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



 
10-11-2012, 12:19 PM   #241
Jessica
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Join Date: Oct 2010
Location: North Port, Florida
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.
__________________
Dx w/ Crohn's Disease May '08
Dx w/ Graves' Disease June '11
Dx w/ Lymphocytic Colitis October '12
10-16-2012, 07:54 PM   #242
David
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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
10-19-2012, 01:49 PM   #243
Kathryn D
 
Join Date: Oct 2012
Location: Reno, Nevada
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.
10-20-2012, 08:34 AM   #244
Lorna
 
Join Date: Sep 2012
Location: blue ridge summit, Pennsylvania
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!
10-23-2012, 11:44 AM   #245
AMack
 
Join Date: Jul 2012
Location: Hudson, Ohio
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...
10-23-2012, 09:39 PM   #246
David
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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.
10-25-2012, 04:29 PM   #247
cyano
 
Join Date: Oct 2012
Location: San Luis Obispo, California
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.
10-26-2012, 08:50 AM   #248
David
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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.
10-26-2012, 02:16 PM   #249
roqufort
 
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Location: fort worth, Texas
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.
__________________
Roqufort
Retired navy wife and mother of 5
Undiagnosed
Current Meds Remicade, Buspirone, Hydroxychloroquine, zyxal, lunesta, vicoprofen, tizanidine, bentyl, nexium
Previous Meds: sulfasalazine, methylprednisolone, vicodin, Humira

Last edited by roqufort; 10-26-2012 at 02:39 PM.
10-26-2012, 02:42 PM   #250
Toes
 
Join Date: Oct 2012
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.
10-29-2012, 12:00 PM   #251
AMack
 
Join Date: Jul 2012
Location: Hudson, Ohio
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!!
11-05-2012, 09:52 PM   #252
Liesia
 
Join Date: Oct 2012
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.
11-06-2012, 07:27 AM   #253
jenanne13
 
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Join Date: Aug 2011
Location: Lockport, Illinois
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. 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.

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!
11-07-2012, 09:34 AM   #254
David
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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
11-07-2012, 09:47 AM   #255
David
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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*
11-15-2012, 06:12 PM   #256
Salila
 
Join Date: Nov 2012
Location: Lafayette, Louisiana
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!
11-16-2012, 09:02 PM   #257
David
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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.
11-26-2012, 08:14 PM   #258
Jaclyn
 
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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".
11-26-2012, 09:57 PM   #259
Liesia
 
Join Date: Oct 2012
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.
11-26-2012, 10:11 PM   #260
Jaclyn
 
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Join Date: Nov 2012
Location: Greenville, North Carolina
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.
11-26-2012, 10:39 PM   #261
Liesia
 
Join Date: Oct 2012
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!
11-27-2012, 06:02 PM   #262
David
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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?
11-27-2012, 09:09 PM   #263
Jaclyn
 
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Location: Greenville, North Carolina
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
12-04-2012, 08:57 PM   #264
Liesia
 
Join Date: Oct 2012
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.
12-05-2012, 11:04 AM   #265
David
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That's great Liesia, congratulations
12-11-2012, 11:52 PM   #266
Liesia
 
Join Date: Oct 2012
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.
12-12-2012, 12:06 AM   #267
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
That's fantastic! I'm really happy for you
12-15-2012, 06:00 AM   #268
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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?
12-16-2012, 08:32 AM   #269
cindyd
 
Join Date: Jul 2011
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!
12-18-2012, 04:47 PM   #270
jennachristine
 
Join Date: Jun 2012
Location: Kansas City, Missouri
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
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