot's of time in the sun to the point my vitamin D level was 82 last time I was tested with zero supplements.
10. Yoga
11. Self massage and professional massages.
12. Green tea in the morning and chamomile tea in the evening.
13. A smoothie almost every morning that includes lots of high antioxidant foods.
14. Moringa Olifera leaves. I grow this tree. It's called the, "Miracle Tree" and is probably the healthiest tree in the world. You can get powder online though I don't know how much it is.
15. Neti pot twice a day. This makes a huge difference for my eye inflammation.

Just some ideas for you. I'm happy to elaborate on any.
 
I've read about D-Hist. I need to try that. some folks have said it really helped.

And, it's interesting you mentioned eye inflamation. What is it about MC that causes eye inflamation? I have such eye pain sometimes. Also, taking Pred doesn't help I'm sure. Going to the Opto Monday and hopefully pressure hasn't gone up in my eyes.

I am going to try what you listed above.

And, I know what you mean by missing a meat sandwish. Everytime i pass
by Firehouse Sub shop I want to cry because I want a New York Steamer so
bad. :)

And, I miss grains, my trail mix with nuts, and grapes. sigh
 

David

Co-Founder
Staff member
Location
Naples, Florida
I'm not sure what it is about MC and eye inflammation. Until you came along I wasn't even sure if my microscopic colitis was causing my eye inflammation as nobody else said they had it. Do you have it in one or both eyes? Is it your eyeball or eyelid? Do you have reddening?
 
Hi David,
Re: post 206
My Vit B12 level was 632,1. Specialist confirmed it is Microscopic
Colitis, "non-specific" as it doesn't fit either of the two main sub-
groups, viz. CC or LC. Went back to GP, who put me on Pro B5
twice daily & Imodium. lf no improvement, she'll discuss Pentasa
dosage with specialist, or send me for second opinion.

This condition is soul destroying :( but the comments and feedback
on this site are helpful...so thank you all!
 
I'm not sure what it is about MC and eye inflammation. Until you came along I wasn't even sure if my microscopic colitis was causing my eye inflammation as nobody else said they had it. Do you have it in one or both eyes? Is it your eyeball or eyelid? Do you have reddening?
Both eyes, but right eye the worst. Severe eye pain. In the eyeballs. I have an appointment tomorrow with an Opthamologist, but I had read somewhere that
Pred I been taking can cause pressure in your eyes to increase, and IBD's can cause eye inflamation. Maybe from dehydration. Will be interesting to see what my Opthamologists says tomorrow.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Indeed. The two I've been to didn't have any suggestions other than to take some powerful steroid eye drops which I don't want to do.

Strangely, utilizing a neti pot seems to be making a difference for me.

Just my right eye is bad.

Please let me know what the opthamologist suggests.
 
Indeed. The two I've been to didn't have any suggestions other than to take some powerful steroid eye drops which I don't want to do.

Strangely, utilizing a neti pot seems to be making a difference for me.

Just my right eye is bad.

Please let me know what the opthamologist suggests.
I've used the steroid eye drops in the past, just long enough to get the severe
inflmation down, then used severe dry eye gel afterwards.

They won't let you stay on the steroid eye drops long because it does increase
pressure in your eyes. Dry eyes can be very, very painful. I even have plugs
in my tear ducts to help. Dry eyes can also change your vision for the worse.

My eye pain has gotten worse and I suspect it could be the pred or MC.
I'll let you know my doctors opinion tomorrow.
 
Hi David,
Re: post 206
My Vit B12 level was 632,1. Specialist confirmed it is Microscopic
Colitis, "non-specific" as it doesn't fit either of the two main sub-
groups, viz. CC or LC. Went back to GP, who put me on Pro B5
twice daily & Imodium. lf no improvement, she'll discuss Pentasa
dosage with specialist, or send me for second opinion.

This condition is soul destroying :( but the comments and feedback
on this site are helpful...so thank you all!
Lorraine, I feel your pain and frustration.

Did your GI take biopsies from your colon?

What I've found with MC is that even most GI's have never treated anyone with
MC, and they admit it. It's kind of trial and error.

And, you do wonder if you'll ever be the same again. I wonder that often.
It's hard to talk to friends and family about because of the TMI, even though
most have noticed my drastic weight loss.

I get, "you need to take in more calories". Oh, if it were only that easey.
:)

Me, I'm searching for a GI that HAS experience treating MC.

2nd, or even 3rd opions are sometimes necessary.
 
David,
what ingredients do you include in your smoothies?
I can sympathize with the nutrition issue - seems like that has the hardest effect... I battle every day for energy and trying to get my iron and potassium levels back up...
It's so hard to look fine on the outside and be so sick on the inside... Reading this site helps me mentally so much, Thank you to everyone involved for sharing your journey's - it's such a blessing to not feel so all alone
 

David

Co-Founder
Staff member
Location
Naples, Florida
My smoothies are usually a mix of some of the following (always organic):

1. Oranges
2. Bananas
3. Frozen berries
4. Frozen cherries
5. Kiwi
6. Protein powder
7. Walnuts, pine nuts, brazil nuts, almonds, pumpkin seeds
8. Kale
9. Mustard greens
10. Flax oil
11. Macha powder
12. Acai powder
13. Moringa Olifera leaves

It's common for the preparation to take me 10-15 minutes :) It's worth it though.
 
Just diagnosed with LC. Looks like I have a lot of posts to read through. ;)

A pre-thank you to David for what looks like years of research at my fingertips.

*sigh* and it begins again.
 
Let me see if I can short-hand my story (been awhile since I've been on the forum)...

February this year, weight 138 lbs, size 10/12.
Last week, weight 118 lbs, size 0/2.

Stomach pain and bloating, can't hold onto weight no matter how much I stuff my face. Bathroom 4-10x a day, depending on how hungry I get. Which, by the way, I am always STARVING.

