Mayo Clinic Connect
Has anyone been diagnosed with this? If so, which treatments have worked for you? And do you know which medical centers
or doctors have expertise in this?
Hello @delicht and welcome to Mayo Connect,
This is a very interesting question. I did a little online research and found a NIH website article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5037075/. I was not able to find any other Members on Mayo Connect who were discussing this particular problem, though. Have you been diagnosed with this disorder? If so, please share with us, as you are comfortable doing so, some of the symptoms of this problem and the way the diagnosis was reached.
Here’s what I found online about Segmental colitis associated with diverticula:
“There is now thought to be an overlap between chronic diverticular inflammation and the inflammation of IBD. It is often diagnosed as ulcerative colitis or Crohn’s disease; however, there are no ulcers with SCAD.”
Hence, I’d encourage you to view this discussion on Connect, where members have shared their experiences with diverticulitis and colitis:
Recurring diverticulitis & colitis: https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/
Meanwhile, I’m tagging @suez @newenglandgal @lisabeans @kates56 @barens2 @secd @kkkk @lynnes @cdancer2 @christo56 @missie @dongee @sherw @miraklwkr @wesbig @user_cha5e73f6 @retrebotic @akogut @lynnkay1956, @allegro @michellr @bakb @lshell @gailfaith @dbwhitted @gailfaith @ann64 @mjgarr @sodonnell @kristimotch @shosh37 @aithnie @mpratto @ekoltun6 @mkzpony, to join this discussion and share some of their insights.
Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
With regard to treatment, according to this journal article, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5411375/ “First line treatment is usually medical and traditionally this has included the use of antibiotics, salicylates, or a combination of the two together with a high-fiber diet.
…suggested treating patients in whom SCAD is not severe enough to warrant surgery with a first line of high-fiber diet and/or antibiotics such as metronidazole 400 mg t.i.d with ciprofloxacin 500 mg b.i.d for a week.”
@delicht, as Teresa mentioned, we look forward to getting to know you; have you been recently diagnosed with SCAD?
Liked by Teresa, Volunteer Mentor
Many thanks for this, Teresa. What a wonderful service you have here!
I was diagnosed with this over a year ago, but have been sick on and off for 4 years. And as GI matters go, not everyone agrees on this diagnosis.
Thank you for your kind words. Mayo Connect is a very unique support system where we all learn from each other. As this is a rather rare diagnosis, could you share a little more information. For example, you say that “not everyone agrees on this diagnosis.” Was this diagnosis made by a GI specialist or another type of doctor?
Jump to this post
I have seen 3 GI specialists to get second (and third) opinions. Other diagnoses have been (1) symptomatic diverticular disease and (2) IBS. My current GI specialist arrived at the SCADD diagnosis after trying out a number of treatments in succession. He was using the treatments to alleviate my symptoms, of course, but also as a diagnostic tool. At that time about 2 1/2 years ago, I was having sudden attacks of severe abdominal pain. The medication that finally worked for me was mesalamine (delzicol), which I continue to take. I also have irregular motility. I take miralax and citrucel for constipation, and other medications for visceral hypersensitivity. I rarely have severe attacks of pain these days, but I do have mild pain – localized on the left – from time to time. And I continue to have irregular motility. I have not been able to figure out which foods – if any – aggravate my symptoms. This has been an ongoing difficulty.
(This probably gives you more information than you wanted or needed!)
Since you mentioned motility, I wonder if @decosmo @hew @upartist @clemlaa @kidbjp would have any insight? Here’s clinical update from Mayo Clinic, as well:
Hello All who are following this. Very interesting and quite relevant to me as well as you. The link Kaanaz posted was very informative. I have actually been through much of this unique testing at the Mayo clinic, and on to surgery. It was challenging and necessary. The testing provided an immense amount of information. Make sure your prior authorizations are in place prior to some of these unique tests. These tests clarified my pelvic floor issues, which required surgery. I have also received the very specialized pelvic floor rehab provided by the Mayo Clinic, and am scheduled to receive a refresher course. It does help. There is no way to explain it really. Biofeedback is used to counter the dyskinesia of the muscles of defecation. Unique! However, a person may have more than one issue occurring concurrently at a time. Diagnosing this is a great challenge for any one clinician. Therefore, a team approach would be recommended…. Urogynecolegy with gastroenterology? Motility can be interrupted by more than one cause at the same time. Possibly a pelvic floor dysfunction concurrent with a small bowel dis motility of various etiologies? I guess asking questions is the way to proceed. That is what I plan to do. Meanwhile, I am balancing the diet ( timing, liquids, hydration, levels of fiber, medication, and miralax). There seems to be no formula of course, but daily schedule and the relaxation response of our body are huge players in the success or failure of the day to day operation of the bowel. I hate NG tubes, as I am sure you do to. I want to avoid future surgeries and incapacitation secondary to pain and nausea. So I monitor the posts on this blog. I can learn and improve my outlook with information. So thank you for all the information you provide freely! It helps.
Liked by Kanaaz Pereira, Connect Moderator, Gail, Alumna Mentor
Today I received the same diagnosis of SCADD. My journey has been 30 years although fortunately about 15 years ago, an internist recognized I had some form of colitis and started me on Asacol. Fast-forward to 2010-2011 when I have two C.diff infections, Asacol was replaced with Delzicol and now my insurance won't cover it. My colonoscopies in 2015 and 2019 revealed polyps which were removed, diverticulosis, and little inflammation. What was initially thought to be mild IBD with occasional flares, is now diagnosed as SCADD. Some days my insides feel raw from diarrhea and urgency. I wake up at night to have a bm. I have been nauseated and run low-grade fevers. A flare for me feels like the flu. My immediate family history includes parents with diverticulosis, four siblings and myself with auto-immune diseases, a nephew with Crohns and a niece with celiac disease.
I had endometriosis and until I had a complete hysterectomy at 34, the physicians that treated me attributed my abdominal pain to "female" problems. I think everyone has to find their own path to managing their disease. For me, I know when to switch to low fiber or just liquids. I am very cautious with OTC medications and drinking coffee and alcohol. I need to get more exercise, reduce stress and lose some weight.
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