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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My story is similar to yours. By a miracle this year, I got into Mayo in FL. Went to several departments who all worked together and I found help with them all but for my GI challenges, I found help with the Integrative Department there. Have worked with them for awhile now and they discovered I had pernicious anemia, low on vitamin D, anemic, have fat malabsorption, and something called "latex cross reactivity". Apparently, those things create a perfect GI storm. They have been AMAZING to work with. I came to them not knowing I had all this as I had been misdiagnosed with so much other stuff including IBS. They are like detectives and have been working to "solve the puzzle". I work with a nutritionist there and an integrative doctor and over time (since Jan 2021), working with them and the treatment plan they developed, my GI challenges have drastically improved. As they discovered the misdiagnoses and then worked to figure out what was really wrong, they would tweak my treatment plan and then monitor me to see how I reacted. I am out of state and work via telehealth and the patient portal with them and then go down here and there for in person visits. I just got a new local doctor (mine retired) and my new local doc was like "wow… nobody but Mayo would ever have figured this out your case was so complex". I highly, highly recommend the Mayo Clinic. They listened, then worked as an integrative team to help me. The best part is they took me seriously and then worked to diligently solve this versus giving me a pat answer or "oh well" or "its just your body" or "well you are a female" or any of those standard answers. The Integrative Department will probably refer me to the GI department there but I like that before they do that, they have worked to figure things out. I dont know that anyone else would have figured out that I had latex cross reactivity. I had tried everything over the years to help (vegetarian, vegan, paleo, SCD, low food map, etc etc) and it helped to a degree but then the effects wouldnt last. The treatment program they have me on actually works. The number of the Integrative Department at the Mayo in FL is 904-953-0951. I see Dr. Perlman. After me fighting for help for years and getting loaded with a ton of misdiagnoses, it has been amazing to work with medical folks who actually work with me and work to figure things out. My physical quality of life is so much better since I started their treatment plan. Its amazing not to be sick and malnourished and and and… all the time. Literally, these folks have helped me attain a quality of life that I used to dream of. Call and see if you can get an appointment and if not, get on the wait list. .

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@livefully

My story is similar to yours. By a miracle this year, I got into Mayo in FL. Went to several departments who all worked together and I found help with them all but for my GI challenges, I found help with the Integrative Department there. Have worked with them for awhile now and they discovered I had pernicious anemia, low on vitamin D, anemic, have fat malabsorption, and something called "latex cross reactivity". Apparently, those things create a perfect GI storm. They have been AMAZING to work with. I came to them not knowing I had all this as I had been misdiagnosed with so much other stuff including IBS. They are like detectives and have been working to "solve the puzzle". I work with a nutritionist there and an integrative doctor and over time (since Jan 2021), working with them and the treatment plan they developed, my GI challenges have drastically improved. As they discovered the misdiagnoses and then worked to figure out what was really wrong, they would tweak my treatment plan and then monitor me to see how I reacted. I am out of state and work via telehealth and the patient portal with them and then go down here and there for in person visits. I just got a new local doctor (mine retired) and my new local doc was like "wow… nobody but Mayo would ever have figured this out your case was so complex". I highly, highly recommend the Mayo Clinic. They listened, then worked as an integrative team to help me. The best part is they took me seriously and then worked to diligently solve this versus giving me a pat answer or "oh well" or "its just your body" or "well you are a female" or any of those standard answers. The Integrative Department will probably refer me to the GI department there but I like that before they do that, they have worked to figure things out. I dont know that anyone else would have figured out that I had latex cross reactivity. I had tried everything over the years to help (vegetarian, vegan, paleo, SCD, low food map, etc etc) and it helped to a degree but then the effects wouldnt last. The treatment program they have me on actually works. The number of the Integrative Department at the Mayo in FL is 904-953-0951. I see Dr. Perlman. After me fighting for help for years and getting loaded with a ton of misdiagnoses, it has been amazing to work with medical folks who actually work with me and work to figure things out. My physical quality of life is so much better since I started their treatment plan. Its amazing not to be sick and malnourished and and and… all the time. Literally, these folks have helped me attain a quality of life that I used to dream of. Call and see if you can get an appointment and if not, get on the wait list. .

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ps. your right not to settle. Do not settle for a diagnosis of "IBS". Get with medical folks who will figure this out for you. I shudder to think where Id be had I not gone to Mayo. The journey to there is hard and it was discouraging at times and if it werent for my family and friends and faith, I wouldnt have made it. So, keep strong and keep fighting for health. You have a right to a physical quality of life so dont settle for less than that!

