Exploring New Dietary Freedoms With My Stoma Nurse

Gothfairy

Nov 20, 2012 1:35 pm

Well, today I saw a new stoma nurse in a new part of the country - admittedly, it has taken me six months to arrange contact, but better late than never. My new nurse was amazing; she took me through all the different types of bags, as apparently the one I am using is not ideal, and there are now new ones to try.

The best news she could give me was about my diet. I had been told a huge list of things that I couldn't eat - fresh fruit, vegetables, salad, etc., and consequently, for the best part of three years, I have been eating a seriously restricted diet. I have now been told that this was the sort of diet I should have been eating only while I was recovering.

So, to cut my ramblings short - I can now eat whatever I want!!!!!

Past Member

Nov 20, 2012 3:43 pm

I'm pleased you have found a good stoma nurse. If you have any problems, Satls and most of the other home delivery companies have community stoma nurses that will visit you at home. It must have been driving you mad being on a restricted diet for 3 years. A lot of doctors and nurses scare the hell out of us at first, saying you will never eat this or that again, but most of us can eat anything without any problems.

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Posted by: ejbetty

Geekyjen,

Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.

I love this website because of wonderful people like you!

Betty

Bill

Nov 21, 2012 8:28 am

Hello Gothfairy.I managed to get a good stoma nurse from the outset and I can vouch for the fact that they are well worth a visit. Mine gives very practical advice on all sorts of things including what certain, specific doctors will and will not do. I don't visit her very often now but she she has been non-judgmental and very helpful with my various experiments and inventions - to the point where she has on occasions raided her stores to find materials to help me make prototypes. Consequently I cannot praise her enough. You are indeed fortunate to have found a good one. Best wishes Bill