Newbie Nightmare

[GRB]

Hi everyone. I was released from the hospital last friday and I'm still a bit weak but recovering. I haven't been diagnosed for very long (this spring) and I went on Entocort EC and Bentyl and was having a few Normans when I had a bad flare.

Before I knew it I was badly dehydrated (I hadn't read enough here and didn't have a clear understanding of how this works)...then I contracted a very bad pneumonia and by the time my son found me my kidneys were shutting down.

It was like a cascade and I feel like an idiot. The good news is that I am making a full recovery...even my kidneys.

I have to get a grip on how to deal with this disease. What would you all consider the working medical kit for a bad flare which includes nausea? What do you keep on hand and what do you do to keep yourselves safe? I realize my situation was unusual, I've never been so sick so fast in my life...

You all have the experience and I hope you'll share what you do and why.

Thanks for being here, I'm learning so much and feel I have the support of people who know what this disease is like to live with.

I have been on GF diet for a month...my bowels are still messed up and everyday is different.

[Joefnh]

Hi GRB, first welcome to the group

It sounds like you have been through the ringer... I am glad that you have been GF for a while now, but you also need to determine if you are reacting to soy and or dairy. It seems for most of us that its not just gluten. Once you have figured out the food sensitivities the normans will visit more often.

As far as an emergency kit, certainly staying hydrated when your are having D is imperative and probably your first priority

Tex just posted a pointer about this subject to this link

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992

Along with that having your meds readily available including the Entocort, and I am not sure if you have tried it Imodium and pepto bismol can also help with the D.

Avoid all raw vegetables and fruits except possibly bananas. For most of us these can really irritate the GI tract.

I know that when I am in a flare having very simple foods can be quite a help. For me it includes bananas steamed well cooked carrots and chicken with very spices, usually just a bit of salt. I usually also overcook some white rice with extra water making it sticky or gooey, that really feels good on the gut.

For the nausea I find that some shaved ginger root or ginger tea works quite well, but I have heard from another member on this board about a peppermint (I think) rub or oil that also works, hopefully Gabes can clarify this.


Thanks for the great question GRB and I hope you continue to feel better.

--Joe

[GRB]

Thanks for the reply Joe. Even with all my reading here I didn't get that I have to avoid all raw vegetables or fruits. Okay...well cooked only.

I have benefited from Imodium but prefer the Bentyl as it doesn't bind me up and I don't have the gas. I do keep it on hand. Pepto will empty my stomach in a heart beat...it's been that way from childhood. Ginger tea sounds like something that might work for me, Thanks. I'll try the gooey rice too.

I will look at what Tex posted...I need to figure out what would be best to keep on hand to rehydrate when needed. On edit..The link you posted is perfect ...I will print it out for myself.

I'm making gooey rice as we speak.

Thanks again.

[Celie]

Welcome GRB.
I am new, too. I am still learning my way around. This members of this group are wonderful. They are very knowledgeable and willing to help. You came to the right place. I hope you get better soon!

Celie

[tex]

GRB,

Welcome back. The reason why we are at such a big risk of becoming dehydrated, is because when MC is active, the type of diarrhea that goes with it is called secretory diarrhea. With secretory diarrhea, instead of the colon removing water from the fecal stream, as it is designed to do, it adds water, instead. In addition, part of the colon's normal job is to recover electrolytes, by absorbing them, but with secretory D, it secretes electrolytes, instead, so they are flushed away, and lost. Obviously, this can cause us to become dehydrated very quickly, and just drinking water, may not be enough, if the D is severe.

Also, when the gut is hypersensitive, due to a flare, fiber tends to irritate it, and fiber can cause the reaction to be worse, or last much longer than it would, otherwise. Most fruits and vegetables are relatively high in fiber content, so you may have to limit the amount of them that you eat. As Joe mentioned, cooking them, (overcooking them), makes them easier to digest. Also, always peel all fruits and vegetables, because most of the fiber is in the peel. Avoid raw lettuce - it's extremely irritating for most of us, until our gut heals.

It takes a while for the gut to heal, so it usually takes a while for the diet to begin showing benefits, but in the long run it is very effective, provided that you can pinpoint and eliminate all the foods to which you are sensitive, from your diet. As Joe mentioned, most of us are sensitive to both gluten and dairy products, and about half of us are also sensitive to soy. Some of us are also sensitive to other things, such as eggs, or yeast, for example, but hopefully, those won't turn out to be a problem for you.

Good luck with your recovery,
Tex

[GRB]

Joe, I was lucky enough to have fresh ginger in the fridge...it does the trick. Thanks for the reminder. I have been overwhelmed by this illness. It came on so suddenly and I have had little to no experience with the big D.

