Chronic diarrhea

Posted by taonamission @taonamission, May 2, 2021

I've had chronic diarrhea for a year and 2 months. I've been seeing a gastroenterologist since December 2020. I've been tested for celiac, c diff, crohn's, diverticulitis, colitis, and pancreatitis. I had a colonoscopy in January with nothing showing, and biopsy not revealing micro inflammation.

I sought gastroenterology help after imodium quit working. I've been on Cholestyramine, xifaxin, Creon, and Lomotil, all with no effect.

I'm going to get a second opinion at a different clinic soon. I feel like the current gastroenterologist is just throwing pills at me to see if anything works. I really want to get to the bottom of why this is happening, not just band aid pills. It's been suggested that this is all because of stress. I'm seeing a counselor to help with that, but so far no relief. Actually my condition is stressful in itself. I have to bathroom map, and it's affecting my relationship with my husband. I'm desperate for answers. Anyone else have this with the absence of all the regular gastro/digestive diseases?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@kitty2

anyone out there taken Lialda for ulcerative colitis ..any help?

Jump to this post

How long does it take Lialda to work..

REPLY

I have been dealing with chronic diarrhea for months, most likely due to my liver and pancreatic duct dilation. This week I noticed my stools are now orange in color. Nothing I eat will digest properly, including a bland diet. My doctor has ordered more tests. I am exhausted from cleaning my bathroom. I keep a large container of vinegar in my vanity, and last night had 8 episodes of diarrhea. Forgive me for being so forthright.
I am due to see a liver specialist on March 7 2023 and will ask her if my ulcerative colitis has returned, which I understand can sometimes happen. I am feeling very anxious about my disease and subsequent weight loss, as well as other changes that have occurred in my life because I have lost 25 percent of my body weight. While I have gotten used to the "new me", I still cannot get over the fact that so many in my community continue to shun me as though I have the plague.
Friendships have also changed, and this week I received a letter from a very close college friend who flat out told me that she did not think that I understood that she had a demanding job and does not have the time to write letters to me. For many years we had this great letter writing back and forth, and it ended abruptly. I am trying to decide if her letter even warrants a response. Of course I know she works and is "living a full life" as she described to me. I too had a demanding job until I did not.
Someone recently mentioned to me that friendships change when one has a chronic illness, something I never gave any thought to until I became so sick and emaciated looking. I commented to my eye doctor's assistant yesterday that it seemed our world is so lacking in basic humanity, a characteristic I have always been proud of having.
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.

REPLY
@frances007

I have been dealing with chronic diarrhea for months, most likely due to my liver and pancreatic duct dilation. This week I noticed my stools are now orange in color. Nothing I eat will digest properly, including a bland diet. My doctor has ordered more tests. I am exhausted from cleaning my bathroom. I keep a large container of vinegar in my vanity, and last night had 8 episodes of diarrhea. Forgive me for being so forthright.
I am due to see a liver specialist on March 7 2023 and will ask her if my ulcerative colitis has returned, which I understand can sometimes happen. I am feeling very anxious about my disease and subsequent weight loss, as well as other changes that have occurred in my life because I have lost 25 percent of my body weight. While I have gotten used to the "new me", I still cannot get over the fact that so many in my community continue to shun me as though I have the plague.
Friendships have also changed, and this week I received a letter from a very close college friend who flat out told me that she did not think that I understood that she had a demanding job and does not have the time to write letters to me. For many years we had this great letter writing back and forth, and it ended abruptly. I am trying to decide if her letter even warrants a response. Of course I know she works and is "living a full life" as she described to me. I too had a demanding job until I did not.
Someone recently mentioned to me that friendships change when one has a chronic illness, something I never gave any thought to until I became so sick and emaciated looking. I commented to my eye doctor's assistant yesterday that it seemed our world is so lacking in basic humanity, a characteristic I have always been proud of having.
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.

Jump to this post

Hi @frances007, nice to connect with you again. I moved your post to this existing discussion that @taonamission, who also has colitis and chronic diarrhea, started:
– Chronic diarrhea https://connect.mayoclinic.org/discussion/chronic-diarrhea-1/

I did this so you can review the helpful posts already made and connect easily with other members like @nancykeenan @catstx @astaingegerdm @hopeful33250 @menkcizmar @livefully @kitty2 and others.

While the chronic diarrhea is the main concern you started off with, it sounds like the loss of friendship or changes in friendships is an equally disconcerting "side effect" of chronic illness. I invite you to copy and paste that part of your post as a new discussion in the Just Want To Talk support group here: https://connect.mayoclinic.org/group/other/

I think it is an important topic to not get buried in the discussion about chronic GI issues.

REPLY
@frances007

I have been dealing with chronic diarrhea for months, most likely due to my liver and pancreatic duct dilation. This week I noticed my stools are now orange in color. Nothing I eat will digest properly, including a bland diet. My doctor has ordered more tests. I am exhausted from cleaning my bathroom. I keep a large container of vinegar in my vanity, and last night had 8 episodes of diarrhea. Forgive me for being so forthright.
I am due to see a liver specialist on March 7 2023 and will ask her if my ulcerative colitis has returned, which I understand can sometimes happen. I am feeling very anxious about my disease and subsequent weight loss, as well as other changes that have occurred in my life because I have lost 25 percent of my body weight. While I have gotten used to the "new me", I still cannot get over the fact that so many in my community continue to shun me as though I have the plague.
Friendships have also changed, and this week I received a letter from a very close college friend who flat out told me that she did not think that I understood that she had a demanding job and does not have the time to write letters to me. For many years we had this great letter writing back and forth, and it ended abruptly. I am trying to decide if her letter even warrants a response. Of course I know she works and is "living a full life" as she described to me. I too had a demanding job until I did not.
Someone recently mentioned to me that friendships change when one has a chronic illness, something I never gave any thought to until I became so sick and emaciated looking. I commented to my eye doctor's assistant yesterday that it seemed our world is so lacking in basic humanity, a characteristic I have always been proud of having.
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.