I've been planing a wedding (9/8/12 yay!) for the past year, so my GI thought it was just my Crohn's acting up from the stress (remission since sometime in 2011, not on the tip of my fingers sorry). August I went through a REDICULOUS amount of blood/stool tests. Everything from parasites to Celiac Disease. Everything came back ok. My Crohn's didn't even show up on the map.

Had a Colonoscopy Monday. Everything looked wonderful. GI blamed my smoking and possibly Grave's acting up. I know it's not my Grave's, as I have my blood checked every four weeks. Today the biopsies came in. Six total, ranging from my terminal ileum to rectum. Everything came back Lymphocytic Colitis except for my TI. The pathologist even included this note at the bottom:

Patient's history of Crohn's disease is noted. In some patients with long-standing IBD in remission (or with treated, quiescent IBD), the colonic mucosa can revert to a normal histologic appearance or very mild crypt architecture distortion (part E, Colon Signmoid). THere is also intraeplthellal lymphocytosis within crypts and surface epithelium, surface epithelium degeneration, and an increased lamina propria lymphoplasmacytic infiltrate. There is no evidence of collagenous colitis. No dysplasia or malignancy is identified.
(forgive my spelling, as it's taken from a fax)

So, he wants me to start 9mg of Entocort daily. However, my hubby and I decided last night (funny, I know) that we wanted to try for a baby. Also, I was in the middle of finding a new GI (since my current one tried to put in me box, and we know Crohn's is not boxable).

So... I have no idea what I'm doing yet.
 

David

Co-Founder
Staff member
Location
Naples, Florida
First off, congratulations on trying for a baby, that's exciting :)

As for the Lymphocytic Colitis, I'd suggest cutting out gluten for sure as well as soy and see if that helps at all. There are substantial genetic overlaps between many with LC and Celiac disease even if the celiac panel doesn't come back positive. I need to find time to write about that :(
 
My Name is Kathryn I am a 53 year old RN and run my husbands Chiropractic Office. I was first diagnosed with lymphocytic colitis almost 4 years ago. That diagnosis was changed about 9 months later to collagenous colitis. ( I have read that there may be a progression from lymphocytic to collagenous over time) If that is the case that is what happened to me. Upon my diagnosis I did lots of research (it is kind of inherrant in me since I am an RN) anyway and immediatly started a GF diet. I had also been known to have some issues with dairy so I restricted that as well. Tried all of the allopathic medical treatments, asacol, Entocort etc without much success. I tend to gravitate to alternative treatments as my husband is a chiropractor so I have tried many alternative treatments including turmeric/querecitin (curred my friends crohns but no luck for me), boswellia and just about every other supplement reccomended. I also tried bile acid binders, Colestid and Questran that work for a few days when I start them but then I am back to diarrhea. I can't say I have not improved through out this trek, when this all started I had 15-20 stools a day with lots of pain and cramping, weight loss, fatigue etc. Now I only have 2-4 a day and not much cramping except in the middle of the night. What is the whole thing with this disease and night time stools. I so wish I could get through one night with out diarrhea.

Anyway for those who are reading I did get lots of help with the dietary end of this from a great website finerhealth.com. This site is run by Dr. Kenneth Fine a gastroenterologist in Texas who also suffers with us from MC. He has a lab that tests for food sensitivities using stool rather than blood since the colon is where the immune reaction actually takes place. I have tested for gluten, casien (the protein in dairy) and brewers yeast (they tell me that is common in people with crohn's).

I continue on my journey with this disease without much success. I often read that they believe MC is an auto immune disease. Last year I developed an illness completely unrelated, Pericarditis (inflam. of the sac around my heart) and my doctors all believed that the 2 were somehow related as auto immune reactions. Just like my MC my pericarditis was resistant to traditional treatment. I was on prednisone for 8 months which should have improved my MC but two other drugs I was on made it worse. It figures that the primary treatment for pericarditis is large doses of Motrin (which we all know is forbiden with MC) So I ended up on celebrex also forbiden and colchecine (primary side effect diarrhea and boy did it make it worse!!!) I have now been off all those nasty drugs for 3 months without symptoms of pericarditis but still have diarrhea.

Well that is my story I have lots of information that I have accumulated over the last 4 years and would love to help and if any one has any input for me I would appreciate it. For those of you who complain about costochronditis on this site. Go see a good chiropractor, you may have a rib out of place. We see this frequently in our office and I have experienced it myself. Having a rib put back into place can resolve the pain you referr to as chronic.
 
Dear Kathryn,

Thanks, I enjoyed your post (as well as all the other posts), it makes me feel like I am not alone. I look forward to the day they understand this disease process better. I will definitely look into the Dr. in Texas. I too have a wonderful chiropractor in my life. She uses several modalities (she was originally trained as a physical therapist/then trained/received her Dr. of Chiropractic medicine and pushes natural healing) She keeps me moving so that I am not tempted by the Nsaid bottle! This is definitely a whole body illness, I know it sounds odd, but though being sick I started to go inward. . .thus my shoulders pulled in, slept more from being nutritionally depleted-- of course first time I slept good /but on the shoulder -- and in the end compressed nerve . . . She cleared that up in two visits. . .

You touched on one of my fears -- I have arthritis -- how well does one do -- stay chipper/positive -- and survive without Nsaids. This getting older is getting a little more dicey.

Hope you & every one else out there has a good day!
 
Question for anyone out here with UC or LC: Is there any connection with this and mouth canker sores? I've been on Entocort since August and seemed to be doing well getting better, but just 2 days ago I seem to have somewhat of a relapse and have the pain and diarrheaha again... Coincidentally, my mouth has broken out in about 3 canker sores...
 