I intended to add that when I went GF I also gave up dairy. It's hard to accept these changes, I love fresh food and wonder how you have all managed to have lives and not starve.

Tex your explanations are wonderful, Thanks. Now I understand. I hope to be able to get the recommended tests for my sensitivities soon.

Thank you all for the welcome and needed information, it helps.

[mbeezie]

GRB,

Sorry to hear you had such a rough time. It is important to understand the disease so I encourage you to surf through this forum for lots of helpful information.

It's hard to accept these changes, I love fresh food and wonder how you have all managed to have lives and not starve.

I can certainly relate to this sentiment - felt the exact same way when I first started my diet 20 months ago. It felt like all I was doing was restricting more and more. But the restrictions paid off and I started to get better. I had to really change my idea of "healthy", which previously meant lots of dairy, grains and legumes. I now eat much lower in fat and far more fruits and vegetables. As I got better I was able to tolerate fiber, so I am hopeful the same will be true for you since you love fresh food. Once you get a handle on the D you may be able to tolerate more than now, so hang in there. The bonus of the diet is that I have reduced inflammation all over my body, not just my gut, and that's a great feeling. It takes a while to wrap your mind around the restrictions and I think we go through a grief process saying goodbye to crusty French bread and the like, but feeling better trumps bread any day. My son, who was 9 when he had to change his diet, said it best; "It helps to focus on what I can have have rather than what I can't have".

Hang in there - it gets better in time and you will figure out what you can eat.

Hugs,

Mary Beth

[MaggieRedwings]

Morning GRB,

Mary Beth's son may have said it best: - "It helps to focus on what I can have have rather than what I can't have".

Boy is that ever true. After 10+ years on this diet I don't even think about breads, etc. much anymore. Even with the GF breads and desserts I rarely use them except when traveling since they then save the day. It will get easier and believe me on the diet you will not starve. However, you will gain independence from the big "D" and feel much better in the long run. Won't happen overnight but you will begin to see the light at the end of the tunnel and will get to the end of the tunnel and feel worlds better.

Maggie

[Rosie]

GRB, I'm sorry to hear that you have had such a bad flare! I don't have much to add to the excellent advice you have gotten so far, but wanted to comment on something you said:

I have benefited from Imodium but prefer the Bentyl as it doesn't bind me up and I don't have the gas.

I don't know if you are aware that some versions of Immodium and most generic versions contain lactose, a likely source of the gas. Check and see if you are taking just the plain Immodium A-D, not the advanced, chews, etc. Double check the inactive ingredients on the package. And many of us have found that we must find the dose that works best for us, like for example, cutting the pill in half. The Immodium can be a very helpful tool once we figure it out.

You lament about having to give up fresh fruit and vegetables, but hopefully that will be temporary. I found that was the case for me, but it takes some time for the gut to heal. After about 9 months of a restricted diet, I started slowly testing whether I could add back some fruits and veggies. Now I find that I can eat many more foods (strawberries, peaches, blueberries, corn on the cob) , but in moderation of course!

And to echo what Mary Beth and Maggie have said, I find that I now appreciate the food I can eat much more than I did before when I just took it for granted. I use the analogy of the rich kid who gets every toy she ever wants, and doesn't enjoy them nearly as much as the poor kid who just gets a couple of toys!

Rosie

[GRB]

Celie...Thank You for your encouragement and good wishes for my returned health. We have a lot to learn don't we? I think we are both lucky we found this website and all the kind and generous people here to help us. Good wishes to you and I hope you are being visited by Norman very soon.

Mary Beth...it's so nice to read your experiences and how things have changed for the better. It gives me hope and prevents me from entertaining negative visions of the future. Your son is absolutely correct and I will remember his wise words.

I have to say that I have noticed great improvement in ways I never expected after going on the GF/D diet. I don't have headaches, I don't wheeze and have sinus issues, I don't hurt all over my body and areas of my body that have been swollen for years had reduced swelling. In short, I feel much better with the exception of this flare.

MaggieRedwings...what a lovely name. Thank You for your encouragement and hopes for my future health. With all of you to ask questions of I don't see how I could ever feel sorry for myself...what an inspiration you all are.

Rosie...I will look for the silver lining but the memory of a crusty loaf of San Francisco sour dough will be hard to loose. I imagine, as you say, with time I'll come to terms. You sound as though you have regained many of the foods that make summer so enjoyable and like so many others you give me hope and a little more strength. I admit, this has been a challenge.

[Gabes-Apg]

GRB

When new people come on the site i wish i could offer them the magic secret that will quickly solve all the symptoms!

