Newbie Nightmare

Linda in BC · Post by **Linda in BC** » Sun Oct 31, 2010 11:00 am

And many of us find we can tolerate bananas very well. For me, they were a mainstay in my diet at the beginning.

Linda

GRB · Post by **GRB** » Sun Oct 31, 2010 3:40 pm

Thanks guys. In the hospital they gave me potassium, salt, sodium bicarbonate and maybe other things, I was so dehydrated I needed everything.

I've begun drinking more. I find that if I make orange juice I drink more, which is not how I usually am. I usually drink just plain water...Banana's are a staple. My blood work showed my electrolyte levels were good when I left the hospital and I didn't have to take extra in pill form.

I have to go shopping again soon and remember to get something for replenishing electrolytes just so I can feel like I'm taking care of myself. Thanks for the reminder.

nancyl · Post by **nancyl** » Thu Dec 30, 2010 8:09 pm

Hi GRB,
I am new here and have been doing a lot of reading. I thought I would offer information on the following things that have helped me.

I like Diarrhea Stop (by Renew Life) better than immodium. It has Koalin Clay, apple pectin, and advanced charcoal. Also, my doctor recommended coconut water. It has lots of potassium, electrolytes, etc. without sugar or sorbital. When I have a flare I drink that and it helps with my energy levels and keeps me from getting dehydrated. Also, something called Replenish. All these I pick up at our local health food store.

I am still trying to figure out what is triggering my episodes. Hopefully, a nutritionist I am meeting next week will be able to help me. My doctor has not been much help. He diagnosed me with MC and told me to stop taking all vitamins and supplements and dairy and see him in a month. He has also spoken about pepto bismol and I take it occasionally. As much as I hate the big D, I do not want to suffer from constipation either and I'm a little nervous that the Pepto will do that.

I am glad that you are doing better. You certainly had a bad time there for a while.

tcorbett · Post by **tcorbett** » Thu Dec 30, 2010 9:36 pm

GRB,

Welcome! Sorry that you had to find this group, but so happy you did. This has been such a blessing to me - I was diagnosed almost 8yrs ago w/Celiac, wish I knew then what I know now - I would have pulled dairy out in the beginning to help with healing. This August I was diagnosed with MC - it appears I had been misdiagnosed for almost 40 yrs - it's the MC that was causing all the problems not Lupus! Anyhow, I would take dairy out for sure and like others, soy, eggs can be biggies too.

I am currently on the Specific Carbohydrate Diet - no grains, starches or sugars. Waiting for it to help, but with all the years of damage it will take time for healing. There is a good recipe for a mild homemade jello - 1/2 cup cold water, 1 pkg Knox gelatin - spread on the cold water to dissolve, add 3/4 cup boiling water, 1 cup White Grape Juice (I use Welchs in a bottle because there is no sugar added). It's not like regular jello, but it really soothes my stomach. Chicken soup, as plain as can be is very comforting too - I only use salt and pepper or seasoning - chicken, carrots, water - make sure carrots are like mush. Feel free to message me or email me.

I am glad you are feeling better after all you have been thru - that must have been really scarey. Can you tolerate Gatorade? I would keep some handy, and when you make soup, maybe freeze a few servings to have on hand.

I continue to learn more and more from this board - just the responses to you have been so informative to me. Like they say, we have to keep learning - boy, does this disease keep me learning. Patience is a virtue I need to learn!

Take care - keep us all posted. Theresa

here is a link to some recipes I use on the SC Diet - simple soup and the gelatin I explained above - plus some more - maybe helpful. http://www.pecanbread.com/new/recipes1.html

hoosier1 · Post by **hoosier1** » Fri Dec 31, 2010 2:26 pm

GRB

In response to your question regarding a "working medical kit for a bad flare which includes nausea", I can tell you what I carry (and I have evolved my kit as my symptoms have changed over time).

First, I get nausea relief from either pepto or valium/ativan. Usually I reach for a low dose of valium. I know it is in the same class of drug as ativan, and I recall my wife being successfully prescribed ativan for nausea at the Cleveland Clinic. They found it to be a helpful side effect. It helps me a lot.

I also carry imodium, lomotil, bentyl, tylenol (helps with pain at times), formerly entocort (now Asacol), and a pro-biotic.

Since Sep 1, I have evolved my diet to be 100% Gluten Free, mostly dairy free, and mostly soy free. I think this is helping. And it is sure a lot healthier than the way I formerly ate.

I travel a lot so I am sure I get glutened on occasion, but nearly as often as when I was finally diagnosed.

Hope this helps,

Rich

klhale · Post by **klhale** » Fri Dec 31, 2010 7:47 pm

I drink Gatorade. The hospital and docs said that is why I never got really dehydrated, it keeps your electrolytes up...I think it saved my life. I drink it daily and I love it! I think the Orange flavor is the best.

Also, as far as food goes, bananas work for me too!

GRB · Post by **GRB** » Sat Jan 01, 2011 3:59 am

Thank you all for your wonderful replies and suggestions. I just found a somewhat local market that carries gluten free products and I'm looking forward to checking it out. So far I've been able to add several things back into my diet without problem. I eat beef every now and then (maybe once a month) but mostly it's still chicken soup with carrot and onion, salt and pepper...sometimes with broccoli and sometimes with zucchini . I did enjoy chicken curry and rice for Thanksgiving and Christmas...surprise, it didn't bother me and I really enjoyed having something beside chicken soup I froze a good portion for another time.