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@chefmike2010

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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@chefmike2010. Hi Mike. My belief is that we have to live our lives. We can't live in fear of the "what if's".
After all, we only get one life to live, and we should live it to the full.
I encourage you to take that awesome trip with your grandson. He'll remember that forever, as a very special and precious one-on-one time he got to spend with his grandfather. And you'll be very happy you put your fears aside and DID it!
Warmest wishes, Laurie.

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Hi Laurie: Thanks for the good advice. I postponed until Spring and gave him the football tickets I was going to surprise him with. He is happy I postponed so I can get over this flare up and looks forward to some warmer weather fun in the Spring. Thanks again. Mike

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@mothermary1

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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Absolutely! It always feels better to know that you're not going through this alone. Best of luck to you! 🙂

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@gastrogirl

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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Sorry, I missed your comment! Thank you so much for the advice and I'm so happy to hear that you found a doctor that was willing to listen. My new doctor is taking me seriously and I have a colonoscopy scheduled for Tuesday! If I've learned anything, it's that you have to be your own advocate.

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@livefully

ps. your right not to settle. Do not settle for a diagnosis of "IBS". Get with medical folks who will figure this out for you. I shudder to think where Id be had I not gone to Mayo. The journey to there is hard and it was discouraging at times and if it werent for my family and friends and faith, I wouldnt have made it. So, keep strong and keep fighting for health. You have a right to a physical quality of life so dont settle for less than that!

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So sorry that I missed your comment! Wow. I'm so glad that they were able to help you and get to the bottom of your illnesses. It's ridiculous the lengths patients have to go through to get a diagnosis and start feeling better. I have been seeing a new doctor who is trying out different medications with me (no luck so far) and he scheduled a colonoscopy for me on Tuesday! I've been dealing with stomach issues for 10 years and no other doctor would give me a colonoscopy because I'm "young" and I "look fine." If I don't receive any diagnosis/improvements in my symptoms within the next few months I will definitely try to get into the Mayo Clinic. I'm having a very rough day today, flare wise, so your comment really means a lot. Thank you. 🙂

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Mayo definitely gave me hope. I got so tired of living with one foot in the grave and one barely in life. Having physical challenges to this degree saps you of life. Mayo brought their experience and knowledge to the table, I brought my journey, and they partnered with me to brainstorm and help. I had been to so many specialist (cardiologist, neurologist, gastros, etc etc) including Duke Univ and it was Mayo where I found hope. They recently came to me and said they think the root of it all is something called CSID (congenital sucrase isomaltase disease). They have a plan to go about this versus leaving me with a pat on the back and a "good luck". The other specialists and then Duke were like "oh your tests results arent normal", then "they are normal", then "its really weird and now not normal but today you look fine so Im sure your good". Or it was "wow.. .this is bad but good luck" or "oh, its normal so you must be fine now". The thing I hear from Mayo is an authentic plan and thats the difference.

Im glad to hear that your new doc is taking you seriously and scheduling a colonoscopy for you and hopefully it will give answers. I had my first colonoscopy done at age 17. It came back awful and started a journey for me that lasted a long time and included years of having to learn to educate myself and also learn how to be a better advocate for myself. If you dont get a plan from the doctors, just move on and Id encourage you to try Mayo. Type up your medical history (symptoms, diagnoses, treatment, etc).. keep it non emotional but just lay it all out. Then present it to Mayo. By the time I was 20, local doctors had me on 6 medications (including pain killers), by the time I was in my 20s it was "youll be an invalid by age 30" and by the time I was early 30s it was "we'll help you as you die". That is unacceptable and I fought back, asking questions, challenging diagnoses, asking for data, researching like crazy, and demanding a treatment plan. In the meantime, I tried every diet known and it feels like every herb out there. I didnt just passively sit and take it. I wish I had had Mayo from the get go because it would have been so different at such an earlier age for me. The quality of life I have now after just 11 months with Mayo leaves me in awe and its because from the get go, they respected me and my symptoms/story/journey and sought to work with me. You know your body best and if your not getting help, advocate, advocate, advocate for yourself. Research, ask questions, challenge diagnoses, be respectful yet intentional. If you dont get results that give you a quality of life, then seriously think about Mayo. My journey started in third grade and now, at age 45 Im finally getting the quality of physical life that I used to dream of. Its possible so do not give up hope! Keep your dream front and center and pursue it with intentional focus. There are medical folks out there who will partner with you and it will be life changing. For me, they were at Mayo and I will be forever grateful to my team there. I met with my doctor there today for a visit and he said to me instead of living one foot in the grave and the other barely hanging on, the goal is for both my feet to be permanently and solidly "in life". Thats just so incredible to hear from a doctor versus "oh your a little better now so you are good to go" when the reality is, your not better and still sick.

So, keep pushing forward to your dream and goals in life. My best to you.

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