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Post by gutsybynature on Jul 14, 2014 20:41:29 GMT -5
Welcome rottielovie. Prednisone is tough... how long have you been on it? In my experience, if it doesn't work right away it probably isn't the right dose. Can you talk to your doctor?
Glad to hear you have a supportive husband! Makes a big difference!
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Post by rottielovie on Jul 15, 2014 16:33:13 GMT -5
I started the prednisone on May 23rd. I was started at 80mg, cut to 40 after 1 week, down to 20 the week after. At 80mg it seemed to work well, and I felt almost normal. By 20 it wasn't working at all. My GI told me to go back up to 40mg, but it doesn't seem to have worked since. I think the Humira may already be starting to work. I had my second set of shots last Thursday, and in the last couple days I have seen almost no blood at all, and my stomach seems to be tolerating food better. I only have the bad frequent trip to the bathroom in the middle of the night. During the day, it's manageable. I am so looking forward to changing my diet to the things I have always known were good for me. I might have had my hand forced, but I feel like it will heal me in multiple ways.  |
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Post by gutsybynature on Jul 16, 2014 11:52:22 GMT -5
Glad to hear things seem to be getting better!
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feebee
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Post by feebee on Jan 7, 2015 18:07:39 GMT -5
Hi, this seemed the best place to introduce myself. Hope that is ok, I am just aware there hasn't been a post since July. I have learnt about Paleo following my 5 (now 6 and 3 week old now) year old being diagnosed with UC. It was very out of the blue with no known family history. I am in the UK and diet seems to be a complete no-no with the Dr's. One said - so you want to ban her from sweets and so she won't be able to go to a party with her friends! At that point I had just been asking about probiotics and all the stuff I had been reading on sugar.
So I took us to a nutritional therapist who has training with in the institute of functional medicine. Her dad and I are seperate and he is not on board (although is beginning to try a bit). He is happy to just take medications and hope for the best.
She went quickly into remission on IV pred, then meds for 8 weeks, and is now just on mezalazine. She has always swollen with wheat/gluten but I naively thought it was just "mild" intolerance and would cut it out for 1/2 the week and that would keep ontop of it which has always worked for my eczema. Little did I know/understand at that point.
We are not fully paleo yet but are getting there gradually. Overall her fruit/veg intake has rocketed (which shocked me given the diagnosis), I am no longer a vegetarian. We are having stock in most meals in some form. E is loving morning juices which seems the best place to put something green(a bit worried about what I read about oxylcylate but assuming that as she is tolerating them then I don't need to worry), she is on probiotics and as she is a dairy fan I looking at how we ate before and patterns of stomach swelling getting rid of sugar, processed foods and gluten seemed the biggest priority. I am using keffir, unsalted organic butter, and homemade yoghurt using SCD recipe. When having cheese it is goat or sheep and there is hardly any compared to the past. I have just started making fermented vegetables too, although E is not keen/won't eat! There are also some supplements recommended.
I would love to put on her AIP but I think changes need to be gradual for her as she is so young and was quite fussy! At present she is in remission. Hopefully she will stay there and then if she flares when older then at least I can talk to her and make some choices together.
Having been a vege for 22 years it has been a steep learning curve since the end of July 2014 (time of hospitalisation, only 3 1/2 weeks after first symptom, it was quick and severe). Dr seems surprised by how well E is. Personally despite being an ok weight (though more than I would like) I have lost weight and despite the stress of worrying over E (they are also questionning PSC) in many ways I feel quite good. It has made me realise what a sugar addict I was and while I have no severe health issues some minor things are improving for me too so even if a cure appeared overnight then I would never go back to the way we ate before.
I am on a huge learning curve and so hard as it is not me and E is only just 6 so it can be difficult to monitor things. She is still at an age where tummy pain is used to describe everything including emotional upset. While she has no UC symptoms she has also learned to be manipulative with tummy pain already so there are times when perhaps a meal has made her uncomfortable but perhaps she just doesn't like it! I am quite good at reading her however I don't always trust my judgement any more as her symptoms came out of nowhere so of course I keep looking back and thinking I missed something.
