I was diagnosed with LC today...

[Jumpindogs]

Joanne and the Recycled Aussies

I just have to ask Joanne, who or what are Recycled Aussies?

All three of our Australian Shepherds are rescues, thus recycled. :D

Karma dropped off at a shelter in Peoria by her family complaining that she was hyper. They did not give her name or age. Transferred to Aussie Rescue. Just a normal high energy Aussie, with some reactivity thrown in, based on her behavior. Skid rescued from a high kill shelter in the Quad Cities by Aussie Rescue. Prolly a stray based on his behavior. Tango confiscated from an animal hoarder in Indianapolis as a neglect/abuse case and transferred to Mini Aussie Rescue. Prolly abused based on his behavior.

I love doing therapy work with Tango. His niche is the elderly...slow and gentle just like he is. Our next dog will be an Icelandic Sheepdog from a breeder. I wanna do therapy with terminally ill kids at our local Children's Hospital and nearly all Icies are great with kids. Aussies not so much. :-)

[Adelaide]

Oh Wow Joanne that is wonderful. Well it is not so wonderful that your fur babies had hard lives but so great that they have found a good home now. And how fantastic that you are doing therapy work with kids and the elderly. I just had a look at pictures of Icelandic Sheepdog and they look lovely

[Gabes-Apg]

JOanne and Linda
have you seen the youtube clip of the dog dancing at Krufts 2016 - the dog that came third (should have won in my opinion)
they are dancing to the aussie band AC/DC - highway to hell..

https://www.youtube.com/watch?v=8J_yEuUQ8OI

[Jumpindogs]

JOanne and Linda
have you seen the youtube clip of the dog dancing at Krufts 2016 - the dog that came third (should have won in my opinion)
they are dancing to the aussie band AC/DC - highway to hell..

https://www.youtube.com/watch?v=8J_yEuUQ8OI

Hadn't seen that one...that was awesome! And, of course, a righteous tune. :D Really hard for a dog to run sideways. But then BCs can do anything. :-)

[Adelaide]

That was awesome Gabes. I agree Joanne, Border Collies are so smart

[Jumpindogs]

Good morning my dear MC friends :-)

I've been working hard on maintaining phase 1 of my elimination diet since my May 12 diagnosis...six weeks. I've been eating banana, potato chips (potato, olive oil, sea salt), plain chicken, peeled sweet potato, peeled red potato, peeled white potato, garlic salt, olive oil, water. Had to add natural applesauce (apples, water, ascorbic acid) and ground turkey (turkey, rosemary extract) because I was going nuts. And dried banana (banana) because I need a snack besides potato chips to carry with me. I'm taking the following daily supplements that are all gluten, dairy and soy free: Magnesium 650 mg (divided during the day), Calcium 500 mg per my Osteo doc, Vitamin C 500 mg, Krill Oil, Vitamin K2 45 mcg, Vitamin B-100 complex. I am also using Life-Flo Mag lotion twice daily...Mag mg per teaspoon unknown since the company has not answered my email...and periodic evening Epsom Salt foot baths. Oh yeah...I take Benadryl at night to sleep.

I was on Uceris 9 mg every other day for 24 days starting May 12th. Also loperamide every 12 hours to address the urgency. Once I stopped the Uceris I went to once daily lop for a week then to every other day lop for a week. The plan was to stop the lop this past Monday and see what happens.

My BMs had been 5s with a few 4s during this treatment plan and I was going every other day. No worries about where the nearest bathroom was! I was so looking forward to phase 2 of adding soy or dairy or eggs and the results.

On Saturday my symptoms returned. On Monday they returned with a bit of a vengeance. I guess I am a Uceris relapser.

My doctor now has me on two 3 mg/24 hour budesonide capsules (Entocort EC) each morning with refills to last a total of four months. And an appt. to see him in three weeks.

I am sad.