David

Co-Founder
Staff member
Location
Naples, Florida
Yes, IBD can definitely coincide with canker sores. Suggestions:

1. Get tested for B vitamin deficiencies, especially B12, B9, and B6. If they won't test you, try taking a complex B vitamin. Those sores can arise from deficiencies in various B vitamins.

2. Try brushing your teeth with just baking soda and salt for awhile (I personally add coconut oil and peppermint as well to make it taste better). There's a lot of stuff in tooth paste that can cause those sores. Heck, there's a lot of stuff in toothpaste that can make IBD worse.
 
I was diagnosed with collagenous colitis 9 years ago. So here's a quick summary.
For medications, I've tried peptobismol, high dose imodium, questran, asacol, imuran, prednisone and entocort. Pepto and asacol helped, but not long term. Imodium and questran didn't help at all. Imuran helped, but I threw up too much with it. Prednisone works great. Entocort is a miracle drug.
For diet, I've tried eliminating many things, the specific carbohydrate, caveman, and vegetarian diets. Eliminating gluten and high fiber things like raw veggies, nuts and beans has helped. When I'm in a bad flare I also eliminate dairy.

I was on Entocort for about 2 years until last June. Every time I go off Entocort, I end up having a flare up. I had treatment for cancer this summer and ended up in the hospital due to a stomach infection and neutropenia. My GI took me off Entocort to help me heal. I was able to stay off Entocort all summer, probably due to very low white blood cells counts. I finished chemo in early September. I started a flare up 2 weeks ago and it got bad quickly - 21 bouts of D yesterday. Fortunately, I saw the GI yesterday and he put me back on Entocort. I'm feeling better already.

So that's a not so brief summary of my story.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hey there cyano and welcome! Wow, you're quite the CC veteran, thank you for sharing what has worked for you and what hasn't. I'm glad you're feeling better after your most recent usage of Entocort. :)
 
what a great forum post! Thank you David for all the great info through out the 9 pages. :)

i am 43 yo female, DX with ankylosing spondylitis in may/2008. I have bouts of costo (costochondritis) regularly. After a minor surgery in sept of 2011, I started having the big D issues. in Jan/12 i was 125 lbs, now, 95 lbs. (I'm only 5'4"). first GI was horrible, started seeing the 2nd one 3 months ago. he believes that i have microscopic colitis. the first GI dr did an endo/colonoscopy and found nothing, but did not do any biopsies. 2nd GI dr just did my 2nd scope in 6 months yesterday, took many biopsies, and even stated afterwards that he is still strongly thinking MC.

This news for me is great! At least there is hope that someone knows whats going on with me. If it does come back as MC, my rheumy will be changing my pain meds for AS to avoid the small amount of NSAIDs. I am going to try the Pepto route until i see my GI dr again in 2-3 weeks. Is there a "typical" dosage of pepto with MC sufferers?

I have been on Humira for 4 years and it has been failing for about a year, so I am starting Remicade in a week replacing humira. I wonder if it will help with the MC at all?

Carrie

EDIT..... ive been lactose intolerant for 25 years but only effected by milk, not all dairy. in the past year, i can not even tolerate even the slightest bit of dairy, even cooking with small amounts of butter causes me issues :(

Edit add.... I've been on many long term tapers of Methylprednisolone (i don't tolerate prednisone) and have not seen any improvement with D issues. b12 has been tested a few times with counts in the mid 300's. not low enough to be abnormal. celiac test came back neg.
 
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I agree! This site has been helpful with the all of the information that David and all of the members have provided. I was just recently diagnosed and it certainly is an emotional journey. There have been times that I am discouraged reading some of the posts, realizing that what I have can be very chronic.
Today was my first appointment with Gastro since I have been diagnosed. It was pretty depressing. Her only advice was Entocort as she said my biopsy showed severe collagenous colits. I asked about diet and she shrugged and said they did all the celiac tests and she did not feel it was Gluten, I asked about any other clients success and she said it is very random, I asked about age and she doesn't have hardly any that are as young as I am, needless to say I left feeling quite defeated. I have been tested traditionally for allergies(nothing), I have had so many blood panels run for "other" autoimmune problems (nothing), and I am currently working on the elimination diet. Until today I thought I probably had a mild case based on the forum, but I guess that is not true based on my biopsy. Currently I am doing everything I can naturally but she said that she had a client refuse to go on the Entocort and now they can't control the symptoms at all... I am so confused about the future and my choices right now. So thank you to everyone who has posted what works and your personal history. It helps not being alone.
 
Toes, I felt the same way. My doc told me that since I was a 42 year old female, it was very unusual that I had UC - since it typically only occured in women 60-80 years old. It was such a relief to join this group and see many ppl my age suffering the same.. This site helps me so much!!! Thank you everyone!!
 
Hello, I am a 42 year old female who was diagnosed with lymphocytic colitis in July 2012, I was dx with lymphocytic colitis after being very sick for about 6 months and very persistent with my doctor. Three weeks after that ended up with c difficile. Was treated for the cdiff and now am on Asacol and entocort. My GI has instructed me to decrease my dose of entocort starting tomorrow. I am so scared cuz I am currently haveing D and afraid that it will get worse. It kind of comes and goes and I am trying to figure out what foods are triggers for me. Unfortunately I think steak is a trigger which I love. The funny thing is I had gastroparesis for years with bouts of epigastric pain, now I have D. I am wondering about the pain/ cramping. What is everybody doing for the cramping pain. for the last week or so I have had cramping daily, and it is waking me up at night. I have used hycosimine that does not help me. I was started on antidepressant because I had read that it can help with the abdominal pain. It has not helped with the pain but I guess it has helped with my anxiety. Please let me know how you are treating the pain because I dont know if I can keep doing this. Also, how do you react to alcohol. I have not drank any alcohol since I was dx and next week I go to Las Vegas for my brothers wedding so would like to relax and have some fun.
 
