Chronic small bowel obstruction from adhesions

Hello, I’ve written on here about some of the other problems... Gastroparesis, Crohn’s disease, EOE, slow moving colon, bloating, bruising on my stomach, im sure there is more. My bloating has not gone down in over 6 months. My GI doctor knows that I have a massive amount of scar tissue that could be causing my blockages or obstructions. But no one will do surgery due to the high risk. Basically my inside are cemented together by all the scar tissue. I’ve been going to PT, and acupuncture , to try and get relief. It’s been close to month and not really gotten that far. Does anyone know anything about scar tissue or if the Mayo Clinic has any doctors that deal with it or any studies going on a Mayo Clinic? The pain that comes with all my other issues and the pain and damage my scar tissue is causing along with this bloating is really frustrating. I’ve been looking everywhere to find something or someone and have come up with nothing. Any suggestions???? Thank you

Hello Bentley33, I too am suffering from multiple scarring from so many surgeries ( Gall bladder, appendix, Nissen fundoplication surgery, endometrial ablation, removal of one ovary at a time due to cysts, hysterectomy, bladder mesh implant due to hernia on the neck of bladder with prolapse, rectocele implanted, bladder mesh removal, Botox injections in the bladder for 6 months therapy ( bladder uncontrollable spasms/contractions) Interstitial cystitis with unexplained hematuria) finally bladder removal and with Ileal conduit urinary diversion surgery) CT Scans show thickening of parts of intestine and fluid filled sacks???
The pain every day from eating anything is unbearable...It's a every day decision/? to either sleep for couple days and not eat or eat and spend hours upon hours in the bathroom and Stomach awoken yo up so big looks like I'm 7-8 months pregnant??!!Have been to several diff GI's then referred to Vanderbilt Digestive Disease Center in Nashville TN... Test after test..medication changes..diet changes.. They finally told me " We can't help you,and surgery isn't a option here at Vanderbilt" BUT... we will gladly give you referral to Mayo Clinic. Went to PCP about the referral..I was denied!! Well with my PCP persistent as I am to get some kinda help/relief Mayo in MN taking 2nd look at my medical records and history
I just pray they don't turn me down again 🙏🙏

Hello Bentley33, I too am suffering from multiple scarring from so many surgeries ( Gall bladder, appendix, Nissen fundoplication surgery, endometrial ablation, removal of one ovary at a time due to cysts, hysterectomy, bladder mesh implant due to hernia on the neck of bladder with prolapse, rectocele implanted, bladder mesh removal, Botox injections in the bladder for 6 months therapy ( bladder uncontrollable spasms/contractions) Interstitial cystitis with unexplained hematuria) finally bladder removal and with Ileal conduit urinary diversion surgery) CT Scans show thickening of parts of intestine and fluid filled sacks???
The pain every day from eating anything is unbearable...It's a every day decision/? to either sleep for couple days and not eat or eat and spend hours upon hours in the bathroom and Stomach awoken yo up so big looks like I'm 7-8 months pregnant??!!Have been to several diff GI's then referred to Vanderbilt Digestive Disease Center in Nashville TN... Test after test..medication changes..diet changes.. They finally told me " We can't help you,and surgery isn't a option here at Vanderbilt" BUT... we will gladly give you referral to Mayo Clinic. Went to PCP about the referral..I was denied!! Well with my PCP persistent as I am to get some kinda help/relief Mayo in MN taking 2nd look at my medical records and history
I just pray they don't turn me down again 🙏🙏

Hello @amyp304 and welcome to Mayo Connect,

I certainly can sympathize with your problems. Multiple surgeries and scaring produce a lot of problems with digestion. I have had three surgeries for carcinoid cancer in the upper digestive tract and also have digestive problems. We do have some members who have had success in dealing with this. I'd like to invite @thull and @nancybev to post about their experiences as well.

@thull had surgery at Mayo within the past year that was quite helpful to her.

I am glad to hear that your doctor is pursuing a referral for you at Mayo. It sounds like a good plan.

In the meantime, could you share the type of dietary changes you have tried?

Hello @amyp304 and welcome to Mayo Connect,

I certainly can sympathize with your problems. Multiple surgeries and scaring produce a lot of problems with digestion. I have had three surgeries for carcinoid cancer in the upper digestive tract and also have digestive problems. We do have some members who have had success in dealing with this. I'd like to invite @thull and @nancybev to post about their experiences as well.

@thull had surgery at Mayo within the past year that was quite helpful to her.

I am glad to hear that your doctor is pursuing a referral for you at Mayo. It sounds like a good plan.

In the meantime, could you share the type of dietary changes you have tried?

Hello Amyp304, I have had 2 surgeries for perforated appendicitis and then small bowel obstruction, very painful experience, I know how you feel. You may try massage your abdomen and foot bottom (refer a foot reflexology chart), I do a few times every day, it does help me a lot. Hope you will get help from Mayo, good luck!

Well I have tried to comply with providing all the documentation requested to comply with the first denial
I contacted Vanderbilt to comply with the second denial that Mayo said I was currently being treated by local agency, Got letter Faxed from Vanderbilt stateing I ah no longer able to be treated at their facilities. Still no good enough for everyone at Mayo..
Now I'm going to try Cleveland Clinic. Having all my medical records sent tomorrow morning
Why? Why doesn't anyone listen to us? We know it bodies better than anyone. Have kept in nfo from my family about bleeding from rectum when I have bowel movement. I'm not going to ER cause so that want to do it stick ring into your house into your stomach.. Tearing ultra from my barrettes esophagus.
I'm drinking or of options folks. Idk what or where to go from here

I am wishing everyone luck and prayers 🙏 for ask your ailments. Mayo Clinic said they can't offer me appointment at this time. My PCP Dr has worked very diligently to help me get appt and for prior approval with insurance to travel out of state for treatment..
But I did get appt @ Cleveland Clinic for the 27th of this month.. I'm hoping and praying that I will finally get some results and maybe some relief to finally be able to have dinner at home with my family and not have to be in pain 10-15 mins after eating and taking up residency in the potty for hours.
I don't know if anyone else has had these kinds of issues and unbearable pain for years and no answers... Just 1 Dr. passing a patient to many other Dr's (9 Gastro Dr's in last 4 yrs) Very Disappointing and depressing, feeling hopeless..!!?!!
But I am not giving up... Hope there is a light at the end of this tunnel for me this time
Take care of yourselves and god Bless