@bentley33 Hi, Bentley, and welcome to Connect. As I suspect you realize, we are all patients here, sharing information about various health problems, but without giving any real medical advice.

My question to you is, where are the doctors you have been dealing with? I live outside of Manchester, NH and had a slew of symptoms that went undiagnosed for almost a year and a half. Finally, a suggestion was made by one doctor and sure enough, that proved fruitful. It turned out I had non-alcoholic cirrhosis. With that diagnosis, I headed to Boston, and ultimately had a liver transplant. Over time I came to realize that my symptoms all pointed to cirrhosis, yet no one put the pieces together.

I know now that if I ever have a problem that is not diagnosed in a reasonable amount of time here, I will get myself down to Boston to MGH (Mass General Hospital). If you have not been to a major medical center, preferably a teaching one, then please do go to one.

I hope that some doctor will be able to put 2 and 2 together and give you the help you so badly need. You sure have been through a lot.
JK

Thank you. My GI doctor is in Omaha NE. I have been to the University of Iowa and also the Mayo Clinic in MN. That was a few years ago.
I’ve usually been able to know my body and when I have a “flare up” of whatever I’ve been able to work it out. But this is different and has been lasting for months. The bloating and bruising is new and honestly scary. I have thought of packing it up and going to a major hospital to get answers, but being a single mom who can barely make it through the day makes it tough. I will mention the diagnosis To my doctor and see what the have to say. Thank you very much for listening and the suggestion. It’s been an absolute struggle. Thank you

I’m not writing to give advice, as I am in the same boat as most on this site, but what I can do is commiserate and tell what I’ve tried and what I’m still trying.

Surgeries: Appendix, kidney stone removal, 2 atopic pregnancies ( that’s when the fertilized egg gets caught in the fallopian tube and starts growing there. Immediate fallopian tube removal is required), c-section ( invetro twins), gall bladder removal, scar tissue removal (but as we know, it grows back twice as much when removed), and an ERCP which led to pancreatitis. I have a redundant ( tortuous) colon where a colonoscopy can’t be done and most recently, after searching years for an answer to this lower pelvic pain (keeps me up literally all night long), I was diagnosed with Pelvic Floor Dysfunction. PFD IS THIS: your pelvic floor is like a sling that holds your intestines in place, as well as your spine. The pelvic floor is also attached to your hip bones. When your pelvis is weak and starts to drop your intestines become misaligned. I’ve been told It probably began with pregnancy ( I was 110 lbs and gained 80 lbs with the twins. They are 19 now). PFD symptoms: bladder leakage ( I don’t have this),constipation, lower pelvic pain, extremely painful intercourse, unexplained back pain. I have 4/5 of the symptoms. And men can get this as well, although not as common as with women.

Between the tortuous colon, the massive amount of scar tissue, and the pelvic floor dysfunction, i have horrible back, hip, and pelvic pain, and major bathroom issues, which I’m going to call IBS because I don’t know another word to use. What I go through on a daily basis with my stomach can’t be described in words or on paper. I have eliminated most foods because eating makes things worse, I’ve lost many friends because of this, and I have tremendous guilt because my wonderful husband shouldn’t have to deal with me.

About 2 months ago I got sick. I lost 12 lbs, which put me at 93lbs. I’m 5’4”. I had to take a leave of absence from work ( going back in about 3 weeks, and with 2 kids in college it’s the worst timing ever), I’ve gone through several back epidurals, going through PT for the pelvic floor 2x a week ( It’s not your normal PT. It’s very invasive and emotional); which includes internal vaginal injections every 3 weeks. I do home exercises and stretches, acupuncture 2x a week, a psychologist 2x a week, I’m having my first nutritionist appointment today because I can’t gain any weight back and eating scares the crap out of me because I get such bad stomach pain, and I’m trying to find a psychiatrist that takes insurance because pain management ( really, and this is their job) and my internist are both uncomfortable prescribing pain pills. I take different pills at different times for different issues. There’s more, but I think my point is taken. You’re not alone.

To answer your question, yes you try everything. PT, acupuncture, whatever. This way no one can ever say “well the dr said to do this and you didn’t want to listen”. I’ve just began acupuncture. I’ve been told you will notice the effects after 2x a week for 6 weeks. I’m on week 3. Right now I believe it to be hocus pocus. People look at me like I’m crazy ( at least that’s what I think. It could all be just in my head), you’re made to think that you’re a drug seeker because you stress at the Dr’s office when they dont prescribe enough pain medication to get you through a month. Perhaps if I call them every hour on the hour during the day and especially at night due to the pain they’d understand. I’m exhausted as all of you out there, yet I have to keep smiling for the people around me because who wants to be around Debbie Downer, when in truth, I’d like to just sit in my bed, watch tv, and be left alone.

Until modern medicine is equipped to handle people with multiple issues simultaneously, physically and emotionally I personally see no way out, but it’s nice to know I’m not alone out there.

My saying is 1 step forward, 3 steps back, followed by the song “ I get knocked down, but I get up again. You’re never gonna keep me down”, by Chumbawamba. At least this makes me laugh, along with The Big Bang Theory.

@bentley33, I noticed that you mentioned that you "have found a GI doctor that has read ALL my medical records and sticks by me". I see that as a potential glimmer of hope for you. For example: I was treated by my local GI for 7+ years for a rare liver disease. He had a colleague (liver specialist) who practiced 90 miles away at a major hospital. These 2 fine gentlemen communicated via phone about my condition. I did need to drive to an appointment (90 Mi) on 2 occasions.
Do you think that such a solution is possible in your case? If you haven't done so, would you consider asking about it?

You have a beautiful son.