Morning all!

Having a rough time with my symptoms as of late and thought I would check in with my peeps for support. I am a 34 yo mom of 3 with (never ending)Lymphocytic Colitis and sacroiliitis:hallo3:. I suspect I have had these issues since my tween years, but it was after my 2nd child that my body really went whacko and I did finally get diagnosed. P.S. I love reading about how LC is temporary or that I should try pepto...

I just had my daughter (who was a surprise) in March and as such I have not been treated properly for my disease due to the pregnancy and my choice to nurse her (she has since decided that she will not take a bottle which has made it more difficult?!?) Needless to say, my body is totally out of control.:poo:

I have an appointment with my GI coming up and I finally made an appointment with my Rheumy to further investigate my spine and determine where we are at/what we can do.

This mama needs to get her body under control. Just wondering if anyone else has the spine issues with LC? Read lots about Crohn's and UC with it, but little about LC.

Also, just wondering if anyone has IBD whose children ended up getting it? (I worry my babies will end up with this hell too.)

Thanks for the support!:biggrin:
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hello, I am a 42 year old female who was diagnosed with lymphocytic colitis in July 2012, I was dx with lymphocytic colitis after being very sick for about 6 months and very persistent with my doctor. Three weeks after that ended up with c difficile. Was treated for the cdiff and now am on Asacol and entocort. My GI has instructed me to decrease my dose of entocort starting tomorrow. I am so scared cuz I am currently haveing D and afraid that it will get worse. It kind of comes and goes and I am trying to figure out what foods are triggers for me. Unfortunately I think steak is a trigger which I love. The funny thing is I had gastroparesis for years with bouts of epigastric pain, now I have D. I am wondering about the pain/ cramping. What is everybody doing for the cramping pain. for the last week or so I have had cramping daily, and it is waking me up at night. I have used hycosimine that does not help me. I was started on antidepressant because I had read that it can help with the abdominal pain. It has not helped with the pain but I guess it has helped with my anxiety. Please let me know how you are treating the pain because I dont know if I can keep doing this. Also, how do you react to alcohol. I have not drank any alcohol since I was dx and next week I go to Las Vegas for my brothers wedding so would like to relax and have some fun.
Hi Lieisa and welcome to the community. It sounds like you're having a tough time, I'm so sorry :(

With all the diarrhea, are you making sure to maintain your hydration and electrolyte levels?

I personally find that self massage helps a lot with the abdominal pain. I do it on my lower back, hip, and groin crease. Others use things like hot water bottles./url] that massage can reduce inflammation.

Finding trigger foods is tough. Big ones to start with would be gluten, soy, and the fake sweeteners. Gluten is a HUGE one because many with LC are also gluten sensitive or even Celiac.

As for alcohol, I'd avoid it if you're flaring as bad as it sounds like you are :(
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi jenanne13 and welcome to the community.

Unfortunately, there is significant overlap between Microscopic Colitis and Ankylosing Spondylitis. I would suggest you request evaluation for Ankylosing Spondylitis.

*hugs*
 
Hello all and can I just say WOW! There is an incredible amount of information here and I am so happy to find you!

A Little about me... I am 44. I can't say when my LC started. I was diagnosed in 2010, but I believe it first started over a decade ago. I'm not sure what triggered it, may have been the anti depressants or NSAIDS...I lost so much weight my own family didn't recognize me... I looked seriously anorexic ( I was down to a size 6). I couldn't eat a meal without being withing site of a restroom. Food literally went through my system within about 15 minutes.

Now, however, I am a good sized woman (wear a size 20). I still haven't had a solid stool... yes in over 10 years. I have tried the pepto, the entocort, the prednizone... everything... my GI doesn't even schedule appts for me anymore because he doesn't know what to do.

Oddly enough... NO ONE ever mentioned changing my diet. NEVER. I am going to have to ease into that since I really enjoy pretty much everything on the don't eat that list.

No one ever told me to avoid NSAIDS. I've been dealing with some dental pain and just finished off a bottle of motrin... great! I feel like a fool.

I am constantly exhausted, up at least once or twice a nite to use the bathroom. I guess I am tired of being tired and started googleing and found you!

Will work on giving up that coffee and chocolate ... not sure if it is worth it! JK

Thanks for letting me ramble and vent!
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Salila and welcome to the community! I'm glad you found us as well :)

10 years without a solid stool? WOW.

Yeah, no NSAIDs is a big one for sure. Heck, NSAIDs by themselves can induce colitis.

Please keep us updated as to how you're doing with the diet changes.
 
Hello :::::waving::::: very informative site here. Let me introduce myself.

I'm 29 years old. Just dx'ed with lymphocytic colitis. A little background story.

I have always had a "sensitive stomach". Ever since I was a teen, I had loose stools. I remember being a teen at my boyfriend's house and hollaring at him to turn the music up since he had a bathroom adjoining his bedroom, lol. I never really thought much of it. You learn how to cope, what not to eat, or rather, what you shouldn't eat in order to avoid problems. I also had eczema really bad. Fast forward years of dealing with the same stuff. I got pregnant at 19 with my eldest daughter, now 9. Symptoms were completely gone. It was great. Of course they came back after I gave birth to her. In 2004 I started with some vicious foot pain, which was diagnosed as psoriatic arthritis a year later due to a +HLA-B27, +ANA, -RF, and dactylitis. Treated with a round of prednisone, and all was good. Now I know it wasn't PsA...A year later I was pregnant with #2, and again, symptoms went away. Of course, after that one was born, whoa! Symptoms came back, eczema, diarrhea, everything. A couple months after I weaned her (13 months old- 2008) I started with something interesting. Whenever I would get my cycle I would get excrutiating intestinal pain. It was like everything south of my diaphragm was on fire. My abdomen would be sensitive to the touch. Horrible diarrhea with it- in addition to what I was already experiencing. Went to OB/GYN, she said it was probably prostaglandins, and gave my OCP's. They helped, but it wasn't perfect. In early 2011, I began with RUQ pain after I ate. I work for a rheumatologist, and she told that your liver & gallbladder are in that area when I asked her what was "over there". I am no fool, put 2 and 2 together, and hightailed it to the GI. Long story short I had biliary dyskinesia, 0%EF, and got that bad boy removed. I was SO relieved. I thought that the gallbladder must have been the problem all along! Wrong. Nothing got better, still with the diarrhea. I lost about 8 pounds of bloat, and that was it.

