Chronic small bowel obstruction from adhesions

Went to Cleveland Clinic Jan 27th. ( rental car for week, thinking I would be there few days for testing. Hotels @ $130 per night with valet parking package (3 days))

Gastro Dr did initial consult, spent about 45 mins going over all medical records that were sent week before appt and discussed my health issues and concerns..yadda yadda..
Dr ordered MRE and was scheduled for the next morning, which I was really impressed with the Dr and how quickly they got MRE appt scheduled. Was feeling like finally!! I might get some answers to what is going on inside my body every day pain. After MRE was completed they told me the Dr would/should have results by the end of the day. So back to hotel to rest again.
No return phone call from Dr’s office 😞. I cashed Dr’s office next morning around 10:30ish. I was then informed me my prescription for that my test results were being MAILED by postal mail to my Primary Physician!!?!! I was.. to be honest.. very upset!! Explained to the lady on the phone.. Really!? I just drove over 800 miles one way.. and they weren’t going to have me come back too the office for a follow-up appt for the Dr to know ANYTHING of the results? 😤😡. Filters came off and told her how what I thought about how they just leave a patient just hanging!!?!! Very unprofessional in my opinion. (Then told her “ well.. that’s nice to know just another Dr pushing me away with no help or answers) 😪
According to “MYCHART online. Dr recommend for me to schedule appt with my Urologist due to having Urologist evaluate renal cysts on right kidney (which has been there for years). So now awaiting to see my Urologist, March 10th. Just another hoop to jump thru.. costing me about $2K round trip and watched that little possible light at the end of my 11yr fight with this pain progressing over time.
It is what it is.. but I’m not giving up without a fight.. one day I will bug the crap out enough medical professionals they ONE... just ONE will tell me they can help ease some of this daily pain and server swelling every time I choose to eat
I will update post when I hear anything.. maybe someone else may be going thru same health issues I am and maybe it will help them too.

I totally understand what you went through.
That was exactly how my appointment went with a new gastroenterologist at Mayo.
Good luck with your continued journey to find the answers your seeking.

Anyone been diagnosed with Intestinal dysmotility, intestinal pseudo-obstruction?

https://www.iffgd.org/motility-disorders.html#dysmotility

Hello @amyp304

As I looked at the above website that you posted, it appears that you are dealing with small intestinal bacterial overgrowth. Is this correct?

If so, we do have a discussion group regarding this. Here is the link, https://connect.mayoclinic.org/discussion/sibo-diet/?

If you would like to share more, please let us know a little bit about your history with this problem. For example, what are your symptoms, how long ago were you diagnosed, etc.?

I look forward to hearing from you again.

Honestly I don’t know 😩. Idk if any of the 9 diff Dr’s I have seen really know either. I’m really just doing internet research trying to find answers that I can ask them at my next appt. This daily pain and swelling every time I eat or drink is really depressing

Please update after your appointment
I totally understand your frustration with doctors and not getting answers.
I am meeting with a new gastroenterologist on Thursday and praying that he can help me with my stomach pain. I do have gastroparesis and The stomach pain everyday wears you down so bad.
Some days I feel like what’s the point in trying to eat because I’m just going to hurt after.
Oh well we have to keep on keeping on to get one doctor to understand what it’s like and figure out some kind of treatment plan.

My Mayo GI doctor prescribed a mild antidepressant, "Mirtazapine" for that... I take 1 just before bed.. It seems to level things.. as no one who does not have a GI problem really does not understand what goes on with us all day long.... You get along better.. I live alone but eat out 1 time most days...to have some social life.. I order appetizers and sandwiches without the bread... I really don't think there is a treatment plan... just a coping methodology...

I am waiting on avasive surgery date for removal of parastomal hernia (knuckle hernia) And have meal out in to strengthen my stomach walls so the intestine doesn’t keep trying to push thru. I am also going to wear hernia support belt ( which wasn't advised of doing after bladder removal) and surgeon is going to also do lysis scar tissue removal
The Parastomal hernia is pressing on uorostomy stoma and sometimes slows or blocks uterine output, within 24 hrs urine starts to crystallize and whala... UTI?!
I hope this helps and gives me some kinda relief
I will post again as I have know when surgery is scheduled
Thank all is you for all you’re support and kind words

Hello @amyp304,

It is so good to hear from you again. I hope that the procedures that you are planning will give you some relief from the discomfort you are experiencing.

I'm looking forward to hearing from you again. Will you post when you have a surgery date?