Jump to this post

I am truly sorry for what you are going thru. I have also seen people shy away from others who have been so prominent in their lives before they became ill. I just don't understand how they can be that way - it seems that empathy and humanity have gone out the window. I will keep you in my daily prayers for healing.

REPLY

Have you had a stool elastase test for EPI?

REPLY
@frances007

I have been dealing with chronic diarrhea for months, most likely due to my liver and pancreatic duct dilation. This week I noticed my stools are now orange in color. Nothing I eat will digest properly, including a bland diet. My doctor has ordered more tests. I am exhausted from cleaning my bathroom. I keep a large container of vinegar in my vanity, and last night had 8 episodes of diarrhea. Forgive me for being so forthright.
I am due to see a liver specialist on March 7 2023 and will ask her if my ulcerative colitis has returned, which I understand can sometimes happen. I am feeling very anxious about my disease and subsequent weight loss, as well as other changes that have occurred in my life because I have lost 25 percent of my body weight. While I have gotten used to the "new me", I still cannot get over the fact that so many in my community continue to shun me as though I have the plague.
Friendships have also changed, and this week I received a letter from a very close college friend who flat out told me that she did not think that I understood that she had a demanding job and does not have the time to write letters to me. For many years we had this great letter writing back and forth, and it ended abruptly. I am trying to decide if her letter even warrants a response. Of course I know she works and is "living a full life" as she described to me. I too had a demanding job until I did not.
Someone recently mentioned to me that friendships change when one has a chronic illness, something I never gave any thought to until I became so sick and emaciated looking. I commented to my eye doctor's assistant yesterday that it seemed our world is so lacking in basic humanity, a characteristic I have always been proud of having.
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.

Jump to this post

@frances007
I’m sorry to hear about your ongoing medical problems plus lack of response from your PCP.
I have recently been thinking about how sad it is to lose contact with friends/acquaintances when living with a chronic illness.
I have had continuous GI problems for 13-14 years, some time periods better. Right now I don’t have contact with anyone locally- we moved here 3+ years before I got sick. I had met many women through tennis as well as in the neighborhood- just about everyone retired. Little by little everyone faded away- I didn’t have the energy to keep contact and I wasn’t able to play tennis much.
At one point I tried to get back again and thanks to a woman I had played with before I got into a group again- until Covid arrived and everything stopped. Sadly, the friendly woman died suddenly.
It takes energy to maintain new friendships.
I have contact with a friend from my youth- we write now and then- her life is not easy either.

REPLY
@astaingegerdm

@frances007
I’m sorry to hear about your ongoing medical problems plus lack of response from your PCP.
I have recently been thinking about how sad it is to lose contact with friends/acquaintances when living with a chronic illness.
I have had continuous GI problems for 13-14 years, some time periods better. Right now I don’t have contact with anyone locally- we moved here 3+ years before I got sick. I had met many women through tennis as well as in the neighborhood- just about everyone retired. Little by little everyone faded away- I didn’t have the energy to keep contact and I wasn’t able to play tennis much.
At one point I tried to get back again and thanks to a woman I had played with before I got into a group again- until Covid arrived and everything stopped. Sadly, the friendly woman died suddenly.
It takes energy to maintain new friendships.
I have contact with a friend from my youth- we write now and then- her life is not easy either.

Jump to this post

Yes, losing contact or rather, having "friends" move away from one when they become chronically ill as we have, is a very hard pill to swallow. I am especially sensitive to the behavior of others because I have always strived to be a humanitarian, supportive of others in my community and things of that nature. I am also an artist with a typical "artist" personality which sometimes makes it even harder.
I see my PCP this week and am trying to decide whether to ask him what the purpose of the online message system is if he does not respond to many of my requests. I asked him a few weeks ago if we could increase my antidepressant because I was feeling hopeless and depressed, and he did not respond. I suppose I felt this way because I had to complete a very long questionnaire for the hepatologist I will see in March, and that question appeared on the form, and checked "yes."
Having said this, I will find a new PCP after I see the liver specialist in March, the very same one he told me I would never be able to see. Go figure that one out.
I have some close contacts where I live, one of whom is 84 and I go to her apartment every day, sometimes just to hang out because it is a good place to relax, something I am not very good at doing right now. I have an older sister who lives not far from me, but cannot discuss my medical issues with her because her 73 year old husband has dementia and she is under enough stress dealing with him. I do have another older sister, but 2 years ago she chose to cut me out of her life because of my medical problems. She said she only wanted to talk about recipes and things of that nature. I accept that. As long as I can maintain a relationship with my "big" sister, I am good.
I have other doctors who are very supportive toward me, so I know there will be another primary care doctor who is right for me. I am just dismayed that it has taken so long to get the right care and medical attention I think I need.
Best of luck to you. I really appreciate your nice and thoughtful note to me. Every little thing counts, but your response made my evening. Thank you

REPLY
Please sign in or register to post a reply.