Making the diet/ingredient adjustment is hard work, mentally and emotionally and it will take time. I can assure you from my experience that it is definately worth it...

i will say that there are loads of similaraties across the group here , then again there are lots of differences. What works for one doesnt always work for another. It will take time to find out what works for you, and there are no real shortcuts other than the info on this site and the wisdom of the wonderful people here

there are days when i crave foods/drinks etc and within about 10 seconds the thought of chronic D quickly abates the craving!

take care

[GRB]

Thanks Gabes. I appreciate your taking the time to reply.

The Imodium I have on hand is 'multi-symptom relief'..I will have to search the various names that indicate dairy before I'd know if it is in it. I'll get some plain old Imodium and have it in the 'tool kit' for flares...all I know is I used the Imodium over the weekend because my meds couldn't be filled and I haven't had any kind of movement from Monday forward this week. I don't even know if this is common or unusual...I have some gas, no rumbling and no real pressure probably due to how little I eat. When I use Imodium I will have to reduce the amount I take.

Gabes I have found a few things that I can eat that don't upset my stomach and for now it seems that a semi liquid diet is best for me. Chicken broth is soothing and tasty. If I add a little rice, carrot and small pieces of chicken I would feel that I was getting a little protein etc. but I haven't tried it yet. I'm assuming the idea is to stay on this type of diet (what works for each of us) until we have Normans then slowly try different foods to see what is tolerated.

I agree about the thought of constant D is enough to keep me on the diet and the cravings don't last long..

I've come to accept that there is no magic answer for all the symptoms...and I'll try not to whine *smile*.

Thanks again.

[Gabes-Apg]

if you do need to whine or vent.... go for it, it helps! and we have all been there at one time or another

semi liquid diet is best for me. Chicken broth is soothing and tasty. If I add a little rice, carrot and small pieces of chicken I would feel that I was getting a little protein etc. but I haven't tried it yet. I'm assuming the idea is to stay on this type of diet (what works for each of us) until we have Normans then slowly try different foods to see what is tolerated.

Perfect that is what i did, i couldnt afford the enterolab testing so i went back to gooey rice and poached chicken (with home made stock) and progressed from there.
it takes time..... i would only try a new ingredient if i had been well for a week or more.
then with a new item, have a small portion of the ingredient, wait two days, then have another small portion etc

via this method i have confirmed insensitivity to gluten, yeast, dairy, soy.
i found that once i eliminated ALL gluten (ie all the hidden gluten) i was ok for a couple of weeks and then it was like the yeast sensitivity was then heightened, then i removed all yeast. a month later there was slight reacitons again and for years i had been ok with lactose free milk and then all of sudden i could not tolerate lactose or caesin (dairy), so eliminated that, was good for a couple of weeks, the next reaction was linked to soy.... eliminated soy and generally i am all good.

it took me about 6 months to figure all of that out.

following the advice of the PP group, i made sure i had well cooked low fibre vegetables.
avoiding the items that majority of people have reacted to is a good short cut

i tried stewed apple a couple of times and will try it again when my current unsettlements are gone.

Keep a food/reaction dairy. this will help you track what is working and what isnt working. Via this method i had figured out that i could not eat certain vegetables together in the one meal,

[GRB]

Thank You Gabes. I'm sorry it took so long for me to respond to your very helpful post. I am following your advice and have happy news. I'm not sure how to interpret it but for three days I've had Normans, 1x a day..which was my usual habit. I had to use coffee to help me overcome the inertia caused by the Imodium and this has been the result.

I am eating a diet of home made chicken stock with pieces of chicken, rice and carrots. Today I'm trying corn instead of carrots for variety. I use dried onion and salt.

I still have nausea...it comes and goes and I have no idea why. I have had no stomach pain. I am recovering from my weakness each day and I remind myself to not push myself too hard. I have lost a lot of weight which at this point is fine...I had extra.

My muscles hurt from doing things like walking up and down stairs and carrying groceries...it took me a week to have the energy and strength to go grocery shopping..but I managed it yesterday.

Life is starting to seem possible again.

I don't know what to think about this latest development but I'm staying on the GF diet and staying away from dairy as well.

[tex]

It's good to see that you're doing better. Nausea can be a symptom of many things, but two of the possibilities are dehydration, and/or an electrolyte imbalance. Be sure you're drinking plenty of water. Usually, with a hospital treatment for dehydration, the doctor/s will recommend some sort of supplement, depending on which electrolytes were out of balance, during the episode. You may need to increase your intake of potassium, or sodium, or? I'm not saying that this is the cause of your nausea, but it's a possibility. Bananas are a good source of potassium, for example.

Tex