I have been dealing with these symptoms for over half my life at this point. About early/mid-October this year things got rough. I started having 6-10 loose stools a day, and then on October 12th things got really bad. Copious, watery stools all day long. I knew I wasn't "sick". No fever. This was no GI bug. Everything I ate came right back out. And I was terribly thirsty. The more water I drank the more I moved my bowels. And I wasn't urinating. I knew something was terribly wrong. And the pain, oh the pain. It was terrible. That Monday at work we had lunch with a pharmaceutical rep- our Humira rep, ironically. I have known her for almost 5 years, and we have lunch together almost monthly. She knew when I didn't eat my brownie first, something was wrong, lol. I confessed to her & the doctor what was going on, and they strongly advised me to go to a GI, as she knew my past medical history with the "psoriatic arthritis", which is a diagnosis I threw out about 3 years ago. I ended up losing 12 pounds in those first 14 days. 10 days later I was in the office & the doctor agreed that I needed to be checked for IBD's based on my history & current symptoms. And, the gut pain during my cycle came back with a vengence. I had my scope on November 16th. I almost cancelled it because my symptoms weren't so much acute any more, but were more of the chronic type that I was accustomed to. I am glad I didn't! The scope came back clean and I have a follow up appointment with her on December 5th. I always keep a folder of important medical testing that could be helpful in the future- mainly radiology & lab results. I sent a release form from work today to my GI office requesting my labs, and they sent everything- including my path results that I hadn't seen. There were so many papers I almost missed it. I was more concerned with checking my kidney function results, etc. I happened to see the form at the back of the stack, and glanced over it and was like "WOAH!". The path came back as Lymphocytic Colitis! So, here I am.

I look forward to meeting with the doctor next week, and figuring out where we go from here. I am also planning on speaking with her regarding my 9 year old daughter, who has chronic diarrhea & abdominal pain. She was worked up at 2 at Children's in DC, but the sigmoidoscopy & EGD came back clean, so we just chalked it up to her coming from a small family, and her having "mommy's stomach".
 
Wow, Jaclyn. Thanks for sharing, your story sounds a lot like mine. I was finally dx in July after being extremely ill for 3mo. Of course I had on and off D prior to that but nothing that lasted as long. I was first treated with cholestramine for about a month with no improvement, then started with asacol with no improvement after a few weeks I called the GI doc and the started me on entocort. At that time i was so sick and in so much pain ended up in ER. After the 2nd visit to the ER was DX with cdifficille. I am not sure but I kind of think I got it from the colonoscopy. When I finally got the Cdiff cleared up I was started on the Entocort again. I have was on that for about 4 months. By D is gone, except for occasionally, I am now weaning off of the entocort. My biggest problem is the abdominal pain. It is also a burning like pain for me, with some cramping. I requested an antidepressent because I had read in several places that it can help with the pain. I was started on Celexa. It has not really helped with my pain but has really helped with my anxiety about the pain. Even my daughter told me I seem so much happier, and I feel more at ease. I have requested to change to wellbutrin because in my research I found an article that stated that Wellbutrin had the best success rate. I also found on this site some people had mentioned that it had helped. During all of this I have found that you have to research and find what works for you. You have to be very persistent with you health care. Tell them what you want, you know how you feel. Good luck at your appointment I really hope you find what works for you and don't have to go through to much more to get there. This is a great site to know you are not alone.
 
Thank you Liesia!! I almost had my SO take me to the ER two Friday's ago- it was unbearable. As of right now my GI wants me to see a rheum. I am undecided if I will have my boss treat me, or go to another practice in town. I also would like to get some answers about the severe intestinal pain I am having along with my monthly "gift", so I may end up back at the OB/GYN. They always just want to put me on OCP's, so I don't know that I really want to do that. I took Yaz for a long time, and there have been lawsuits against the manufacturer due to gallbladder issues it was causing, so I am a little leery with it.

I still have the abd pain. It is more like a muscle cramp in the LRQ, and then I can literally feel my colon cramping as matter moves through it. Up the right, across the top, and down the left. It is quite bizarre. I'm just glad to have an answer, and be able to mvoe forward from here.
 
Sounds like you have some stuff to weed through. If you have lymphocytic colitis I don't understand why she wants you to see a rheum, is she going to treat you for the LC? I think that part needs to be treated and also you may need to be treated by a rheumatolagist but the fact remains that you have LC and are in a lot of pain, that should also be treated. Do some research on what your options are. I know some people do diet changes, some people do meds. I did meds and luckily have had some success, although still working on it. Some people do high dose pepto bismal, that did not work for me. The pain was so bad that I did have to get on pain meds for a while. Most GI docs won't prescribe it, they require you to talk to you Primary physician so they can monitor it. It is kind of scary but really helped me. Your colon is prob cramping and causing the pain, plus inflamation. Entocort is an anti inflamitory that affects the colon but is not systemic so does not affect the rest of your body like prednisone. I think that is what helped me the most, I was however started on other meds first. I had the same problem with my monthly thing luckily had a hyster about 4 years so that went away. Just remember be an advocate for your healthcare. Good luck!
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Jaclyn and welcome.

