IBS-C (irritable bowel syndrome with constipation)

Hello @livefully, I do agree with Lori, @loribmt, about your laugh-out-loud post about the squatty potty. It was really delightful!

I went to a pelvic floor therapist and heard about it from her. I didn't have the courage to go buy it. Maybe I'll do the online order.

Here is a link where you can find other discussion groups on Connect, https://connect.mayoclinic.org/groups. I hope you can find some other discussions to be a participant in.

Thanks again for joining Connect. If you care to share: what brought you to Connect?

Hi Lori,

So glad you enjoyed it. I figure laughter is the best medicine and if I can laugh about things, then I'll just keep getting better and better. Gracious, Ive had enough poop trauma and all other sorts of challenges that at some point you just have to laugh about it all.. its too unreal and your like "nobodys gonna believe this" so you at some point just have to laugh. Yeah, IBS is one of my diagnoses.. I got that diagnosis at age 17 which has been eons ago. (yikes!). Over the years, Ive been diagnosed and misdiagnosed with a lot of stuff. It's been a trip! Mayo is my 3rd research hospital and light-years different from anything I've experienced so far. Its been a great experience so far. It feels like my life has been one long process of physical challenges.. Ive experienced lots of bad medical care along the way but also some really great medical folks and care for which Im grateful. In the meantime, Ive also done everything I can think of to support health - you name it, I feel Ive done it. Clay baths, supplements, detox whatever, vegan, vegetarian, Paleo, grass-fed meats, sweat baths, etc etc. When your told over and over that you are "complicated" and "hard to figure out the medical" you tend to try anything you can on the side to help. When you also collect a gazillion diagnoses its like "forget it, I'll figure it out myself" (which is a joke). It was my stepbrother and physical therapist who encouraged me to give the medical field one more go of it and they suggested Mayo. So, my sister and I packed up the car and I called Mayo and was like "here I come ready or not". 🙂 For my upcoming third trip to them, I have a muscle biospy and in the meantime, after seeing 4 other departments there, Im working with the Integrative department. My challenge is gaining and keeping on weight. Mayo did figure out I have EILO (exercise-induced laryngospasm) and working with the speech therapist at Mayo, Ive got that more under control now which has been life-changing. Apparently my left vocal cord is smaller than my right which is quite the fun... The muscle biospy will tell us if there is a neuro component going on and if not, then the issue lies in the gut field. In the meantime, theyve had me start on the elemental diet and from there I'll transition to the SCD diet. Thats to get my SIBO under control. I keep struggling with SIBO which keeps me in a constant state of malnutrition. The bright side out of it is that Ive learned to become a really, really great alternative cook. I can make some mean mouth-watering meals. I will do anything to keep weight on.
I found Mayo Connect through the Mayo website. I tend to get crusty when folks try to tell me the latest "cure" or thing I should do. Im like "um, no way. Unless youve dealt wtih it yourself and are completely legit you just take your crazy ideas and head back the way you came". I figured people who post on Mayo connect are real patients who actually deal with the stuff so that was a plus. And I figured they were legit with it being Mayo and all. That was a huge draw. So here I am, pouring through the different forums and posts and gleaning info.
In the meantime, I enjoy writing. If I can write something from my experiences that makes me laugh and others laugh, then I figure the holy heck of whatever that experience was had some silver lining to it...
Cheers to you and thanks for the welcome. 🙂

Thanks Teresa for the welcome and the link! Do try the squatty potty. Ive never gone to a pelvic floor therapist but good to know they recommend it to. Lori was really swell and welcomed me also.. I replied to her telling her what brought me to Mayo connect. I'll let you read that versus me retelling it all. Glad to be here and thanks again for the welcome. 🙂

@livefully You’ve certainly been through the wringer over your lifetime with ‘belly wankers’ as our family calls anything to do with guts and entrails…

Thank you for sharing your journey with us!! Your experiences, diverse diagnoses and the way you’ve handled all of the life challenges with such aplomb shows a testimony to your strength and resilience. You truly deserve a gold star for your wonderful sense of humor through all of this.

I’m so happy you found the Mayo Clinic. It really is a medical organization unlike anything else and sets the standard of health care. It’s a shame not every medical experience is as positive. The collaborative medicine and integrated medicine approach to treatment and patient well being is the pinnacle of care. I call it being Mayo-naised. ☺️
Every time I return to ‘the mother ship’ the calming, quiet sense of assuredness from my doctors and the entire medical staff lets me know I’m in the best possible hands and there is hope.

I’m also happy, as are others, that you’ve found Mayo Clinic Connect. Yes, most of us are patients or caregivers looking for answers, a shoulder to lean on, encouragement and that all important word again, HOPE.
It’s great you’re perusing all the groups because the experiences and insights from your life journey, are of great value across the forum, along with your great sense of humor and positive attitude.

Which campus is your Mayo provider?

I go to the Flordia campus. I can't speak highly enough of the sleep, neuro, integrative, ENT, and speech therapy departments there. They are hands down amazing. On my first visit, during the last meeting of the last specialist (I saw all 5 departments on my first visit there..), at the end of the meeting with him, he ended it by giving me a really beautiful pep talk then putting a rock in my hand. When I turned it over it had the word "believe" etched into it. He said that on the days that are rough, and I struggle to believe things will physically get better, know that he and all of my care team at Mayo will believe for me. I about cried. That's when I knew that Id found really great care. That and the fact they all listened to me and worked collaboratively to problem solve was stunning. It really was a beautiful experience that gave me hope. It felt so great to feel hope. Yeah, I've carried that rock in my pocket every day since.
I'd like to claim I'm strong and resilient but truth is, it's my Mom and Sister and my physical therapists who I've worked with for 27 years that have carried me. If it weren't for them, I'd have given up a long, long time ago. I could write a book about all of the stories and in each story, you would see that it's those folks that have pushed me on. I can see my Grandmother smiling and whispering to me "It was Providence my dear. He knew what you needed.". Id have to agree and its at those moments that I have to whisper a thanks to God.

