Visit the Microscopic Colitis Foundation Website
Hello to everyone on this message board. My Daughter Nicole is 25 and was recently diagnosed with Lymphocytic Colitis. It started in the summer. Her initial symptoms were pain in the gut area, nausea, vomiting, D over 8-10 times a day. I took her to the ER after she became dehydrated. CT scan revealed thickening of the right colon. She was admitted. They performed stool cultures, blood tests, re-hydrated her and attempted to start her back on food. She had a colonoscopy and it revealed the LC. The Gastro who saw her in the hospital said that it was nothing and she could go home the next day. Her Internal Med Dr. kept her in for two more days, and she was discharged still throwing up and put on Prilosec. Her D and throwing up continued, then she got a bad case of strep throat from me. She struggled to get better, but was still throwing up and having D.
She switched Gastro doctors because the other gastro was just too busy to provide the care that she needed. The new Gastro gave her a medrol dose of steroids which helped slightly. He also did an EGD to rule out celiac disease and to determine what the pain in her stomach was. The EGD revealed irritation through the stomach, but no real ulcer. Also negative for Celiac disease. Since she has not been symptom free, he started her on Asacol, something for her stomach to heal the irritation and Bentyl.
She now has pain on the right and left side of her colon, she stopped throwing up and the Asacol has curbed back the D, but she will occassiionally still get attacks. She is experiencing pain of 5 on a scale of 1-10. She has not been told what to eat or how to eat other than to stay away from spicy foods and pop.
Her Dad (my Husband) who passed away in 2008 developed sever ulcerative colitis when he was 30 years old. We were very concerned that she had developed the disease as well. The gastro is not concerned about that.
He has asked her to stay on the Asacol and to come back to see him in January of 2011. I am frustrated because she is living with the pain, and the uncertainty of what is really going on.
It is difficult to find solid information on how to cope with this disease or how a Dr. should be treating the patient. I have tried to read as much as I can, but sure could use some advice on what is going on. Is this typical? Should we be concerned about UC? Does the pain ever go away? How do we know if she is making progress to remission if there is such a thing? I am obviously concerned and would love some advice.
Sharon
Daughter newly Diagnosed Maybe?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
NicolesMom
- Posts: 9
- Joined: Thu Nov 04, 2010 11:39 pm
- Location: Sterling Heights, Michigan
Daughter newly Diagnosed Maybe?
One thing I have learned about having children, they never stop needing you and you never stop worrying about them!
Hi Sharon,
Sorry to hear your daughter is struggling but you have found the right place. Welcome to our internet family.
We encourage all new members to addres dietary issues. The vast majority of us are sensitive to gluten, as well as dairy and soy. There can also be additional intolerances. Roam around this site and you will find lots of useful diet information. Your daughter will know she is going into remission when pain stops and stools become more normal. Many of us have achieved remission with diet alone. This is somethign that doctors don't recognize, but becasue we live with this disease every day and they don't, we feel like we have a very good handle on treatment options. Entocort is the drug of choice for treating MC - has she tried that?
Both miscroscopuc colitis and ulcerative colitis are considered inflammatory bowel disease, as well as Crohn's disease and mastocytic enterocolitis. They are separate diseases. We have members who have MC but also have another inflammatory bowel disease.
Staying away from spicy foods and pop is clearly not the answer so I hope your daughter is willing to look at her diet as diet plays such a huge role for all types of colitis. Many of us have used Enterolab www.enterolab.com to determine some food sensitivites. A few others of us have also used Mediator Release Testing www.nowleap.com when Enterolab didn't capture all of the sensitivities.
I encourage your daughter to join this forum as well. It will be important for her to do some of her own detective work and to be able to ask her own questions since ultimately she will have to manage this disease. Of course you can be a great support to her as she figures this out.
Take care,
Mary Beth
Sorry to hear your daughter is struggling but you have found the right place. Welcome to our internet family.
We encourage all new members to addres dietary issues. The vast majority of us are sensitive to gluten, as well as dairy and soy. There can also be additional intolerances. Roam around this site and you will find lots of useful diet information. Your daughter will know she is going into remission when pain stops and stools become more normal. Many of us have achieved remission with diet alone. This is somethign that doctors don't recognize, but becasue we live with this disease every day and they don't, we feel like we have a very good handle on treatment options. Entocort is the drug of choice for treating MC - has she tried that?
