I don't want to settle for IBS-D diagnosis...

Posted by goosetuffs @goosetuffs, Oct 10, 2021

I started having diarrhea when when I was a teenager (12 years ago). I have been on a gluten free diet ever since, since it seemed to help me feel better for a long time. Through the years, my symptoms have been getting worse and my flare ups are more frequent. I have chronic diarrhea, urgency, and colon spasms. My doctor put me on Levsin, which helps when I have stomach pain. I decided to stop taking the birth control pill about 2 months ago to see if that helps my stomach. I noticed a difference for the first month, but now I'm back to feeling awful again. I was given an endoscopy when I was 15, (I'm 28 now) but have had very little testing since. I tested negative for lactose intolerance about 4 years ago. I had a stool sample test done a few months ago, and nothing was found. I found I am B12 deficient, but I now take pills sublingually for that. I basically live off Imodium at this point. I follow a low FODMAP diet with the exception of dairy.

I have an appointment with my GI this week and I was wondering what tests I should ask for or medicines I should request? I've never had a colonoscopy. I just want to feel like a normal person.

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Hi, I suffer chronic constipation and have most of my life. We may be on the opposite ends of the spectrum but it’s all the same, our digestive system. Best thing is find a very very good gastroenterologist. I don’t know where you live but it’s so important to start there. I live in New Hampshire and go into Boston. People ask all the time why I drive an hour and sometimes twice that if I can only get a 9am appointment. Do it. I live next to a state that has some of the best hospitals in the country. I always say why don’t you.
I think lab work which is simple and you need all the basics and more. A simple blood draw can give so much info. It can see inflammation, I go with my list of what I want. You need to get into the mind set that doctors work for you. Your paying them for a very skilled profession. I don’t know what insurance you have but if it’s covered, you want it. I think I’d push for a colonoscopy and endoscopy done together to start. That can really tell a lot and hopefully between those two tests and many labs it will get you in the right direction. Maybe after those they may do other tests. You have to learn to be your own advocate. That is very hard for so many. First, not sure where you live but seek out the best hospital Gastro department because most states are only booking beginning of next year. If you see your pcp with severe stomach pain they won’t order even a stomach ultrasound? Sorry your feeling this way. So many of us suffer diarrhea or constipation and it wrecks such havoc on our lives. Hang in there. All the best, Joanne

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Try to get to a bigger hospital like Mayo Clinic ( there is main In Minnesota), one in Jacksonville FL ( I just got back from after 5 other Gastro Drs ), one in Scottsdale AZ ( not rated as high as other two ). Not sure where you live ( Cleveland Clinic main also great ), John Hopkins in MD . You need to first find a great hospital and Dr.
Mayo Clinic Jacksonville was great .
Unfortunately my tests all came back same as before . So I’m back to square one After 7.5 years of chronic digestive disorders.
I’m glad I went because I just had to see . Have your current Gastro Dr. send referral to one of those hospitals. Took me 7 months to get televisit. Yes get the endoscopy and colonoscopy done together if possible.
Any other tests will be done ✅ within your days there so it’s one trip . It’s not easy .. I feel for all of us .
Praying 🙏 for you , Rosemary

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I really feel for you and this is new to me after a major spinal surgery 6 months ago. I let it go and finally saw my Doc. I had the colonoscopy and it revealed, with a biopsy, Crohns Colitis. This sucks! However I’m working through it. I think you should get the procedure.

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@goosetuffs – I don’t have anything to add to Joanne’s and Rosemary’s posts except to tell you not to give up.
I have both the history of diarrhea and pain and nowadays constipation.
After local GI gave up on me I went to Mayo, Jacksonville. I kept going until I got a diagnosis and plan for treatment. Even at Mayo I had the feeling they got tired of seeing me! I’m glad I kept going because finally there was new medical information that applied to my problem.

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This sounds so much like me. Took 8 years of ER visits, living off Imodium and B12 deficient. I went gastro to gastro demanding another endoscopy. Was told no, I had one already in less than ten years, mine was a little more than a year, but I knew something was wrong.
I finally found a gastro who actually got it and did it for me. Found so much more than the last one did. Have them look for pernicious anemia in blood labs. They found AMAG during my endoscopy, they did a colonoscopy as well. Thank GOD someone looked and found it. They were shocked. My suggestion is, make them do it. If they refuse, find another. I was told I was crazy by so many. Well who is crazy now! Listen to your body and be your own advocate. By the way, I waited two years for my docs to get me into Mayo. I called once a month and pleaded my own case and I got myself in after my test showed what they did. Never give up and fight for yourself.
Make sure to have your labs for pernicious anemia. Fight for the colonoscopy/ endoscopy or the smart pill! Best of luck to you!!!

