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12-18-2012, 06:40 PM   #271
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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
12-19-2012, 12:28 AM   #272
Liesia
 
Join Date: Oct 2012
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!
12-19-2012, 03:57 PM   #273
cindyd
 
Join Date: Jul 2011
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.
12-27-2012, 11:49 PM   #274
Jaclyn
 
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Join Date: Nov 2012
Location: Greenville, North Carolina
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 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 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 She went on and on about it, so I figure it is worth a shot.
12-28-2012, 02:03 AM   #275
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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
12-29-2012, 03:41 AM   #276
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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.
12-29-2012, 11:11 PM   #277
Jaclyn
 
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Join Date: Nov 2012
Location: Greenville, North Carolina
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?
12-29-2012, 11:40 PM   #278
David
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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.
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12-30-2012, 05:40 AM   #279
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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.
01-12-2013, 11:59 PM   #280
doggidget
 
Join Date: Jan 2013
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!
01-13-2013, 04:47 AM   #281
kell1000
 
Join Date: Aug 2012
Location: Victoria, Australia
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! xo
01-18-2013, 09:57 PM   #282
Liesia
 
Join Date: Oct 2012
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.
01-22-2013, 09:12 PM   #283
Jaclyn
 
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Join Date: Nov 2012
Location: Greenville, North Carolina
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. Ever.
01-22-2013, 11:50 PM   #284
Liesia
 
Join Date: Oct 2012
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.
01-23-2013, 07:10 AM   #285
Jaclyn
 
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Join Date: Nov 2012
Location: Greenville, North Carolina
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 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.
01-23-2013, 08:42 PM   #286
Liesia
 
Join Date: Oct 2012
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.
01-28-2013, 05:46 PM   #287
laurieswayfl
 
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Join Date: Jan 2013
Location: Ocala, Florida
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
01-28-2013, 07:36 PM   #288
AMack
 
Join Date: Jul 2012
Location: Hudson, Ohio
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!
01-28-2013, 07:53 PM   #289
laurieswayfl
 
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Join Date: Jan 2013
Location: Ocala, Florida
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
01-29-2013, 09:44 AM   #290
David
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Join Date: Feb 2006
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
01-29-2013, 10:22 AM   #291
laurieswayfl
 
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Join Date: Jan 2013
Location: Ocala, Florida
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.
01-29-2013, 10:57 AM   #292
David
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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.
01-30-2013, 10:32 AM   #293
crystal5520002000
 
Join Date: Jun 2009
Location: kansas city, Missouri

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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.
01-30-2013, 01:11 PM   #294
Lorraine 28
 
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Join Date: Sep 2012
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
01-30-2013, 03:59 PM   #295
laurieswayfl
 
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Join Date: Jan 2013
Location: Ocala, Florida
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.
01-30-2013, 09:03 PM   #296
David
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Join Date: Feb 2006
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.
01-30-2013, 09:04 PM   #297
David
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Location: Naples, Florida
Crystal,

What dietary changes have you tried?
01-31-2013, 10:26 AM   #298
crystal5520002000
 
Join Date: Jun 2009
Location: kansas city, Missouri

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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.
01-31-2013, 10:28 AM   #299
David
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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?
01-31-2013, 11:49 AM   #300
crystal5520002000
 
Join Date: Jun 2009
Location: kansas city, Missouri

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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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