How to get help to manage ulcerative colitis along with Parkinson’s

Posted by kaf80 @kaf80, Apr 29, 2022

I am curious what reasons may lead to a decline in an appointment for a Parkinson’s Patient with Ulcerative Colitis with multiple recent hospitalizations and no obvious improvement in symptoms?

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Hi @kaf80, how disappointing. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Unfortunately Mayo Clinic has more requests for appointments than available openings, especially in the Division of Gastroenterology at the moment. Are you already a patient at Mayo Clinic for Parkinson's?

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@colleenyoung

Hi @kaf80, how disappointing. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Unfortunately Mayo Clinic has more requests for appointments than available openings, especially in the Division of Gastroenterology at the moment. Are you already a patient at Mayo Clinic for Parkinson's?

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No, he’s not. We were hoping for a Parkinson’s specialist who can help manage him concurrently as the conditions and their treatments pretty much oppose one another 🥲

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@kaf80

No, he’s not. We were hoping for a Parkinson’s specialist who can help manage him concurrently as the conditions and their treatments pretty much oppose one another 🥲

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Kaf, I can understand why you wish to go to a multidisciplinary institute like Mayo Clinic where doctors from different specialties work together to serve the unique and multiple chronic conditions and needs of a patient. If you submitted the referral to the GI department, you might consider resubmitting with a physician referral to neurology.

I updated the title of this discussion to encourage others who are managing both conditions to chime in. While not necessarily ulcerative colitis, @hopeful33250 also deals with serious GI issus along with Parkinson’s and she may have additional thoughts. It is challenging to manage conditions where treatments may be contraindicated.

What treatments for UC are having ill effects for Parkinson’s or vice versa for your husband?

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Hi, it's my dad 🙂 Thanks for that advice! We actually went through Internal Med; would it be best to have his physician resubmit his request through Neuro instead and then perhaps pull in other specialists that they deem necessary?

It's basically a viscious cycle of constipation on top of diarrhea and loss of continence of bowel, plus new onset of urinary incontinence which makes him hesitant to be up and moving around, so he's not getting the exercise he needs….add in that he's stubborn and finally willing to make some major changes to have his life back, I feel we are on borrowed time. He just spent three weeks admitted out of state due to muscle spasm that may or may not be related to either of these conditions and also was found to have vascular insufficiency. We are just desperate for a total system evaluation to get him on the right path.

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Hello @kaf80

I'm glad that @colleenyoung, invited me to this discussion. I certainly understand how difficult it is to treat neurological problems and GI issues. I have PD as well and as you are probably aware, constipation is a common issue for PD patients. Was your dad given any guidance regarding a high fiber diet, and the use of Metamucil and MiraLax? Has there been any improvement?

As Colleen mentioned, in addition to the PD, I've also had three surgeries on the upper digestive tract for carcinoid cancer and that has affected my digestive tract issues as well.

I'm sorry to hear of his recent hospitalizations for muscle spasms. Were the spasms in his limbs? I'm wondering, also, if your dad was in the military and if he had exposure to Agent Orange?

This sounds like two very difficult health issues. If your dad is not able to be seen at Mayo, is there a university medical center in your area? University medical centers are also multi-disciplinary centers and they can provide care for difficult to treat problems better than local community hospitals.

I look forward to hearing from you again. Will you continue to ask questions and post updates?

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He actually lives in Madison, WI and I would think UW-Madison might be an option.

He’s not a veteran and has been managing his colitis with all the above successfully for many years, plus azathioprine.

Do you think requesting through Neuro would be a better option than Internal Med?

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@kaf80

He actually lives in Madison, WI and I would think UW-Madison might be an option.

He’s not a veteran and has been managing his colitis with all the above successfully for many years, plus azathioprine.

Do you think requesting through Neuro would be a better option than Internal Med?

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I don't want to get your hopes up, @kaf80, but it can't hurt to try for an appointment with Neurology first.

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Ok. Since his PCP is requesting a second triage, perhaps we can ask for a neurology review?

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