Both miscroscopuc colitis and ulcerative colitis are considered inflammatory bowel disease, as well as Crohn's disease and mastocytic enterocolitis. They are separate diseases. We have members who have MC but also have another inflammatory bowel disease.
Staying away from spicy foods and pop is clearly not the answer so I hope your daughter is willing to look at her diet as diet plays such a huge role for all types of colitis. Many of us have used Enterolab www.enterolab.com to determine some food sensitivites. A few others of us have also used Mediator Release Testing www.nowleap.com when Enterolab didn't capture all of the sensitivities.
I encourage your daughter to join this forum as well. It will be important for her to do some of her own detective work and to be able to ask her own questions since ultimately she will have to manage this disease. Of course you can be a great support to her as she figures this out.
Take care,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Sharon,
Welcome to our internet family. We consider ourselves a family, because you have to have this disease, to truly understand it. Unfortunately, most GI docs consider it to be "a disease marked by watery diarrhea, with a benign course". That's why they are usually unable to effectively treat it. In reality, it's a very insidious, life-altering disease, that can affect every organ in the body. We all have somewhat different symptoms, and respond differently to various treatments. That's another reason why doctors don't have much luck treating the disease effectively.
I agree with everything that Mary Beth said.
To answer your questions:
Is this typical? Symptoms vary among patients, but yes, her symptoms are very common for many of us.
Should we be concerned about UC? If you search the internet, you can find a handful of case studies where MC is claimed to have segued into UC. No study has ever been done, however, to establish a statistical correlation. IMO, those cases are merely coincidental. I believe that we have the same risk of developing another IBD as anyone else in the general population. Genetics may predispose to the various IBDs, but I see no evidence that MC is an early stage of UC or Crohn's. MC is simply a type of IBD. A few individuals develop more than one form of IBD, (we have several members who have MC and UC, or MC and Crohn's), but I doubt that the presence of one type of IBD significantly increases the chances of developing another. If that were the case, many more people would develop an additional form of IBD. In fact, people having multiple types of IBD are quite rare.
Does the pain ever go away? Yes, if the disease is properly treated. Most of us who have been members of this board for a while, are in remission, and we remain in remission, as long as we maintain our treatment.
How do we know if she is making progress to remission if there is such a thing? Treatment can take a while to be effective, but if it is working, she will see improvements in her symptoms, as time goes by.
FYI, many/most of us have found Asacol to be a rather ineffective treatment for achieving remission, (though it works fairly well as a maintenance drug for some patients, after remission is attained). Some members have found that Asacol made their symptoms worse. To expand a bit on what Mary Beth said about treating our symptoms by means of the diet, it usually takes several months to a year for the diet to work, (it takes a long time for the gut to heal from damage done by gluten), but the symptoms can be controlled much faster, by the use of Entocort EC. However, unless the diet is adopted also, the symptoms will return whenever the Entocort is discontinued. Even with the addition of Entocort to the treatment, it still takes about a year or longer for the gut to heal. IOW, the Entocort will help to suppress the symptoms, while the diet heals the gut. This is true, regardless of the type of drug that might be prescribed by the GI doc, for treating the disease. Drugs can suppress the symptoms, but the inflammation will continue to be generated, as long as we continue to ingest foods to which we are sensitive.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. We consider ourselves a family, because you have to have this disease, to truly understand it. Unfortunately, most GI docs consider it to be "a disease marked by watery diarrhea, with a benign course". That's why they are usually unable to effectively treat it. In reality, it's a very insidious, life-altering disease, that can affect every organ in the body. We all have somewhat different symptoms, and respond differently to various treatments. That's another reason why doctors don't have much luck treating the disease effectively.
I agree with everything that Mary Beth said.
To answer your questions:
Is this typical? Symptoms vary among patients, but yes, her symptoms are very common for many of us.
