When is a flare a flare??

Post by **tex** » Wed Oct 29, 2014 12:10 pm

Anne,

I was going to mention that onions would have done me in when I was recovering, but I see that Hopeful has already done that. Many of us cannot tolerate onions until after we have been in remission for a while.

Regarding the right sided pain, some of us are just more sensitive to pain from expansion of the gut (due to gas or C) than others. Since there are virtually no pain sensors in the interior of the gut (they are all on the serosa [the outer circumference]), that suggests that the pain is probably mostly due to enlargement/stretching of the gut caused by gas or formed stool.

Incidentally, the lack of pain sensors in the mucosa of the gut is the main reason why MC is considered by doctors to be a pain-free syndrome (because it only affects the mucosa of the epithelium, whereas Crohn's and UC also affect the submucosal layers and in severe cases, the serosa).

When it comes to hot tea, the Twinnings Earl Grey is my favorite, too.

Tex

coryhub · Post by **coryhub** » Wed Oct 29, 2014 12:18 pm

Hi Anne,

That is a good question you posed. When is a flare a flare? For me a flare is when I consider my quality of life affected. Discomfort at work, too fatigued to socialize, hungry but afraid to put food in my mouth, depressed. It's not so much how many BM's I have but more how my gut feels. Has the dull burning ache returned not to go away. When I am flared my worst symptom is a low-grade, dull headache that can last 2 - 3 days. As Nick said, it's a miserable state to be in but we can't beat ourselves up because it's often nothing we have done. In my experience, there's often no rhyme or reason to how I ended up back in such a state. My thought is not to reason why but to get back to basics and hope I can quickly recover. MC makes me appreciate a good day more than ever before.

Wishing you a speedy recovery!
Cory

fatbuster205 · Post by **fatbuster205** » Wed Oct 29, 2014 5:05 pm

Jean - be assured, no offence taken!!!

I totally get where you are coming from. For me it is as much about lifestyle as anything. Even sorting myself out with a packed lunch rarely happens so I end up having to compromise and that is almost certainly not helping! I think that soya yoghurts are the main culprit that has initiated this flare up but why the pain is as severe is a puzzle!:???:

Luckily my GP has ruled out impaction - my belly is tender, particularly on RHS, but it is soft! He has advised me to stick to a simple diet and "definitely stay off the gluten" (so I have won him round on that one!). He wants me to contact my Consultant because I need a colonoscopy. He thinks he [the Consultant] will want to do it while I'm in flare but we'll see!

Theresa, thank you for your comments. That is interesting and something I might raise with him when I see him. I know from the two previous colonoscopies there were no visible signs of UC. The pain I am experiencing, which escalated so severely on Monday, has been mumbling in the background for a week or so prior to the acute episode and I am still sore but the painkillers are helping!

And Hopeful, I must admit that onions in excess cause me problems, I generally seem to be able to tolerate small amounts. I make batches of soup 3 litres at a time containing two medium onions, and I find that dilution is tolerable. Certainly my system is calming down with the chicken soup and rice only diet. I also drink Earl Grey Tea and one or two real coffees (not instant). Tomorrow I am going to introduce apple juice to just boost the calorie intake.

And Jean/Gabes, I discussed supplements with my GP and he said pretty much exactly what you said!!! Yes introduce them but gently and probably not for another week or until the pain has subsided. In other words, don't introduce too many things too quickly in order to identify obvious triggers.

Apologies - this is quite a long post! But it is great to hear your varying experiences and thoughts. Wouldn't it be great if we had a "one size fits all" way of dealing with this disease!!! And the new pain killers plus the antispasmodic that I got today are working which is the first real relief from pain for a few days!! Bliss! Happy Friday Eve tomorrow!!!
Anne

fatbuster205 · Post by **fatbuster205** » Wed Oct 29, 2014 5:09 pm

Thanks Tex/Cory,
We must have been writing at the same time!!!
Anne

JFR · Post by **JFR** » Wed Oct 29, 2014 5:24 pm

fatbuster205 wrote:the Post Office here in Carrickfergus (tiny town) :

Strangely enough I have heard of Carrickfergus, but only the song. It's one of my favorites.

Jean

megamoxie · Post by **megamoxie** » Wed Oct 29, 2014 7:33 pm

It really stinks to think that you have things in control, and then find that you don't.

I nod in agreement with all the sound and sage advice you have already received here. The only thing I have to add is a recommendation to try a mindfulness practice or other form of stress management. I completely sympathize on the work stress (I work for a Fortune 25 company), and I have found this helpful.

Gabes-Apg · Post by **Gabes-Apg** » Wed Oct 29, 2014 10:53 pm

Anne, in line with the suggestion above, I too use audio books, podcasts, guided meditation on mindfullness, acceptance of what is, etc.
When I was working, i would listen to them before work, at lunchtime, after work etc.
Even now with frequent sleep interuption, i use them to keep the mind calm and at peace during periods of insomnia.

also, with your reply above, I would encourage you to spend some time on the weekends preparing safe meals so that you have pre-prepared lunches for the week. Having low inflammation, gut healing, safe ingredient, meals each day to support you, is essential.

take care
hope the pain has reduced with some rest

nerdhume · Post by **nerdhume** » Thu Oct 30, 2014 4:22 am

I have always kept a bag of 'seasoning mix' in the freezer. With just the two of us I would always end up wasting an onion if I needed just a little for seasoning. I would still buy a whole onion if needed for a recipe. Oddly enough I do ok with the frozen onions cooked in soup etc. The fresh ones send me running (even though they are cooked).

megamoxie · Post by **megamoxie** » Thu Oct 30, 2014 4:35 am

Hello Anne-
I agree with Gabes - it is critically important to ensure that your food supply stays safe. It is one of the few things that we really can control. It takes time and preparation, but it is so worth it.

I have had many times in my journey when at first, I have thought "I cannot possibly..." (fill in the blank). Challenging that idea, I have found that while something may be right royally inconvenient, more often than not, it actually is possible, but I have to change my thinking/routine/habits. I try to pack (or at least plan) my next day's meal and prepare my work outfit the night before. Then, in the morning I can get myself ready and get out the door without the stressful scramble. Things always seem to take longer than I anticipate, and in the mornings I have a limited amount of time. If I try to do everything in the morning, this adds stress, which can be about as bad for this condition as eating a creampuff.

If you are a reader, you might enjoy and find value in The Power of Habit by Charles Duhigg.

One thing that works for me is giving myself little rewards (a.k.a. bribes) for successfully making the habit changes I'm trying to make (such as springing for French manicure, magazine, pair of wild socks, knitting pattern/yarn, etc...). I have usually found that my thoughts/stories about, and resistance to changes are more onerous than the changes themselves. It's typically only a struggle for the first four days.

I hope that you feel better soon!

Meg

fatbuster205 · Post by **fatbuster205** » Thu Oct 30, 2014 7:51 am

Thank you all for your kind suggestions and good thoughts! This morning I made it as far as the station platform and a minute before the train arrived I turned tail feeling nauseous as I could feel the pain building again and headed back to the sofa! I phoned the hospital and spoke to the IBD Nurse who has put me back on 9mg budesonide and she is going to speak to the consultant when he is back in on Monday. Have to confess to feeling pretty low and tearful today.

I hope to sleep most of the day to let the gut relax some.

Jean, Carrickfergus is a tiny town but with loads of history including an 800 year old castle which is still standing! The song is nice too!

Post by **tex** » Thu Oct 30, 2014 9:32 am

Theresa wrote:Oddly enough I do ok with the frozen onions cooked in soup etc. The fresh ones send me running (even though they are cooked).

That's an interesting observation. Freezing fractures cells as the ice crystals cause them to rupture. Apparently that makes them more easily digested. Of course it also destroys the original texture, but I wonder if that would work with other vegetables to make them easier to digest, especially while we are recovering.

Thinking back, I ate a fair amount of broccoli and occasional spinach or turnip greens while I was recovering, with no apparent problems, other than a small amount of gas from broccoli. They were always frozen, never fresh. Hmmmmm.

Tex

Post by **tex** » Thu Oct 30, 2014 9:42 am

Meg wrote:Things always seem to take longer than I anticipate, and in the mornings I have a limited amount of time. If I try to do everything in the morning, this adds stress, which can be about as bad for this condition as eating a creampuff.

Very good point! Starting off the day by loading up with stress right off the bat, and then carrying that stress with us as we go out the door, is an invitation for MC to swarm on us all day long. The lower our stress level as we begin our day, the lower it is likely to remain for the rest of the day, and the better our overall odds of having a good day.

Tex

fatbuster205 · Post by **fatbuster205** » Thu Oct 30, 2014 9:48 am

tex wrote:
Theresa wrote:Oddly enough I do ok with the frozen onions cooked in soup etc. The fresh ones send me running (even though they are cooked).
That's an interesting observation. Freezing fractures cells as the ice crystals cause them to rupture. Apparently that makes them more easily digested. Of course it also destroys the original texture, but I wonder if that would work with other vegetables to make them easier to digest, especially while we are recovering.

Hmmmmm.

Tex

And maybe the fact that I use an electric chopper to chop the onions really finally and once I have made my soup I blitz it so that it is a smooth soup (I hate soup with "bits" in it) also destroys the original structure?? We may be on to something here?

fatbuster205 · Post by **fatbuster205** » Thu Oct 30, 2014 9:50 am

tex wrote:
Meg wrote:Things always seem to take longer than I anticipate, and in the mornings I have a limited amount of time. If I try to do everything in the morning, this adds stress, which can be about as bad for this condition as eating a creampuff.
Very good point! Starting off the day by loading up with stress right off the bat, and then carrying that stress with us as we go out the door, is an invitation for MC to swarm on us all day long. The lower our stress level as we begin our day, the lower it is likely to remain for the rest of the day, and the better our overall odds of having a good day.

Tex

I totally agree with both comments! I deliberately try and keep my stress to a minimum in the mornings because it does not help at all particularly when you are trying to get out the door and keep needing the loo!

Post by **tex** » Thu Oct 30, 2014 9:59 am

Anne,

Your experience this morning was frustrating, but certainly not unusual with MC. When I was trying to recover, many is the day when I would go to work, load the truck and take off to make the day's deliveries, only to be overcome by nausea as soon as I traveled a few miles down the road. I would pull off the road, either lean back in the seat, or lie down on the seat (depending on on how sick I felt), and try to rest and wait it out. After about a half a hour or so I usually felt well enough to continue, but more often than not, I would only get another 15 or 20 more miles down the road before having to pull over and do it all over again.

Luckily most of my driving was out in the countryside, and in small towns, so that I didn't have to contend with big city traffic. I can remember a few trips where I had to pull over 4 or 5 times, and I wondered if I would ever get back home. And of course, I wished that I had stayed at home in bed in the first place.

I hope you feel much better soon.

Tex