Speaking of Florida, its fun to go there cause its like a mini-vacation in a way. If you go to the Mayo there, do you have particular places you recommend staying at? We've tried some VRBOs so far and enjoyed one of them a lot. Is there a thread/posts on places to stay for the FL one? I have looked but havent found one so far.

I go to the Flordia campus. I can't speak highly enough of the sleep, neuro, integrative, ENT, and speech therapy departments there. They are hands down amazing. On my first visit, during the last meeting of the last specialist (I saw all 5 departments on my first visit there..), at the end of the meeting with him, he ended it by giving me a really beautiful pep talk then putting a rock in my hand. When I turned it over it had the word "believe" etched into it. He said that on the days that are rough, and I struggle to believe things will physically get better, know that he and all of my care team at Mayo will believe for me. I about cried. That's when I knew that Id found really great care. That and the fact they all listened to me and worked collaboratively to problem solve was stunning. It really was a beautiful experience that gave me hope. It felt so great to feel hope. Yeah, I've carried that rock in my pocket every day since.
I'd like to claim I'm strong and resilient but truth is, it's my Mom and Sister and my physical therapists who I've worked with for 27 years that have carried me. If it weren't for them, I'd have given up a long, long time ago. I could write a book about all of the stories and in each story, you would see that it's those folks that have pushed me on. I can see my Grandmother smiling and whispering to me "It was Providence my dear. He knew what you needed.". Id have to agree and its at those moments that I have to whisper a thanks to God.

Speaking of Florida, its fun to go there cause its like a mini-vacation in a way. If you go to the Mayo there, do you have particular places you recommend staying at? We've tried some VRBOs so far and enjoyed one of them a lot. Is there a thread/posts on places to stay for the FL one? I have looked but havent found one so far.

Hello, @livefully This is such a beautiful story about your journey with Mayo Clinic and the specialist who gave you the greatest gift of hope with that rock…to believe. I have tears and goosebumps. I share your overwhelming sense that everything will be ok when I’m in the hands of the incredible medical teams at Mayo Clinic. I never lost one moment of sleep once I was delivered safely into their hands. The collaboration between doctors and departments, achieved with a sense of camaraderie instead of chest thumping, is truly special. It gives us the best of the best all working together to find solutions for a positive outcome.

As for giving all the credit to your amazing family, doctors and therapist, you do yourself a disservice because as much as they lifted, supported, and carried you, your own sprit of endurance kept you going through years of adversity. You’re very strong and resilient and need to realize how capable you are. And as for the books…I hope you give that some consideration. You’re a powerful writer.

I’m sorry that I can’t help much with personal experience with Jacksonville, My campus is Rochester. But feel the same way you do about it being a mini vacation. I had to relocate there with my husband for 4 months with my transplant. So we got very familiar with the campus and the beautiful city and visit now, every 3 months. I’ll be heading there this Monday for a full day appointments and tests to celebrate my 2nd re-birthday. ☺️

This is a link to our Connect discussion group about Jacksonville.
https://connect.mayoclinic.org/discussion/lodging-in-jacksonville-fl/
https://www.mayoclinic.org/patient-visitor-guide/florida
When is your next visit to Mayo?

Ok..first don't laugh at this because it DOES sound funny. Also this is NOT a commerical. This is my own personal experience.

I was just in the bathroom and a light bulb went on. I should tell you all about...wait for it (and don't laugh)...the Squatty Potty. Oh gosh even I'm sitting here laughing. Why the heck did they name it that. Here's the story. I was in a having a LOT of problems with IBS with constipation. I had had a colonoscopy and an endoscopy and the doctor was touting fiber with a little advice about diet. Ok...so there I was trying to get myself so I could go to the bathroom without straining really hard and causing other problems. I discovered fiber was not for me but MiraLAX/ClearLAX worked well but still there was quite a bit of straining.

One night my husband and I were channel surfing looking for something to watch when we saw this crazy product on a program called "Shark Tank". These people had come up with a foot stool that wraps around the base of your toilet so it's not in the way. When you want to have a bowel movement you just pull it out and put your feet up on it. I hope I use the write terms to describe this correctly.They showed a diagram of how there's a bend in the lower end of your colon that your stool (note the foot stool...the poop stool) has to maneuver before evacuating. They said by putting your feet up you straighten that bend out so your stool can more easily just slide out. I watched and thought it was hype but they started giving some medical info and my husband said I should do a little research and check it out. By the way...the blonde chick on that show became partners with them and they're making a killing now on those foot stools.

First I went to Amazon to see if they were sold there and they were. I started reading reviews written by recent verified purchasers ONLY. The numerous reviews were very positive. It was being sold as an Amazon Prime item so I knew I had nothing to lose. If I didn't like it I could return it free of charge. After a little more research I decided to try it. OMG....IT WORKED!!!!!!!!!! It was amazing. At the time I first tried it, I was having bowel movements. It's just it was kind of hard to get them out. I put my feet up on that stool as directed and within a minute or so I was done without straining. I yelled to my husband..."honey, you won't believe it. I just pooped and it didn't hurt"....lol. I've been using it ever since and wouldn't be without it. Now this stool does NOT keep you from getting constipated. That's diet and the things your doctor tells you to do. This just makes it SO much easier to go. I don't strain any more. I HIGHLY recommend anyone with bowel issues tries one of these things. It's so worth every penny.