Gosh sorry that was longer than I planned. Basically if any of you have tips/advice please give me feedback.
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kaybee
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Post by kaybee on Aug 23, 2015 0:52:46 GMT -5
Hi, I'm Katherine. I'm from Sydney, Australia. Last month I was diagnosed with mild Ulcerative Colitis. My GI has prescribed Salazopyrin and I've been taking this for the past 5 weeks. I'm not comfortable taking the medication as I think it's messing with my liver function, and I am really keen to find a natural way to manage my symptoms/recovery. I have started to see a Traditional Chinese Medicine practitioner and so far have had one session of acupuncture and am taking some herbs to help my body to function more normally. I have been following a combination of the paleo diet and FODMAP diet for the past 2-3 years (completely no gluten, very little sugar and more recently no dairy) and didn't think that any of the other foods I ate (including nightshades, seeds, grains like rice) were giving me any problems. While searching for a diet to follow to help heal my gut and inflammation, I see that it's possible these foods have been hurting me. I am not sure whether to follow the SCD, GAPS, autoimmune paleo, or some other diet. I'm wondering what other people with UC have found to be helpful for them.
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farmfresh
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Post by farmfresh on Sept 15, 2015 9:02:50 GMT -5
Hi, I'm Katherine. I'm from Sydney, Australia. Last month I was diagnosed with mild Ulcerative Colitis. My GI has prescribed Salazopyrin and I've been taking this for the past 5 weeks. I'm not comfortable taking the medication as I think it's messing with my liver function, and I am really keen to find a natural way to manage my symptoms/recovery. I have started to see a Traditional Chinese Medicine practitioner and so far have had one session of acupuncture and am taking some herbs to help my body to function more normally. I have been following a combination of the paleo diet and FODMAP diet for the past 2-3 years (completely no gluten, very little sugar and more recently no dairy) and didn't think that any of the other foods I ate (including nightshades, seeds, grains like rice) were giving me any problems. While searching for a diet to follow to help heal my gut and inflammation, I see that it's possible these foods have been hurting me. I am not sure whether to follow the SCD, GAPS, autoimmune paleo, or some other diet. I'm wondering what other people with UC have found to be helpful for them. I have Crohn's not UC but thought I'd chime in that I've found the AIP to be the most helpful. I did the SCD for 6 months first and while I did have a lot of improvement I never felt as well as I thought I should/worth staying SCD then I got pregnant again and couldn't handle the 1st trimester plus SCD so I stopped - but kept the majority of the progress I made on the SCD. Fast-forward 3 kids later and still dealing with flares I've gone AIP and FINALLY I'm feeling the progress I always thought I should. I think dairy proteins and nightshades (both allowed on the SCD) are triggers for me and I was eating too many nuts and eggs (I've since been able to reintroduce them on the AIP). If you have underlying food intolerances you likely won't find them useless you eliminate them like on the AIP and you gut will still benefit like on the SCD. GAPS is very similar to SCD with a slight difference in intro diet and emphasizes fermented foods. |
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farmfresh
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Post by farmfresh on Sept 15, 2015 9:31:37 GMT -5
Also welcome Feebee! So sorry your daughter is struggling with UC. How hard for both of you. Getting rid of sugar, processed foods and gluten is a great place to start. Good for you for looking into alternative treatment too. when I was diagnosed with Crohn's I didn't even realize there was any alternatives for years. Wish I knew then what I know now! I would recommend continuing towards a full paleo diet and once you feel comfortable eating paleo then consider going AIP. Also while dairy might be ok for her (i thought it was for me, in fact dairy products were my FAVORITE foods (besides breads) it's actually a huge no for me) often foods that you crave/are the one thing you'd live off of on a deserted island are actually something you are reacting to. so I guess I'm saying just be aware.
If you're not already a food journal where you also note any symptoms through out the day is super handy for connecting the dots. it might be even handier cause you're trying to treat a young child.
Finally, perhaps you use heat pad/ hot water bottle already when your daughter complains of tummy pain but if not try it! it's my #1 way to deal with tummy pain!
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