Should we be concerned about UC? If you search the internet, you can find a handful of case studies where MC is claimed to have segued into UC. No study has ever been done, however, to establish a statistical correlation. IMO, those cases are merely coincidental. I believe that we have the same risk of developing another IBD as anyone else in the general population. Genetics may predispose to the various IBDs, but I see no evidence that MC is an early stage of UC or Crohn's. MC is simply a type of IBD. A few individuals develop more than one form of IBD, (we have several members who have MC and UC, or MC and Crohn's), but I doubt that the presence of one type of IBD significantly increases the chances of developing another. If that were the case, many more people would develop an additional form of IBD. In fact, people having multiple types of IBD are quite rare.
Does the pain ever go away? Yes, if the disease is properly treated. Most of us who have been members of this board for a while, are in remission, and we remain in remission, as long as we maintain our treatment.
How do we know if she is making progress to remission if there is such a thing? Treatment can take a while to be effective, but if it is working, she will see improvements in her symptoms, as time goes by.
FYI, many/most of us have found Asacol to be a rather ineffective treatment for achieving remission, (though it works fairly well as a maintenance drug for some patients, after remission is attained). Some members have found that Asacol made their symptoms worse. To expand a bit on what Mary Beth said about treating our symptoms by means of the diet, it usually takes several months to a year for the diet to work, (it takes a long time for the gut to heal from damage done by gluten), but the symptoms can be controlled much faster, by the use of Entocort EC. However, unless the diet is adopted also, the symptoms will return whenever the Entocort is discontinued. Even with the addition of Entocort to the treatment, it still takes about a year or longer for the gut to heal. IOW, the Entocort will help to suppress the symptoms, while the diet heals the gut. This is true, regardless of the type of drug that might be prescribed by the GI doc, for treating the disease. Drugs can suppress the symptoms, but the inflammation will continue to be generated, as long as we continue to ingest foods to which we are sensitive.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Welcome!
Your daughter has had a really rough time, and a fairly severe onset, although most of us remember a rather sudden onset of chronic D. It's great that your daughter was tested for celiac disease before starting any dietary interventions. It is important to note, however, that she may still be gluten intolerant, even though she doesn't have villus blunting in her small intestine. You may want to request gene testing for HLADQ genes to determine if she is at risk for developing celiac later in life. I have LC and personally had remarkable changes when I adopted the Gluten-Free/Dairy-Free diet. I was also soy and yeast-free at first, but have begun adding those back in small quantities (GF soy sauce, soybean oil, soy lecithin, etc). Within 10 days I noticed a 70% improvement in the frequency of D (4-7/day to 1-2/day). My severe bloating went away, as did the pain in my right colon and vague joint pains in my lower back and hips. However, the infrequent bowel movements continued to be loose or watery for several months. But at least I could leave the house without worry! Pepto Bismol tablets were also very helpful when things seemed to flare. There is an 8-tablet/day regimen for treating MC that she might try instead of the Asacol, but we here strongly suggest combining this with the diet changes. I could never get to 8 tabs/day. I usually stopped at 4, but I was taking the chewables. The Pepto tabs you swallow are MUCH better.
I wish your daughter a speedy recovery from this acute stage of the disease. Hopefully she can then take the reigns and figure out how to manage it herself with diet, occasional OTC meds (pepto and immodium), and stress management.
Your daughter has had a really rough time, and a fairly severe onset, although most of us remember a rather sudden onset of chronic D. It's great that your daughter was tested for celiac disease before starting any dietary interventions. It is important to note, however, that she may still be gluten intolerant, even though she doesn't have villus blunting in her small intestine. You may want to request gene testing for HLADQ genes to determine if she is at risk for developing celiac later in life. I have LC and personally had remarkable changes when I adopted the Gluten-Free/Dairy-Free diet. I was also soy and yeast-free at first, but have begun adding those back in small quantities (GF soy sauce, soybean oil, soy lecithin, etc). Within 10 days I noticed a 70% improvement in the frequency of D (4-7/day to 1-2/day). My severe bloating went away, as did the pain in my right colon and vague joint pains in my lower back and hips. However, the infrequent bowel movements continued to be loose or watery for several months. But at least I could leave the house without worry! Pepto Bismol tablets were also very helpful when things seemed to flare. There is an 8-tablet/day regimen for treating MC that she might try instead of the Asacol, but we here strongly suggest combining this with the diet changes. I could never get to 8 tabs/day. I usually stopped at 4, but I was taking the chewables. The Pepto tabs you swallow are MUCH better.