I'm glad you went over your lab and biopsy results! Good for you. Sorry to hear about the LC diagnosis though :(

Out of curiosity, have you tried cutting out gluten at any point?
 
No, I haven't tried cutting gluten. For the past probably 16 years carbs have been about the only thing that I can routinely tolerate. Brown rice binds me up so-so, but when I flared a few weeks ago even that didn't help. Triggers for me are all typically anything made of animal product- milk/dairy products- especially yogurt & eggs. Hard cheese ok, soft cheese not ok. I can eat meat as long as it is lean. Usually I only buy chicken & turkey. No pork, no beef. Shellfish like hard crabs are no bueno as well, which is a shame because I grew up in MD & we just found a blue crab honey hole here on the sound ;) Sometimes just the most random of foods will throw me into a tissy. Chocolate has been ok though!!!! Halelujah!! My boss did cut me off from soda & caffiene today :boring:
 
I thought I would share with you all my good news. Last Saturday night I was in so much pain I was up all night. Finally I got up at 4:00 and took the Wellbutrin that I have been waiting on to start. Since Saturday afternoon I have had NO abdominal pain, I am sooo excited. I really hope I finally have found something that will help me be more comfortable and start to live life again. I will keep you all posted.
 
I wanted to update you, it has been 10 days now since I started the Wellbutrin and I am still pain free. I had a GI virus for 24 hrs during that time and I had really bad D and was so afraid it wasn't going to go away, but it did. I am so excited, and pray that this continues. Hope you all are feeling good today.
 
Hi guys, I have LC and I've been on budesonide for a month. Well, I'm wondering what to do, because I have gone from one extreme to the other-from constant diarrhea to constipation. I have to take 1-2 movicols just to go to the toilet. Except, even with those sachets, I am still getting a build up of faecal loading (sorry, i don't know if this is too much info), and then I have these explosive attacks and empty my stomach out. I just can't get anything to a normal kind of stage. And I'm still in a lot of pain. Am I expecting too much too soon? I just still feel really unwell, but on the other end of the spectrum. Still want to sleep constantly, etc. I don't see the specialist for another month. :S Anyone have any ideas or advice?
 
Kell1000,
I've been on budesonide for a little over a year. When I first started my GI had me on 9 mg/day but told me that I can adjust my dosage as needed. I actually went for 3 weeks recently without taking any because I tend toward extremes as well. Once the D started again I started the budesonide again. Went from 9 mg to 6 mg and down to 3 mg now. If everything goes as hoped I will end up on 3 mg every other day.

Good luck!
 
Hello all,

I went on Budesonide (Entocort) for 6 months for Lymphocytic Colitis, tapered off and now have been off for about 2-3 weeks. I have been symptom-free, but today just experienced the dreaded feeling of having to go to the bathroom RIGHT NOW and having watery diarrhea...has anyone relapsed after going off Entocort? How long were you off it before relapsing? My doctor had told me most people he sees don't relapse and the disease is "cured". However, when I read about it online, all the studies say relapse rate is high.

-Jenna
 
Jennachristine, that's what my dr said, he said once he treated me this time I should be fine, possibly cured! I thought it sounded a bit...strange, considered the relapse rates. I'm so afraid of stopping mine, I'm scared I'll go right back to square one! :S Good luck!!! xoxo
 
In all of the research that I have done I have not seen that LC is cured. I have only read that it can go into remission and can be controlled. I have been on Entocort for about fou months and am currently weaning off of it. I am also on asacol and have been told that I will be taking that for ever. Right now I take it 3x per day but hope to get down to two times a day after I am sure that I don't have any problems after ending the Entocort. I still have episodes of D but there is not more mucus and it is not everyday. Right now I have more good days then bad. I would question the fact that your doctor thinks that most people do not relapse. It would be really nice if that were true, but it does not sound realistic to me. Is this Doctor a GI doc? obviously he was smart enough to do biopsies during your colonoscopy but is a little unsetteling for him to say you will be cured. Ask him to show your the research of that or bring your own. Hopefully your D will only last a day or two and get better. Good luck!
 
My GI I'd I'll probably be on budesonide for the rest of my life - said he's never had a patient who has ever been cured.
 
Just an update. I ended up following up with my GI on December 5th. She started me on Lialda- which of course is expensive. I have a $200 deductible on my rx plan, so it would have cost me $232.32 after insurance for the month. GI doc loaded me up on samples, and since my deductible starts over on January 1st, I will utilize the Lialda coupon card & fill the rx then. When I first started the Lialda I felt great! I was having normal bm's, and all was well. I am unsure if the Lialda isn't working as well as it was, or if I am subconciously being a little more brave with my food choices :blush: but it doesn't seem to be working as well now. My LRQ pain had pretty much subsided for a couple weeks, and now it is back :angry-banghead: along with my other symptoms of mucousy diarrhea and the distinct gurgling. It isn't frequent, nor is it watery, but it is there. I feel like I was before my flare- which was not *normal* in retrospect, but wasn't that awful flare. I go back to her on January 17 (18?) and hopefully by then things will have straightened out. It is almost like Gallbladder diarrhea, without the RUQ pain.

My boss told me to take Tumeric, just as David did. She is from India, and very holistic. To the point that her idea of an air freshener is a bowl of baking soda :D She went on and on about it, so I figure it is worth a shot.
 
Geez, I hope that you will be able to find something that works for you. I am not finding that the Budesonide is working much now I am down to one tablet instead of two. I've been flaring again. Arrgh drugs! :S
 
Guys, I'm flaring so bad, it's really really getting me down. It's my birthday today, and everyone is over for dinner, but I have to keep bolting off to the toilet. I'm in so much pain in my back, and my ribs, and my diarrhea does have blood in it (this isn't normally part of lc is it?). There's been blood mixed through it for few days. I feel really miserable because I thought that the budesonide was holding off the diarrhea. I had to reduce my tabs to 1 (from 2 a day), and it's just caused a huge flare. I can't get in to the gastro spec. until Jan 16. Do you think I should see my regular gp for some advice? Everything is shut at the moment anyway. I just don't know what to do.
 
