📣 Discussion Topic: When you think about your current treatment, what would you say is missing or feels incomplete, if anything?

[Skye_MC]

Hi All 👋 I hope everyone is having a wonderful week!

You may have seen this on our socials, but a little while ago we began collecting surveys to see what treatments and outcomes are most important to patients. I hope some of you were able to be a part of that study. If not, I still wanted to give an opportunity to everyone to share their thoughts on this topic, which may help shape some of the webinars and toolkits we provide later on. So, let's discuss! When you think about your current treatment, what would you say is missing or feels incomplete, if anything?

[deniseinmilden]

Hello Skye!

I have very simple idiopathic CP which doesn't give me much trouble besides occasional mild AP flares and ongoing severe EPI, which makes me prone to various digestion/indigestion issues, malabsorption and SIBO.

The main consequence is always struggling with vitamin and mineral deficiencies, including pernicious anaemia, and causing iron anaemia and osteopenia as well. I have immune system problems too and guess that part of this is due to microbiome dysfunction/imbalance.

The EPI is treated with Creon 25,000, on prescription, which is good and essential, but not a panacea.

I have Acyclovir 800mg daily to try to keep recurring shingles at bay. I'm still waiting for help with other immune function problems as vaccination has proved only minimally effective and I am hoping for more investigation.

I can finally get rifaximin on prescription when I need it to treat the SIBO.

I have no support for my vitamin and mineral deficiencies and have to buy all my own supplies and work out what I need to balance my diet and output. Thankfully I'm a qualified animal nutritionist and can use the Internet: otherwise I'd be lost - or dead!

I think more information on nutrition and treatments for SIBO would help a lot of people from comments I've seen on the Facebook groups.

For some, help with Type 3C and managing sugar levels with diet would be good. I've completed an online Type 2 diabetes management course with someone I was caring for, and I found that very useful, despite my existing nutrition knowledge.

Must run now but will add more if I think of it!

Thank you and good luck.

[Jackie1947]

My current treatment is from my wonderful GP because I'm on a waiting list to see a Gastroenterologist. Might be July/August? I can't have treatment as recommended because the enzymes contain pork products 🤮 so it's prescribed vitamins and immoduim . So I have no treatment as such .

[nanagizer in reply to Jackie1947]

Hi Jackie. What is your current treatment plan? I am not on conventional CP treatments either as my gastro doc (pancreas specialist) won't commit to diagnosis. I am being treated with lyrica and amytriptaline for pain.

[Jackie1947 in reply to nanagizer]

Hi. My Dr requested an urgent appointment back in February to see a Gastroenterologist but so far I'm still waiting. I found out hopefully in July/ August. My Dr asked the hospital for treatment advice in the meantime but only enzyme's were recommended. Didn't know they contained pork and took some. Bang a reaction as I'm intolerant to pork. No other treatment per say. I hope when I see the consultant she has a plan B. I only take paracetamol and a daily antidepressant which works like Amitriptyline. I cannot take strong painkillers because it sends me off with the Fairies 😀 i do take the occasional codeine.Ive joined a mindful group and the relaxation helps . Happy days!!

[Jackie1947 in reply to nanagizer]

Only as set by my GP as still waiting for 1st consultant appointment . Which I mentioned. Pain relief is paracetamol with codeine when necessary. The codeine are separate. Try not to use unless absolutely necessary. I antidepressant helps with the pain. At least my Rhuemtoid arthritis is under control as I self inject weekly biological drugs . Leaves you open to infection though as it lowers the immune system. Can't have it all!