I am also so frustrated with my GI doc's PA that I am going to see a different GI doc. I get along with everyone yet she and I are butting heads...so weird. It seems as if she is against me instead of in my corner. I didn't even raise any of the subjects from this forum after her initial dismissal of food being a possible issue so it's not that. They submitted my FMLA form but allowed only two tardies for the entire year claiming that the Uceris would fix me. It didn't. Now they claim the Entocort will fix me. It might. I sure hope so. But I already used up one of those tardies cleaning up a blowout. And they won't write a letter allowing me to keep my current parking space (one minute 10 seconds from the nearest bathroom...yes, I timed it LOL!) which I asked for since a bunch of us were just moved to a different lot (three minutes 15 seconds to the nearest bathroom). They claim I won't need it as the Entocort will fix me. It might. But I now have one tardy left. We are a union shop with strict work rules and a time clock...no leeway even if my very kind and empathetic manager would love to grant me some leeway. It's not just the PA. She talks to my doc and relays his decisions to me. He is a good GI doc with lots of satisfied patients in my local area and he fixed my GI bleed a few years ago. But I feel as if he is fighting me instead of supporting me. I am not an abuser of privilege. I am a hard worker. My goal is to never have to use my FMLA. I've asked my FMLA insurance company what language to use for my situation...twice and got the same answer...and the PA said they don't like to enable patients the freedom for that many possible tardies since some may abuse it. The PA wants me to call them with every tardy...and I am fine with that...but my FMLA insurance company said they don't have such an option. It's actually insulting. My hubby put his foot down...which he rarely does...and said no more of that doc and his PA.

The possible good news is that I found a GI doc right at the hospital where I work who actually lists CC, LC and MC as diseases he treats. And he is "actively part of a research team involved in the study of ulcerative colitis, Crohn's Disease, and microscopic colitis." A friend of my hubby's with a challenging form of Crohn's sees another GI doc in the same practice. She really likes her doc and his PA...the same PA the GI doc I found uses. I am calling today for an appt.

So that's something to look forward to. But I am still very sad. And having a little trouble coping with the concept of continuing with phase 1 of my elimination diet. Not trouble complying. Trouble coping.

Thanks for reading. I can feel your love simply by writing this here and I am a little teary about that. :-)

[JFR]

Joanne,

I hope your new doctor works out for your. The PA in the practice you have been using is treating you like a child rather than a mature adult doing her best to cope with a difficult disease. You deserve better than that

Gabes frequently mentions and I agree 100% that working with your attitude is as important as figuring out your diet. I haven't had any grains, dairy, soy, eggs or chicken for over 4 years. I figure I have a the choice to see this as extreme deprivation or as a gift I give myself to regain and maintain my health. Certainly it involves a change of mindset but it has been so helpful to me to see it this way. If a food is making you sick then for your body it is not a food it is a poison and poisons are best avoided. You may very well be able to add soy or dairy or eggs back in but it is also very possible that you may not. What is absolutely true is that however you have to eat, if you regain your health you will be able to enjoy life again without the constant worry of needing a bathroom and all the other nasty things this disease entails.

Jean

[tex]

Joanne,

I agree with your husband. It's difficult to trust your doctor (or PA) when she or he doesn't trust you. They can claim that what they are doing is in your best interest until they are blue in the face, but it doesn't mean a thing if their actions and their attitudes say something else.

It's not surprising that you would suffer a relapse of symptoms after only a 24-day Uceris treatment. That would happen to virtually everyone who tried that treatment. It was waaaaaaaaaaaaaay too short. It takes much longer for the diet to accomplish some significant healing of the intestines and until that happens, the purpose of the budesonide is to mask the symptoms to make life easier while the gut heals. Obviously your previous doc doesn't understand that (let alone his unhelpful PA).

Best of luck with your new GI doc.



Tex

[Janie]

Can't add much to this except to say, switch Docs. ASAP You need someone who will work with you not against you.

I also didn't use meds but diet only. But I am retired. I would and still eat: turkey cooked veggies and sweet potatoes for the longest time since May 5th. Just these past few weeks have added greener bananas, applesauce, venison, Gluten free bread and nut butters. I have normal BM's except for the occasional fluke of not cooking cauliflower to mush. I drink coconut milk and almond milk. Trying rice protein to add to my drink but find it a bit gritty.
I hope you feel better soon.

[Gabes-Apg]

Sorry you had the relapse...

this may not be the news/feedback that you want today, but there are a few risky items in your eating plan that you may want to review

the turkey with rosemary extract, can have soy in it
the dried banana, can be high in histamine and sulphites
I have never been able to add garlic back into my eating plan - and some garlic salts can have yeast and other ingredients in them
some can not use olive oil (i am one of those)
some people do react to white potato so the combo of having the potato chips and having them at meals may be too much.

I also wondered if you are getting enough protein - protein is important for healing, and it is good to use protein as snacks (rather than fruit or carbs)
making home made bone broth, and then making meals like soups/stew from the bone broth with your safe proteins and veges, is a good way to have flavoursome meal, easy to digest, packed with gut healing goodness..
for protein snacks, boil your safe proteins in bone broth to cook them, and eat them cold (I do this with chicken)
I boil my safe veges in the bone broth, this gives them more flavour and increases my intake of bone broth goodness


for the coping side of things, in the guidelines for recovery area are some books, and other suggestions to help us accept life with MC
i like audio books and podcasts, i play them while i am doing my cook ups, chores, sitting by the fire, editing my photos, colouring in.
some of my Pema Chodron audio books i have played more than 50 times over the past 4-5 years. each time something different from the book will appeal or link to my current situations... you can rewind and play it again and process what it means for you..