If you are having blood actually mixed in, like in the toilet, then no, that is not part of LC. It *could* be from hemorrhoids. I did have some blood on the paper yesterday, but it was from a fissure that I have that is only symptomatic when I have really bad diarrhea & am straining, or am constipated (rare, rare, rare) and of course, strain. My guess would be if you didn't flare when you were on 2 tabs, and once you dropped to 1 you started to flare, that they will tell you to go back to 2 tabs. Is there any particular reason why you had to back off on your budesonide dose?
 

David

Co-Founder
Staff member
Location
Naples, Florida
I agree with Jaclyn, the blood could be from hemorrhoids or a fissure. I had that issue recently and it scared the heck out of me because blood in the stool is NOT a symptom of microscopic colitis. So yes, get your GP involved so they can check you for hemorrhoids or a fissure. Because if you don't have either of those, then more testing is needed.
 
Jaclyn, I only went off the 2 tabs, because the dr told me that I had to take 2 for a month, then drop off to 1. So I don't know. :S And I only got 1 prescription, so I don't have enough to last me til his appointment if I go back to 2. Gah! :S I don't have hemorroids, but maybe a fissure? I don't know. Thanks guys. :)
 
I was diagnosed with Lymphocytic Colitis when I was 5 years old. My ped. gastro. had only seen 1 other childhood case in his 25 year career. I took prednisone and another steroid for 2 years. Does anyone else have Lymphocytic Colitis with other autoimmune diseases? I also have Hashimotos, eczema, psoriasis, hyperreflexia, and chronic kidney stones on top of my Lymphocytic Colitis. I was wondering if there is a syndrome or something that connects my medical problems? My Lymphocytic colitis is pretty much in remission when I have flareups I experience the worst pain in the world it makes me vomit and I can't leave the toilet. I am 17 years old now and it would be awesome to be properly diagnosed before I go to college. Also, if anyone knows college scholarships for colitis let me know!
 
Wow, doggidget, that sounds awful. You have my sympathies. I have only been diagnosed recently with lc, so I don't know a great deal about it all. I just wanted to wish you luck, I hope you can get some answers. And enjoy college! :D xo
 
Hello all, it has been a while since I posted anything on here so guess I will give you all an update. I started the Wellbutrin and almost within one day my pain was gone. I was completely pain free for about 1 month. Then, pain returned with mild D. It lasted for a week or two and now it is gone again. All in all I am doing so much better. I weaned off of the entocort about a month ago and the D has not come back except for every once in a while but it never lasts more then 1 or 2 bm's. I am having problems with hemorrhoids that are quite painful and bleed every once in a while. I have not necessarially changed a lot in what I eat, I am careful about steak and lettuce, these foods do cause some pain. I am not 100% healed I have about 4-5 good days and 3-4 not so good days. I thank god for what I do have. Hope you are all doing well.
 
Just an update: followed up with the GI Friday. She recommended me continue the 1.2 grams of Lialda twice a day, and added Carafate since I am having difficulty distinguishing if I am experiencing continued LC symptoms, or if I am experiencing bile dumping as I had my gallbladder removed almost 2 year ago. Then we talked about diet, and my inability to tolerate foods such as yogurt. She then suggested that I could also be Lactase deficient and also encouraged me to get tested for Celiac disease because of the link between MC & CD. I declined as I tolerate carbohydrates very well, and told her that I tolerate them so well that if I knew I could eat carbs all the time & not develop Diabetes I would ;)

She was all around pleasant, gave me a sample bottle of 120 Lialda, sent in a years supply of Carafate to the pharmacy, and said she doesn't need to see me back. :eek2: Ever.
 
Hey Jaclyn, I am kind of surprised she does not need to see you back EVER. Do you have a good primary care doctor? I was thinking you are fairly newly diagnosed. I have not seen my GI but I have had to see my primary several times. I am very glad to hear you are doing so well. Good luck.
 
Hey Jaclyn, I am kind of surprised she does not need to see you back EVER. Do you have a good primary care doctor? I was thinking you are fairly newly diagnosed. I have not seen my GI but I have had to see my primary several times. I am very glad to hear you are doing so well. Good luck.
Ehhhh.... my PCP isn't well versed in these things. I see the PA in the practice, which is normally fine, but she had to look up the dosing for Zoloft when I first started it :sign0085: Which I could have told her, but whatever. It was just kind of annoying because I felt a little brushed off, like she wasn't interested in what I have. She did tell me to just eat whatever, and nothing I do will make it worse, but the meds will manage the symptoms. Hello, I have bile issues, That alone can really irritate the gut. I was just diagnosed two months ago. It's not like my symptoms have been stable for a year or anything.
 
I kind of agree with you. My GI said that she did not need to see me unless I have a problem or a concern. I do have a pcp and then will see a np or pa if I need to be see right away and my pcp cannot see me. As long as you are doing ok, maybe just ask around and research a good Gi doctor and see if you can get into them at some point to establish yourself as their patient. Maybe somebody has posted a GI doc on here for your area. Good luck.
 