I wish your daughter a speedy recovery from this acute stage of the disease. Hopefully she can then take the reigns and figure out how to manage it herself with diet, occasional OTC meds (pepto and immodium), and stress management.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Sharon & Nicole you certainly have found the best site on the internet for dealing with MC. I was diagnosed with CC and Crohns last April and was fortunate enough to have found this site within the first week. Overall MC is still poorly understood by the medical community, and by working here as a group we have found what seems to work best for most of us in dealing with this disease.
As pointed out already the first line of treatment is the diet, and even with the meds the diet really must be followed to allow for healing. For me I react to gluten, soy and dairy. Also I have to avoid any raw veggies or fruits except for bananas. Initially this seemed hard but after a handful of weeks and with the help of the members on this site, it got much easier. Overall this as meant being very diligent in reading the labels on the foods I purchase, being very careful going out to eat and preparing all of my own foods.
For medications I started on Entocort 9mg a day which did a great job of helping calm things down. Due to the Crohns though I have needed to transition to Imuran for longer term maintenance of both conditions without steroids.
Welcome to the group and feel free to ask anything, after a while with this disease we have found that there really are no gross topics anymore.
Take Care
-Joe
As pointed out already the first line of treatment is the diet, and even with the meds the diet really must be followed to allow for healing. For me I react to gluten, soy and dairy. Also I have to avoid any raw veggies or fruits except for bananas. Initially this seemed hard but after a handful of weeks and with the help of the members on this site, it got much easier. Overall this as meant being very diligent in reading the labels on the foods I purchase, being very careful going out to eat and preparing all of my own foods.
For medications I started on Entocort 9mg a day which did a great job of helping calm things down. Due to the Crohns though I have needed to transition to Imuran for longer term maintenance of both conditions without steroids.
Welcome to the group and feel free to ask anything, after a while with this disease we have found that there really are no gross topics anymore.
Take Care
-Joe
Joe
Welcome, Sharon. Your daughter is fortunate to have you for her advocate. She sounds quite ill, and the MC usually comes with severe fatigue and "brain fog". This means that it's often difficult to wade through all the information on the forum, and you can help her get started, and encourage her. The support of family is so important! But as Mary Beth pointed out, Nicole will need to take charge of her diet and treatment at some point, as it is a life-time commitment.
You've gotten a lot of great diet advice, and the only thing I can add that I didn't see already mentioned is the importance of removing fiber from Nicole's diet. Fiber irritates the sensitive intestine and agravates the symptoms. I'm about 15 months into controlling my MC with diet, and still find that I have to be careful with fiber. For example, lettuce is probably the worst offender for most of us and I haven't had a salad in months. Fiber is the reason Joe said to avoid raw fruits and veggies. Veggies and fruits with skins should always be peeled first before cooking, as that's where most of the fiber is located.
Some people here have had success with a very simple diet of easy-to-tolerate foods, but I'll let them give you the details.
I know it's so hard to watch your child (no matter the age) suffer like your daughter has. Hopefully you will find the tools here to get her moving toward remission and good health!
Rosie
You've gotten a lot of great diet advice, and the only thing I can add that I didn't see already mentioned is the importance of removing fiber from Nicole's diet. Fiber irritates the sensitive intestine and agravates the symptoms. I'm about 15 months into controlling my MC with diet, and still find that I have to be careful with fiber. For example, lettuce is probably the worst offender for most of us and I haven't had a salad in months. Fiber is the reason Joe said to avoid raw fruits and veggies. Veggies and fruits with skins should always be peeled first before cooking, as that's where most of the fiber is located.
Some people here have had success with a very simple diet of easy-to-tolerate foods, but I'll let them give you the details.
I know it's so hard to watch your child (no matter the age) suffer like your daughter has. Hopefully you will find the tools here to get her moving toward remission and good health!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Hi Sharon, and welcome. I am new to this site, like you, and have found it to be of enormous value in educating me, and especially letting me know that I am not alone. This disease (I have collagenous colitis, which is a sister to lymphocytic colitis) with all of the associated pain, nausea, and embarrassment can make one really feel alone and I am very thankful that I found this site.