Hello @bentley33, @eppie,

It’s rough dealing with such ongoing symptoms and must seriously affect your quality of life; I’m so glad to see that you’ve "connected" with some of Connect’s stellar Mentors, and other members. I’d also like to invite @ginpene05 @sandyabbey @heid @nonnie1 @ron22 @kag13 @carolhope @sita @michrn @jljacoby to join this conversation as they’ve discussed similar digestive/GI issues, and may be able to shed more light.

You might be interested in viewing these discussions as well:
– Tips for managing chronic Small Bowel Obstructions https://connect.mayoclinic.org/discussion/tips-for-managing-chronic-small-bowel-obstructions/
– Redundant / Tortuous Colon https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

Yes, I am having PT and doing stretches for PFD. The PT is awful and the worst of it hasn't begun yet. Eventually the PT that's going to be done is called bio feedback. It's totally not for the weak minded. Luckily, most of the time, i'm able to makes jokes during the PT because it's humiliating process so finding humor in what's being done is the best way for me to get through it. Unfortunately the nights of the PT im up all night in pain. Definitely not laughing at 3 AM.

No. First it starts With trying to stretch the pelvic floor muscle internally with the therapists fingers inside you. While that’s going on she has to literally teach me to breathe correctly so I can move her finger with my pushing. Sometimes I can move it, sometimes not. I began PT in October. After 4 rounds of vaginal trigger point injections, this past Tuesday was the only time the therapist was able to do anything internal because it was too painful. When this portion improves the bio feedback will begin.

Bio feedback happens 2 different ways. The first is when the therapist will insert ( I forget the medical term for it) a dildo like object inside to stretch the pelvic muscles while I work on trying to push the object out.

The 2nd part is the real fun one. I will get to sit on a chair with a probe inserted into my anal canal while being attached to a monitor. I will be instructed at that point on how to breathe and reteach my muscles to push out instead of in. The monitor will interpret the strength of my pushing.

I find it hilarious when people say , oh, I’ve heard of PFD. Isn’t that where you have to do kiegle squeezes. My response is usually “yeh, that’s what it is!” It reminds me of when people used to stop me with my beautiful twin BOY and GIRL, whom look nothing alike. So many morons out there looking at these 2 adorable babies asking if they’re identical twins. I finally just started saying yes, of course my BOY and GIRL are identical twins. Can’t you tell?

Hey Bentley, I happen to live here in MN and Mayo may be my next step as well. You do get to a point where you'd do anything....ANYTHING for relief and gain back some quality of life. For me it all started with gallbladder removal 5 years ago. Episodes would come and go with stents in the bile duct giving me temporary relief. I had a reputable doctor at the U of MN do this, Martin Freeman is his name. My last stent placement was back in January and that time did nothing to help, so they got pulled 6 weeks later as they can clog up. Bile reflux is the suspected DX as this is the only test (endoscopic ultrasound shows it all over my stomach) that has come back with a red flag. Like you, I have tried many medications, some that cause side effects to warrant the need for an additional medication. Not a long term plan, so I am meeting with a GI surgeon tomorrow to see what can be done. I say if the surgery can help me gain back even 50% if what I have lost for quality of life, lets do it. I know folks who have had stomach portions removed, and intestines shortened when they thought nothing would help them. Both improved though. It seems like your visit to Mayo was long enough ago to be worth considering with a new GI there. Every celebrity that comes into MN for something always ends up going down there for a check up, must be a reason!

Hello friends, it’s been awhile since I’ve checked in. I’m just having the worst time and finding no relief. I think my GI doctor has done all the testing he can and the options are not great. He’s still trying but running out of options.
A quick recap (hopefully I don’t forget anything)
I have Crohn’s, Gastroparesis, IBS with constipation, slow transit colon (not sure that’s the technical term) SIBO, massive scar tissue, blockages, obstructions, severe bloating, EOE. I’m sure I’ve forgotten something, it sucks when your list of health problems is longer than your grocery list😔
I’ve tried lots of things (see previous posts) I tried all herbal including medical cbd and THC, I’m not sure if it’s making things worse or not. Tried Acupuncture. I’ve lived with the stomach pain basically my whole life, but the constant vomiting is making things really hard.
NG tube, temporary bag (to give my insides a complete rest), and waiting for a major obstruction and then maybe a risky surgery.
As I’ve stated many times my GI doctor gets it and me and doesn’t push me aside because the test results come back normal, although throwing up 4-5 days a week(sometimes more) run show something that they really can’t do anything for, or testing and finding nothing🙄
I’m exhausted and wondering if I should get a 2nd opinion from Mayo before tubes and bags start happening. I’m a single mom and feeling like a let down to my son. I want and need to get better for him and myself.
I guess to sum things up: where do I go from here? ??????? It’s been a year that I have been struggling with “episodes” and I’m no better.
Feeling lost and helpless. Suggestions, tips, advice are very much welcome and appreciated.
I hope everyone is doing better or have found things to help you feel better. I pray for all of you, this struggle is real for each and everyone of us.
I feel like I’ve lost direction, nothing works.
If it’s nit asking to much, I’d appreciate feedback on suggestions as what to try or do next.

With Mayo, yes it takes a few months to get in. It took me 3 months from the time I did the on-line deal and such to schedule an appointment at the GI clinic. Mine is coming up mid September. I guess quality of life comes into play when looking at risks of surgery or something more invasive. Being sick and in pain daily would push me to the point of risking surgery if there was a chance of improvement that way. I may reach that point, but can at least do alright on domperidone, buspar, and the occasional oxycodone when the pain gets too bad. But, the bland diet is something that may never change and that is hard to think of given I am only 56 years old.