I am so glad I found a link to get to this forum. I cannot tell you the last time I spent a day pain free and without bathroom issues. In fact I may think something is wrong if my stomach does not gurgle anymore, or I double over with pain. I really do long for a day to be free of it to be perfectly honest.
I had my colonoscopy 10 days ago and today got the call with the biopsy reports which show I have LC. I will see the dr on Friday to discuss I guess my course of treatment.
Needless to say although I am relieved to finally know what is wrong, I am totally depressed.
Does anyone have any suggestions to get out of this blues mood, or is it normal after finding this kind of information out?
I am hoping I posted this in the right area, if I didn't please give me my 50 lashes and send me to the right place
 
Hi laurieswayfl - you are at the perfect site... I myself, just logged on today to be among "understanders"... I have been dealing with LC since May 2012. Since Aug I have been on Entocort which has helped (although i HATE the side effects) anyway, my doc is "weaning" me down and at first I took 3 pills a day and now i just started down on 1 pill a day and I am having the diarrheaha again and I just feel like I will never be free of this.. Please someone who has been dealing with this longer offer some words of encouragement and advice... Doc thinks I am developing celiac or at the very minimum gluten intolerant (I guess LC and Celiac go hand in hand??) so i have been eating gluten free for about 2 mos... Although i feel better, grocery shopping has caused some depression... nothing out of a box anymore.... walking down the cake aisle and seeing everything i can no longer have is very hard... People that dont understand dont understand, so this site means more to me than anyone knows... THANK YOU ALL and please anything you can offer to help, I thank you so much!
 
It is really hard and I do feel so terrible for you too. My issues started almost a year ago but I kept blowing them off thinking tomorrow was going to be better. It wasn't until I realized I had very little quality of life that I needed to discuss this with the dr. I have been living on practically soup for the past few months and am nodding at your grocery store trips as they sound like mine.. I go to pick something up and think about how good it will taste and my stomach will remind me to put it back down. I told the dr I know I need to lose weight but this is not the way I really wanted to do it.
Knowing now tomorrow isn't going to get better and I am really in for a roller coaster ride is really not helping the mood :(
 

David

Co-Founder
Staff member
Location
Naples, Florida
Laurie, welcome to the community. I'm sorry to hear of your diagnosis but am glad you finally have some answers. I think it's understandable that you're feeling down after getting the news. If that feeling persists, then it's something to delve into.

We're here for you :)
 
Hi David, and thank you for the welcome. I spent until almost midnight combing the forum including your diary which has helped me a lot. Bookmarked a ton of pages and feel a little better knowing I am not alone and most of all not imagining all of my issues. Hopefully after the Drs visit I wont feel as if I am floundering as I feel at the moment.
 

David

Co-Founder
Staff member
Location
Naples, Florida
I'm glad the community has helped so far :) I hope your doctors visit will be beneficial as well though at this point, please let us know how it goes and if there's anything we can do for you in the meantime.
 
I was diagnosed with Collagenous Colitis 6 years ago, it has been a struggle to say the least. I have not been able to reach remission or even a state of better. I am currently on 4.8 mg of lialda a day, ranitidine, pepto, just went off imuran. I have been experiencing a burning feeling right under my rib cage, so I had an upper scope done and just found out that I have chronic gastritis also, with out having the h-pylori bacteria. I am wondering if I have collagenous gastritis I dont see my gi again until the 21st of feb, Just wondering if any of you also have experienced gastrtis.
I have in the past taken Entocort for a year 9 mg a day no change at all the Gi DOCS thought I was crazy so they redid my colonoscopy just to find the same finding they did the first time, I have taken prednisone a couple of times, it kind of helps, imuran did nothing for me at all, lialda currently isn't either. I have taken quetran and nothing, and IM sure that i am forgetting some medicines in this list. I feel like I am running out of options here.
 
Hi Laurie,

I totally understand that feeling of utter hopelessness. I was diagnosed with MC 5 months ago, and have had many days where I cannot see myself carrying on. I'm being treated by a very good Physician Specialist/Gastroenterolgist, but also have an understanding General Practitioner, who I go to see when I can't take it any longer. She's empathetic, and always looks at things from different angles. At one stage she gave me pain killers for the cramping, which had constipation as a side effect, which just slowed things down enough to face going on.

This has made the depression I've suffered from for years, much tougher, and I found myself withdrawing from society. It's not easy to talk to people about it, but have a great psychologist, where I'm able to talk through it. The best way I try to cope, is by carrying on at office, as I love my job and feel motivated and inspired, and then allowing myself to feel down when I need to...just sleep, read, watch movies. I don't feel guilty about it, rather acknowledge it, and try do a positive to offset every negative...maybe go for a walk, listen to music, whatever lifts my spirits.

The best thing is knowing I'm not alone. This forum is incredibly helpful and supportive, and helps keep me going. Hang in there Laurie, we can't guarantee it will get better, but as long as you can live your life around it...I won't allow it to define me!...we have a chance.

Best of luck,
Lorraine :)
 
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.
 

David

Co-Founder
Staff member
Location
Naples, Florida
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.
 
I have tried eliminating everything I didn't eat anything but chicken and rice for a month straight. I boiled the chicked also and that didn't help either. I still don't eat a lot of things, I stick to pork and chicken as everything else makes me ill when it comes to meat. I try to bak or boil everything because fried foods make me ill. Vegetables the only thing I think I can digest is well cooked green beans, asparagus, and brussel sprouts. The rest come out whole. Im not sure on dairy but I don't eat or drink much of it at all. I have been tested for celiac, lactose intolerance. both tests were negative. Im a little lost on what to do next. The doctors say that I am the hardest case they have seen.
 

David

Co-Founder
Staff member
Location
Naples, Florida
If food is coming out whole for you Crystal, you have something more going on than just Microscopic Colitis. What has your doctor said about this symptom?
 
Well nohting yet I have been trying to get them to do an EGD forever, they just did that and the result was that I have chronic gastritis, I am also waiting to get a test done to see how fast I am digesting the food, I can't remember the name of the test however. Its a nuclear scan test that is all I know. The GI said my stomach may be too small and dumping too quickly. I don't know if that would cause the food not to digest, but it would make since why I have been low on many vitamins, he couldn't explain that either because my small intestines have checked out fine. I don't know enough about this gastritis and what effects it has on my CC
 
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