Having read so extensively on this site I cannot tell you exactly where I found this, but two items of advice I have found especially beneficial. The first is to eat very bland food like plain chicken, rice, jello, well-cooked vegetables like green beans, and no fresh fruit except bananas until symptoms go into remission. This has really helped with my nausea and even started helping with the D.
The other piece of advice is to always have a change of clothes. I haven't done this yet, but I will be starting that this weekend. Especially at church, one cannot always get into the bathroom right away.
Again, welcome. I have adult children, too, and I know just how you feel when they are hurting and you can't fix it with a kiss and a bandaid anymore.
Having read so extensively on this site I cannot tell you exactly where I found this, but two items of advice I have found especially beneficial. The first is to eat very bland food like plain chicken, rice, jello, well-cooked vegetables like green beans, and no fresh fruit except bananas until symptoms go into remission. This has really helped with my nausea and even started helping with the D.
The other piece of advice is to always have a change of clothes. I haven't done this yet, but I will be starting that this weekend. Especially at church, one cannot always get into the bathroom right away.
Again, welcome. I have adult children, too, and I know just how you feel when they are hurting and you can't fix it with a kiss and a bandaid anymore.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
-
NicolesMom
- Posts: 9
- Joined: Thu Nov 04, 2010 11:39 pm
- Location: Sterling Heights, Michigan
Thanks everyone so much for your kind words and comments! Unfortunately, my Daughter is not in the mode to accept what is happening to her. I guess she needs time to grasp all of this. I will keep everyone posted.
One thing I have learned about having children, they never stop needing you and you never stop worrying about them!
Sharon,
Almost all of us go through the 5 sages of grief, before we are able to deal with this disease. For some, the first stage is the most difficult to overcome, (a few can never get past this stage), but most of us eventually overcome it, and get on with our lives. The first stage, of course, is denial, and the other stages are anger, bargaining, depression and acceptance, (in that order). As long as we remain in denial, no progress can be made. When we reach the acceptance stage, then we can get our life back.
Tex
Almost all of us go through the 5 sages of grief, before we are able to deal with this disease. For some, the first stage is the most difficult to overcome, (a few can never get past this stage), but most of us eventually overcome it, and get on with our lives. The first stage, of course, is denial, and the other stages are anger, bargaining, depression and acceptance, (in that order). As long as we remain in denial, no progress can be made. When we reach the acceptance stage, then we can get our life back.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sharon,
Nicole is so fortunate to have you to help her with her journey. Stick with this forum. You will find nothing but kind, helpful, supportive members, and tons of information.
One thing not mentioned in this thread (unless I missed it - quite possible, knowing me) is to keep a food diary. Once you get around the forum you will see it mentioned often, but I wanted to throw in my two cents because keeping a food diary has helped me keep a handle on things.
All the best to you both!
Nicole is so fortunate to have you to help her with her journey. Stick with this forum. You will find nothing but kind, helpful, supportive members, and tons of information.
One thing not mentioned in this thread (unless I missed it - quite possible, knowing me) is to keep a food diary. Once you get around the forum you will see it mentioned often, but I wanted to throw in my two cents because keeping a food diary has helped me keep a handle on things.
All the best to you both!
Robbie
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sharon
welcome to yourself and nicole. Most of us had a very unsettled drawn out period before diagnosis.
in my opinion, one of the reasons that there may not be solid information out there is that there are so many variables with this condition
for each of us our triggers for MC symptoms can be quite different, and treatment wise what works for one may not work for another.
this site is full of wonderful wise supportive people, where you can ask questions about anything, as sure enough there is at least one other who has had something similar.
gaining remission and wellness takes a bit of time, patience and tenancity.
good luck absorbing all the information
welcome to yourself and nicole. Most of us had a very unsettled drawn out period before diagnosis.
in my opinion, one of the reasons that there may not be solid information out there is that there are so many variables with this condition
for each of us our triggers for MC symptoms can be quite different, and treatment wise what works for one may not work for another.
this site is full of wonderful wise supportive people, where you can ask questions about anything, as sure enough there is at least one other who has had something similar.
gaining remission and wellness takes a bit of time, patience and tenancity.
good luck absorbing all the information
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama