Am having a bad MC flare

Andi · Post by **Andi** » Wed Feb 17, 2010 2:30 pm

Hi. I have not been on this site for about a year or so because I was feeling pretty good. I honestly was thinking that maybe the MC was not "real", that it was gone for good.
About a week ago I got a horrible flare, about the worst I have ever had. Not only am I having constant "D" but I am way more nauseous than I have ever been. I usually lose my appetite and have nausea when MC is flared, but not like this. I have been so sick to my stomach since last week that I have not been able to keep any food or water down. I have lost a lot of weight, my clothes are hanging on me.
In doing research online about MC, very little is mentioned of intense nausea and constant vomiting. I just wondered if anyone else has been this sick to their stomach? I am starting to wonder if I should go to emergency room for IV because I have not held down food in days. I can hold down a little water finally, but I am probably also somewhat dehydrated.
In three days I am supposed to fly across the country to Tucson to see my family and I am very worried about the trip. What happens if I feel a sudden urge for D or need to vomit on plane? What if we are supposed to be seated and I really need to get to the bathroom. Has anyone else had this situation?
Sorry if this sounds disjointed, I have just been so sick for the last week it is hard to think straight.
Hope everyone is doing well.

Gabes-Apg · Post by **Gabes-Apg** » Wed Feb 17, 2010 2:58 pm

Hi Andi
sorry ot hear you are feeling soo poorly. Constant D does do your head in! your email was not disjointed at all

when i was having chronic D before my diagnosis, it was a very hot summer in australia so i was struggling to keep up enough fluids, I went to the hospital twice for IV fluids and the first time they gave me some anti cramping meds via the iv to settle down the insides.

I am very lucky, our medical system means that i didnt have to pay for this. i baulked going the first time thinking i was overreacting, once i had the couple bags of iv fluids, i was always good for a couple of days after, slept better, and then only had electrolyte drinks and water icy poles (luckily they were GF as at the time i did not have the diagnosis )

Have you got electrolyte replacements? i read a post the other day where polly put the ingredients up to make your own. sipping this will keep your salt and sugar levels up.

The trip is your choice, Travelling in planes is very dehydrating, if you are feeling poorly it may be a challenge, only you can decide that. How long is the flight? If you have the IV fluids and get anti nausea meds you may feel well enough to travel.

take care, try not to stress (easier said than done i know)

Andi · Post by **Andi** » Wed Feb 17, 2010 3:47 pm

Hi Gabes Apg,
Thanks for the reply. Do you know where I can find where Polly posted the homemade electrolite drink? I have been drinking gatorade but it does not always stay down. With the nausea I am having a hard time keeping anything down.
I am taking Promethazine (sp?) which is for nausea but it is not doing any good.
I think an IV might help me but even with insurance I think it would be very expensive. I am hesitant to do it unless I really have to.
What do you do to control your MC now that you know you have it?
I live in Vermont, and Tucson, Az. is 3000 miles away. It is three flights out there, and three back with layovers. All total the day is about a 12 hour ordeal. I only see my family once a year so I really hate to give this trip up unless I really have to.
Until just last week i was snowshoeing, running, and living my active life. Now I can barely get myself to work in the morning.

Gabes-Apg · Post by **Gabes-Apg** » Wed Feb 17, 2010 4:27 pm

I will try and find the link for you now.

i have been relatively lucky. Since my diagnosis in late Dec 09, I have not had a major relapse.
I have been really really careful with my diet. If i have some D and stomach unsettlement i go back to really gooey rice soup, overboil the rice do not drain it, sip the starchy liquid and have a bit of the soft rice, and I have Jelly. (i think you call it jello)
both of these are soothing and easy for your body to digest, eat small amounts slowly.

SInce the initial chronic attack and diagnosis, under advice of my naturopath and acupuncturist i have been treating my digestion a bit like you do a baby when they start solids, starting with gooey food and small amount of ingredients and then gradually increasing the ingredients. My digestion likes meals where veges etc are cooked well and it is gooey. I can have a salad here and there but not very often. I have not progressed to fruit yet...
so i have risotto's, stir frys, frittata's and lots of mashed veges.
(for breaky i have warmed up mashed veges and a poached egg)

my eating plan is GF/YF/LF
medication wise I am doing questran lite drink of a night (this absorbs excess bile salts and liquid)
in the past 2 months, I have halved the dose required. and i have loperamide for days when symptoms start whilst i am at work. I went off the anti inflammatory the GI specialist had me on as its main side effects where headaches and diarrhea (go figure) and i was sick of waking up with headaches
Natural - liquid zinc in juice once a day, small dose of golden seal to help cell healing. acupuncture every 3 weeks.

most of my days are good. if i eat a new ingredient or meal type, or have too much stress at work then i start having frequent small quantity BM (6 - 8 times a day) it is not full on D, but it is the type of thing that i get short notice message and have to do a quick walk to the toilet

that is a big trip to be embarking on! If it was me i would want to feel at least 75% to brave it. I assume you are travelling alone

reading the posts on this forum, the MC demon will very likely raise its head at the most inconveniencing times, there will be good days and bad days and we dont always get to pre plan these!!! I can understand your frustration given you were feeling fantastic a week ago.

Risk assessment and management is my job so excuse these questions.... I am just trying to help you make the decison that is stressing you (and i am a bit of a devils advocate type where i ask the yucky questions

if you do the trip and get sick along the way will your insurance cover you for that?
if you do the trip and get really sick once you are there what is the situation with your flights and work?

i ask these questions as a little bit of outlay to do the IV now may alleviate a worse situation if you do the trip......

i will go digging for the polly's recipe now....

Gabes-Apg · Post by **Gabes-Apg** » Wed Feb 17, 2010 4:30 pm

THis thread mentions quite a few good tonics to have during a flare

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11030

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11030

(i hope i have posted this right)

still digging for polly's recipe

Gabes-Apg · Post by **Gabes-Apg** » Wed Feb 17, 2010 4:46 pm

Found it! it was in the newbies area

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

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

Hang in there Andi!!! dont let this demon beat you. we are all here to help you with the battle.

JLH · Post by **JLH** » Wed Feb 17, 2010 4:48 pm

Hi, Andi. Sorry to hear of your terrible flare. If you do decide to go, maybe a doctor's note would help you have access to the bathroom on the plane at all times.

Unless something changes drastically, you really sound too sick to make that kind of trip. JMHO.

Andi · Post by **Andi** » Wed Feb 17, 2010 5:43 pm

Gabes and JLH,
Thank you so much for the replies. I really may have to cancel the trip and that upsets me.
Gabes, I am going to print out the recipe tips you gave me, it really helps.
Yes, my insurance will cover me no matter where i am. I am not travelling alone, my partner Dave is coming with me.
I dont really know what the situation will be with flights. I dont want to get out there and not be able to get home.
I am feeling so sick right now, I just dont know what to do.
I made a doctor appt. for first thing tomorrow morning, maybe they will be able to prescribe a stronger anti-diarrhea pill and anti-nausea pill.
This is definitely depressing, I was just sitting here crying until I read your messages.

Gabes-Apg · Post by **Gabes-Apg** » Wed Feb 17, 2010 6:05 pm

You are allowed to cry and wallow - dealing with this shite (and yes the punn is intended) can be overwhelming.

I am relieved that you have your partner so there is someone helping to look after you.....

take it day at a time - see what the doctor can do any meds that you absorb IV rather than digestion will have greater effect.

Keep us updated, even if it is to vent your frustration!

take care

Post by **tex** » Wed Feb 17, 2010 6:06 pm

Hi Andi,

I'm so sorry to hear that you're experiencing a flair, let alone such an intense one. If you can, try to eat a banana or two, occasionally, because potassium seems to be the main electrolyte issue that we have with dehydration, but of course they all are important. Here are the signs to be aware of, for deciding whether/when to go to the ER:

http://www.symptomsofdehydration.com/

I agree with Joan, if I were in your shoes, I would be very hesitant to attempt to make all those flights. Also, in your current condition, you probably wouldn't be able to enjoy the visit with your family, since there wouldn't be much that you would be physically able to do. Is there no other time when you could visit them?

If you decide to go anyway, please check with the airlines on their current policies regarding bathroom use. I doubt that they are going to be willing to allow you to use the bathroom at certain times, (especially close to takeoff/landing times). You would definitely want a letter from your doctor, if you do this, to allow you to use special seating, and receive special consideration. Be sure to send each airline a copy of the letter ahead of time, so that they are aware of your situation, and keep a copy of the letter with you at all times, also. Since MC can now be claimed as a disability, that letter should gain you more privileges with the airlines than anything else you could do or say. To be honest, though, I'm not absolutely sure that the Americans With Disabilities Act applies in the air. There may be restrictions and limitations - I've never looked that up.

http://www.perskyfarms.com/phpBB2/viewt ... ine+letter

The skies are not nearly as friendly since 9/11, and the recent economic downturn has added to the problems, of course. Airlines are forced to be concerned much more with security, and less with individual customer satisfaction.