MC in your life can be a tough gig, hang in there, it is early stages of this adventure, and remember you are not alone
once you know your safe 'staples' (the stage 1 eating plan) it is a good foundation for the rest of your life. you can revert back to this anytime you are unwell or under stress. the trial and error stage can be tiresome, but sooo worth it for the long term

[Erica P-G]

Hi Joanne,

I've been working hard on maintaining phase 1 of my elimination diet since my May 12 diagnosis...six weeks. I've been eating banana, potato chips (potato, olive oil, sea salt), plain chicken, peeled sweet potato, peeled red potato, peeled white potato, garlic salt, olive oil, water. Had to add natural applesauce (apples, water, ascorbic acid) and ground turkey (turkey, rosemary extract) because I was going nuts. And dried banana (banana) because I need a snack besides potato chips to carry with me. I'm taking the following daily supplements that are all gluten, dairy and soy free: Magnesium 650 mg (divided during the day), Calcium 500 mg per my Osteo doc, Vitamin C 500 mg, Krill Oil, Vitamin K2 45 mcg, Vitamin B-100 complex. I am also using Life-Flo Mag lotion twice daily...Mag mg per teaspoon unknown since the company has not answered my email...and periodic evening Epsom Salt foot baths. Oh yeah...I take Benadryl at night to sleep.

You've done an outstanding job in 6 weeks! I'm afraid though that you may need to keep it up for a while longer. From what I see here I would suggest Lara Bars with only 2-4 ingredients as a snack - pick your safe ingredient mix from their assortment of bars, add in Sea salt and coconut oil and let the potato chips, garlic salt and olive oil rest for now. Switch things around until something clicks.

I am only eating Turkey, Ham, Pork chops and Cornish Hen bone broth with carrots, celery and gluten free noodles - an sea salt as my flavoring (I freeze this in portions and take it to work daily). I eat red and yellow steamed peeled potatoes mostly and am able to use some coconut aminos as a bit more flavoring. For a snack I will pull out a Lara Bar, or eat a small serve of Rice Dream Vanilla ice cream.

Best guess on the Mag flo lotion is going to be that it carries the same potential as the oil because you may let it stay on without wiping anything off due to the salt residue and therefore it will soak in completely given a longer period of time left on the skin. Assuming you are applying a dollop on legs and arms it could be roughly 200mg.

A side note on the Benedryl, test yourself every so often to see if you need benedryl every night. Just recently I plateaued with my healing and kinda started fresh with my approach and that meant looking at everything I had been doing and re-evaluating if it was still helping or not, no sense in continuing something if it really isn't contributing to the goal of finding the right connection of safe healing items. I'm not saying don't take it, but I understand if taken for long periods of time it has the potential to alter our cells and maybe in not such a good way.

I hope you find a Dr. that will listen and understand your path, even if they can't help 100% it helps our sanity when they at least offer some empathy to our situation.
Cheers
Erica

[Jumpindogs]

Joanne,

I hope your new doctor works out for your. The PA in the practice you have been using is treating you like a child rather than a mature adult doing her best to cope with a difficult disease. You deserve better than that

Gabes frequently mentions and I agree 100% that working with your attitude is as important as figuring out your diet. I haven't had any grains, dairy, soy, eggs or chicken for over 4 years. I figure I have a the choice to see this as extreme deprivation or as a gift I give myself to regain and maintain my health. Certainly it involves a change of mindset but it has been so helpful to me to see it this way. If a food is making you sick then for your body it is not a food it is a poison and poisons are best avoided. You may very well be able to add soy or dairy or eggs back in but it is also very possible that you may not. What is absolutely true is that however you have to eat, if you regain your health you will be able to enjoy life again without the constant worry of needing a bathroom and all the other nasty things this disease entails.

Jean

Yeah, she apparently has issues. Not good when she is the conduit between patient and doctor.

Thanks for sharing your great outlook, Jean. :-)

I am OK with even what most would consider serious deprivation. But this chicken, turkey, potato, banana, water is hard. I developed a dislike for potatoes and bananas ever since I went South Beach...too much carb. I crave fish and nut butter and even those Lara bars I haven't tried yet. I am craving protein. But I cannot stomach chicken for breakfast.