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@mothermary1

Hi, I suffer chronic constipation and have most of my life. We may be on the opposite ends of the spectrum but it’s all the same, our digestive system. Best thing is find a very very good gastroenterologist. I don’t know where you live but it’s so important to start there. I live in New Hampshire and go into Boston. People ask all the time why I drive an hour and sometimes twice that if I can only get a 9am appointment. Do it. I live next to a state that has some of the best hospitals in the country. I always say why don’t you.
I think lab work which is simple and you need all the basics and more. A simple blood draw can give so much info. It can see inflammation, I go with my list of what I want. You need to get into the mind set that doctors work for you. Your paying them for a very skilled profession. I don’t know what insurance you have but if it’s covered, you want it. I think I’d push for a colonoscopy and endoscopy done together to start. That can really tell a lot and hopefully between those two tests and many labs it will get you in the right direction. Maybe after those they may do other tests. You have to learn to be your own advocate. That is very hard for so many. First, not sure where you live but seek out the best hospital Gastro department because most states are only booking beginning of next year. If you see your pcp with severe stomach pain they won’t order even a stomach ultrasound? Sorry your feeling this way. So many of us suffer diarrhea or constipation and it wrecks such havoc on our lives. Hang in there. All the best, Joanne

Jump to this post

Thank you for the advice, Joanne. I really appreciate it! I live about 2 hours away from the University of Michigan, so I will try getting an appointment with a GI there! I'm definitely better about being my own advocate now then I have in the past, and I'll continue to push for answers.

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@rozy288

Try to get to a bigger hospital like Mayo Clinic ( there is main In Minnesota), one in Jacksonville FL ( I just got back from after 5 other Gastro Drs ), one in Scottsdale AZ ( not rated as high as other two ). Not sure where you live ( Cleveland Clinic main also great ), John Hopkins in MD . You need to first find a great hospital and Dr.
Mayo Clinic Jacksonville was great .
Unfortunately my tests all came back same as before . So I’m back to square one After 7.5 years of chronic digestive disorders.
I’m glad I went because I just had to see . Have your current Gastro Dr. send referral to one of those hospitals. Took me 7 months to get televisit. Yes get the endoscopy and colonoscopy done together if possible.
Any other tests will be done ✅ within your days there so it’s one trip . It’s not easy .. I feel for all of us .
Praying 🙏 for you , Rosemary

Jump to this post

Thank you so much! If my GI doesn't start giving me tests, trying out more meds with me, etc. I will try to get into the Mayo Clinic. I appreciate the advice!

REPLY
@chefmike2010

I really feel for you and this is new to me after a major spinal surgery 6 months ago. I let it go and finally saw my Doc. I had the colonoscopy and it revealed, with a biopsy, Crohns Colitis. This sucks! However I’m working through it. I think you should get the procedure.

Jump to this post

Thank you! Glad you got an answer and are working through it!

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@astaingegerdm

@goosetuffs – I don’t have anything to add to Joanne’s and Rosemary’s posts except to tell you not to give up.
I have both the history of diarrhea and pain and nowadays constipation.
After local GI gave up on me I went to Mayo, Jacksonville. I kept going until I got a diagnosis and plan for treatment. Even at Mayo I had the feeling they got tired of seeing me! I’m glad I kept going because finally there was new medical information that applied to my problem.

Jump to this post

Thank you so much! I will continue to push for answers. 🙂

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@goosetuffs

Thank you for the advice, Joanne. I really appreciate it! I live about 2 hours away from the University of Michigan, so I will try getting an appointment with a GI there! I'm definitely better about being my own advocate now then I have in the past, and I'll continue to push for answers.

Jump to this post

The one thing that has helped me is these blogs of advice and strength from total strangers. I’ve been desperate, scared and I’ve felt crazy. Everyone has given be more courage and advice here than any doctors office. It’s a true pleasure to get these from people who are unfortunately suffering like myself, others who mentor to help you get through those moments you don’t understand and just people who take time to help you. I know I have a big decision about getting surgery come January but right now I’ve got lots of friends who lend an ear and I’m blessed. We are here for you too for the long run.
Feel better. Big HUG…Joanne

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Funny, I’m driving to Michigan to take my grandson to the Northwestern game. Now I’m scared to make the trip. I’m hoping I can take my 2 week driving trip and not get a flare up. I’m really starting to doubt myself about this. He will be disappointed and I will be heartbroken. Just don’t know which way to go.

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Mike, not sure if you’ve been on a good streak. I live in New Hampshire and I just take one day at a time. I’m meeting my son and grandson and his wife in Disney for thanksgiving week. I’m very nervous but I bought trip insurance and I’ll be in the US if I need a hospital. I feel for me it will be tough. Flying can cause my constipation to get worst and I won’t be eating much in case I can’t have a bowel movement. I’ll be there one week. But, I’m tired of this running my life so I’m going. I’ll be very well prepared. Follow your heart and how your body feels. Best of luck, Joanne

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