I do enjoy Gatorade and need to replenish my supply...I've eaten so many banana's that I've lost my taste for them...I have to buy small ones or I waste too much. Avocado is good...gluten free brownies are wonderful but I don't think my stomach is ready for them as it caused upset.

My tests came back that I'm also casein sensitive but not soy sensitive. I don't eat much soy but I have some soy milk in the fridge that I'm trying...

My biggest problem is that my gastro doc is talking about putting me on another med...I can't remember which one. They want me off of entocort...and I'm worried because I was doing so well on 3 a day...normans once a day like clockwork...now I've reduced to 2 a day and I have a mix of normans and less than...several times a day. I also have other symptoms reappearing but so far no big D. I'm not sure how to approach this med change with my doctor without being labeled 'difficult'...but I've put them off but there is a showdown coming. If I could just get them to come to this forum and read....

Stress is a big trigger for me and right now I have an extremely sick horse...I've had him from a weanling and he's 20 this year (he and his sister)...he's my bud and I don't know if he's going to make it. Very, very sick. I'm trying to stay calm but I can tell it's effecting me. I'm just so grateful that I've recovered enough strength that I can care for him. We won't know if he's going to pull through until next week sometime...right now it's touch and go. (which is why I'm writing this in the wee hours as I go out to the barn every few hours to check on him and I can't sleep)

Anyway...I appreciate all the information and good wishes. Thanks again for taking the time to share what you've learned with me.

I was lucky to find this place and all of you two weeks after being diagnosed...I'm glad I did. You've all been an incredible help and inspiration.

Happy New Year....to us all!

Linda in BC · Post by **Linda in BC** » Sat Jan 01, 2011 10:35 am

Dear GRB

I hope your horse pulls through. That is a really hard thing to go through. My thoughts are with you.

Re: the med change... you could always do what some of us do, and that is buy your Entocort off the internet and keep taking it, if your doc won't continue to prescribe. Lots of good info on here about why this is not a risky thing to do, ie people having been on it a lot longer (months or even years), than the 3 months doctors are told we should be, with no side efffects and good results.

Linda

GRB · Post by **GRB** » Sat Jan 01, 2011 1:07 pm

Thank you Linda. I'm very worried about him and he's in a lot of pain, even with meds. I stay hopeful due to the fact that he's old style Morgan and very hardy...and my recent experience with my own health crisis taught me that there are no certainties when it comes to health outcomes. I recovered completely, he may as well. My vet and I are doing everything possible...he still greets me with a snicker and looks for his carrot treats and is eating and drinking, as you know these are all good signs. I knew because of your avvy you'd understand my distress. He and I have had many happy miles on the trail together.

I like the suggestion of buying the Entocort online...from what I've read here I won't need a script. I'm living on a very limited budget but this is number one on my list of priorities. I want to have a life again and so far this is my best chance.

Thanks again to you and everyone here..

hoosier1 · Post by **hoosier1** » Sat Jan 01, 2011 8:04 pm

GRB,

My guess is that your GI doc is wanting to put you on on a 5ASA type drug like Asacol. And to be frank, unless it is a placebo effect or my diet is starting to kick-in, I think I tolerate Asacol better.

BTW, I noticed that you take Bentyl. Bentyl dries me out immensely. I need to hydrate often when I take even one pill. But Bentyl does help with my lower cramping.

Good Luck,

Rich

GRB · Post by **GRB** » Wed May 18, 2011 12:41 am

Update...

I've been on 1/2 tablet of Imodium a day with Bentyl when I get cramps or my stomach starts to bloat, no Entocort for 4 days...I may try 1 entocort per day starting tomorrow and see how that goes.

Frisco is still alive! I found a wonderful group who helped me keep him alive and with luck and proper trimming he may have good quality of life. He's very thin and still sore but chirpy and able to walk on a lead without limping. It was a lot of work, cost and time not to mention the worry but I'm happy to say I think we're on the up side now. His illness so soon after my near death experience forced me to get strong again...and gave me something to focus on. He and I recovered together.

Gay

Zizzle · Post by **Zizzle** » Wed May 18, 2011 1:58 pm

That's great! Do you attribute your improvement to diet changes? Are you still tolerating the soymilk OK?

GRB · Post by **GRB** » Wed May 18, 2011 11:25 pm

Yes, I think diet changes were huge. I had a terrible time in the hospital trying to find things I could eat...the nurses thought I was over reacting but I was very careful about gluten and casein. I don't have a problem with soy, at least the test came back negative.

Between the diet and Entocort I've been doing very well.

Has diet helped you?

Zizzle · Post by **Zizzle** » Thu May 19, 2011 8:44 am

Oh, yes, I'm relying solely on diet, focusing primarily on gluten and casein and avoiding obvious sources of soy (except GF soy sauce). I have a hard time limiting the raw fruits and veggies, so the fiber I consume seems to prevent norman from visiting, not to mention the cross-contamination risks I take at restaurants. But I usually only go 1-2 day, and they are unformed but not terribly urgent or explosive, so it's good enough. Life is nuts with a job, 2 kids and a house renovation. Hopefully someday I'll have the time to really concentrate on the diet and experimentation in the kitchen.

GRB · Post by **GRB** » Tue May 24, 2011 7:14 am

Sounds as though you've got a good handle on things. I'm in awe of all the people here who are able to manage this and have busy lives with work and home. I probably cause some of my problems because I'm a bit lax on fibre in my diet...I too can't seem to cut out fruits and veggies completely...unless I'm having a flare.

I had to up the Entocort to two tablets again and stabilized again to a normal bowel routine without bloating or cramps and nausea. I call that good and my Doctor decided to not change my meds so that went well.

Have a great day!