[Jumpindogs]

Joanne,

I agree with your husband. It's difficult to trust your doctor (or PA) when she or he doesn't trust you. They can claim that what they are doing is in your best interest until they are blue in the face, but it doesn't mean a thing if their actions and their attitudes say something else.

It's not surprising that you would suffer a relapse of symptoms after only a 24-day Uceris treatment. That would happen to virtually everyone who tried that treatment. It was waaaaaaaaaaaaaay too short. It takes much longer for the diet to accomplish some significant healing of the intestines and until that happens, the purpose of the budesonide is to mask the symptoms to make life easier while the gut heals. Obviously your previous doc doesn't understand that (let alone his unhelpful PA).

Best of luck with your new GI doc.



Tex

Thanks for the hug, Tex. :-)

I was concerned about that short course of Uceris, and the every other day dosing, based on what I've read here but wanted to give my doc a chance and maintain an optimistic outlook. I've been on Entocort for three days with no change in symptoms...ugh. Uceris helped nearly immediately except I did need to take Loperamide to help with the urgency. I am not taking the Loperamide because the PA did not advise starting that up again so I guess I have to call her tomorrow. Not looking forward to that. Guess it will be an opportunity for me to work on patience and tolerance. :-)

[Jumpindogs]

Can't add much to this except to say, switch Docs. ASAP You need someone who will work with you not against you.

I also didn't use meds but diet only. But I am retired. I would and still eat: turkey cooked veggies and sweet potatoes for the longest time since May 5th. Just these past few weeks have added greener bananas, applesauce, venison, Gluten free bread and nut butters. I have normal BM's except for the occasional fluke of not cooking cauliflower to mush. I drink coconut milk and almond milk. Trying rice protein to add to my drink but find it a bit gritty.
I hope you feel better soon.

Thanks, Janie. :-)

[Jumpindogs]

Sorry you had the relapse...

this may not be the news/feedback that you want today, but there are a few risky items in your eating plan that you may want to review

the turkey with rosemary extract, can have soy in it
the dried banana, can be high in histamine and sulphites
I have never been able to add garlic back into my eating plan - and some garlic salts can have yeast and other ingredients in them
some can not use olive oil (i am one of those)
some people do react to white potato so the combo of having the potato chips and having them at meals may be too much.

I also wondered if you are getting enough protein - protein is important for healing, and it is good to use protein as snacks (rather than fruit or carbs)
making home made bone broth, and then making meals like soups/stew from the bone broth with your safe proteins and veges, is a good way to have flavoursome meal, easy to digest, packed with gut healing goodness..
for protein snacks, boil your safe proteins in bone broth to cook them, and eat them cold (I do this with chicken)
I boil my safe veges in the bone broth, this gives them more flavour and increases my intake of bone broth goodness


for the coping side of things, in the guidelines for recovery area are some books, and other suggestions to help us accept life with MC
i like audio books and podcasts, i play them while i am doing my cook ups, chores, sitting by the fire, editing my photos, colouring in.
some of my Pema Chodron audio books i have played more than 50 times over the past 4-5 years. each time something different from the book will appeal or link to my current situations... you can rewind and play it again and process what it means for you..

MC in your life can be a tough gig, hang in there, it is early stages of this adventure, and remember you are not alone
once you know your safe 'staples' (the stage 1 eating plan) it is a good foundation for the rest of your life. you can revert back to this anytime you are unwell or under stress. the trial and error stage can be tiresome, but sooo worth it for the long term

Thanks for digging in, Gabes. :-) More questions...

Where does the soy enter into the rosemary extract picture? I researched as much as I could online and it seems to be derived from rosemary alone.

The dried banana is only that...no other ingredients. Had to get those online to avoid the added sugar and other stuff. Is the drying process what changes the same fresh banana into a bad banana? I'd rather not eat them but I need a non-refrigerated snack.

Got my garlic salt from the health food store specifically to avoid all the other ingredients. It's just sea salt and organic garlic. But I can easily nix that.

What oil should I use instead of olive oil?

I dislike potato chips. But I need something that does not require refrigeration to take to work and other places that I can snack on. I am eating chicken at every turn. Except breakfast cause I cannot stomach chicken in the early morning.

Yes! I am crying out for protein! I am used to a huge protein breakfast (eggs, bacon, cheese) and not getting that is hard on me.

I have no clue what my safe proteins and veggies are...I am still trying to heal my colon so all I am eating is chicken, turkey, potatoes, olive oil, garlic salt, banana, applesauce, water. But after six weeks that is getting really old. I have trouble enduring my potato chip/sliced banana breakfast...complete yuk and no protein. I just cannot stomach chicken in the early morning.

Thanks for steering me to the guidelines for those coping references. You're an angel. :-)