Good luck, whatever you decide to do.

Tex

Andi · Post by **Andi** » Wed Feb 17, 2010 7:21 pm

Gabes,
I will definitely let you know what happens. Right now it is looking 50/50 for trip.

Tex,
Long time since we chatted. I have read a few posts referring to you being in the hospital. I have not been around for a while so I dont know what you were in for. You have always been a good friend to everyone on this board and I am wishing only the best for you.
Thank you for the links, I am about to read them. I think I am getting dangerously close to total dehydration. I have tried to eat a banana each day but it does not stay down for long.
I have had MC for many years (although not formally diagnosed until Aug. 08) and although it has been horrible, this is the worst it has been.
MC is now recognized as a disability? Can you send me a link to that? I did not know that.
Please take care of yourself, everyone on this forum needs your advice and words of encourgment.

Polly · Post by **Polly** » Wed Feb 17, 2010 7:22 pm

Hi Andi!

So sorry to hear about your miserable flare. Dehydration/electrolyte imbalance should be your main concern at this point. Please don't ever hesitate to go to an E.R. to have this evaluated. Not to scare you, but this can be a life or death situation. A good rule of thumb is that if you even think you may be dehydrated (copious diarrhea and vomiting, less urination, a feeling of "fading out", dry mucus mambranes) then GO TO THE E.R. If I were you I would not travel by plane until much better.

Have you considered getting Dr. Fine's stool tests to see if you are intolerant to any foods? Since so many of us here with MC have food intolerances, that may be a good next step to try to get a handle on your recurring diarrhea. Check it out at www.enterolab.com

It looks as if Gabes has provided you with the link to the fluids that help. Gatorade does not sit well with me - I cannot tolerate all of that sugar, but fortunately there are other options.

Glad you will see your doc tomorrow. Feel better!!!

Love,

Polly

Post by **tex** » Wed Feb 17, 2010 8:07 pm

Andi,

I was simply referring to the fact that it appears to be covered by the Americans With Disabilities Act. Remember posting this?

http://www.perskyfarms.com/phpBB2/viewt ... lities+act

I certainly agree with Polly - if you feel that you are dehydrated, you probably are.

Thanks for the kind words of support. In a nutshell, my recent hospital visit was due to massive bleeding. My entire colon was removed, after they couldn't pinpoint the source, or sources of bleeding. I have to constantly be aware of the possibility of dehydration, now too, since I no longer have a colon to extract and recycle the water in my fecal stream.

Tex

JoAnn · Post by **JoAnn** » Wed Feb 17, 2010 8:38 pm

Hi Andi, I don't know if this will help or how you feel about medication, but I had a flare just before Christmas and I suffered through the holidays because I didn't want to go back on entocort and I tried to get back to "normal" by eating very restrictively. Things just went dowhnill because as Tex pointed out, my immune system kicked into high gear during that time. I finally went to my pcp on Jan 19. She immediately put me on prednisone which stopped all my stomach and D issues immediately. I was on a small dose for 5 days, shifted back to the entocort full dose for 2 weeks, down to 2 pills for two weeks and will be on one pill next week. I've been doing great and the lesson I learned for me is that if I ever have a flare like that again, I will immediately go in and get meds. I had read scary things about prednisone, but I felt great on it and it stopped my flare immediately. I even thought that when I travel in the future, I might ask my pcp for a prescription to take along in case of a flare. I'm from Arizona originally and love Tucson. I had to miss a trip to Hawaii last year when I was coping with getting my mc under control. I wish I would have discovered this board a few months before I did and then I may have been able to make that trip. By the way, I'm gf,df,sf, and ef and I am using Dmannose to help manage my mc. Good luck, JoAnn

Andi · Post by **Andi** » Thu Feb 18, 2010 6:39 am

Tex,
I am so sorry to hear about your operation. Having a colon removed is intense, I cannot imagine it.
How are you doing?
I had forgotten that I posted that link about Americans with Disabilities, it was a while ago. Thanks for reminding me.

JoAnn,
Thank you for your post. As sick as I am I just am not ready to try a hard core steroid, they really scare me. When I am not in a flare I am very athletic and I dont know how it will affect that. I try not to take as little medications as possible. Did you have any side effects at all?
I am really happy it helped you and that you are doing so well.
I am from Tucson also. I was not born there but I spent most of my life there until I moved to Vermont about 20 years ago.