Friday at School

So earlier this week I painted my bulletin boards black. I've been sitting with it, and it's just not me. doesn't make me happy to look at, and seems like it sucks the energy out of the room. Here's the transformation:

 Board divided into 4 sections, one for each season

Sky painted in, green trim done. This took about an hour.

Grass, trees, water added. Sun started.

5 hours into it. Not done, but a good stopping point.

Sigmoidscopy Thursday

So I've been taking nicorette gum, and there's no damn difference.

I went in Thursday to get a sigmoidoscopy (lights, camera, rectum!). I've lost 8 lbs in 2 weeks and my blood pressure is up. Turns out increased bp is a side effect of nicotine.

They took some biopsies, and at the end I got to turn my head around and he showed me my insides!

It was smooth and pink with lil white ulcers. He said normally one should be able to see blood vessels, but because of the inflammation, couldnt see any. He said it looked like moderate pancolitis rather than severe.

I asked him about diets, and he said the ones that do best are "elemental". I asked what he meant by that. He meant basic, simple, unprocessed foods. Probably what macrobiotics were in the 70's.

So nicotine is out. I've always had low blood pressure and I do NOT need high bp too on top of this.

Doc put me on prednisone, told me to take calcium and vitamin D too, and report back in a week

Tuesday

Today was a new experience.

I didn't have the energy to do much of anything. I had wanted to go to school and at least get the other bulletin board painted, but realized I was mentally forcing myself to gear up for the idea. Seeing that enabled me to say no, stay home.

My cramping was bad this morning, and I took an Imodium. By 11 I realized I was prolly dehydrated, and I downed a quart of gatorade, and then filled up a bottle (old gatorade bottle) with water and aloe vera juice. I did take my morning glutamine in water too.

Around 2:30 I was feeling better, and made a lunch for myself of sardines on toast. My fiance is from Britain, and apparently they love sardines on toast there. I drained the can, put the fish (boneless, cooked) into a bowl and added garlic powder, salt and dried thyme. Mixed it all up. Smell is like that of tuna fish, don't know why I thought it would be bad, but it wasn't.

A slice of sprouted grain bread in the toaster, and when it's done add the sardine spread on top. Broil in toaster oven a few minutes.

It was good! Sardines are supposed to be good for those with UC problems. I will say I didn't immediately have to pop to the pot, which was good. I also ate the other half of the cooked peach, and later indulged in Garlic and Herb Pita Chips. I worry that food will make me ill, that I need to learn about feeding my body the right food to make it well. I know there's no guarantee for anything making me better, but I have to try.

Around 5 I got the energy to go through my closet and bag some more clothes for goodwill. I want my closet to be orderly when I start teaching next month. It'll lessen my stress.

I was supposed to get some in depth science training this week and next. I emailed the head though and canceled on account of me being "sick".

Sick just doesn't cover what it's like to live with UC.

Monday

So Sunday I had a horrible time, back and forth to the toilet all the day long. By 4 in the afternoon I took 2 Imodium and stopped eating and drinking.

Monday I'm good. Didn't spend hours on the pot, but didn't eat as I had places to go and things to do.

I started work in my new classroom. I'm a bit bummed that it looks like it doesn't have an ActivInspire board, just a projector. The cork in the bulletin boards were gross. The teachers here paint their boards and mine hadn't been done, so I went out to Ace and got some black. I finished one of the boards before I had to go.

I also moved the desks and bookcases and students desks (with the help of my "steel skateboard") and finally got an arrangement that I think will work for me.

Being in that room, looking at the desks, brought home the reality to me that I'm teaching something entirely new. I don't know what the year will look like, as I did for so many years at my previous school. I took a deep breath and thought "what would I do for 2nd semester of kindergarten?" Then I think of it as an extended version of that.

When I got home this afternoon I took a really ripe peach, sliced it up, and cooked it in a pan with some butter and vanilla. It didn't immediately send me to the bathroom. Yay!

I was extremely tired, from all the work combined with no food for 24 hours so I napped. Got up when Fiance came home with tilapia for me. Cooked that up for dinner with dill and lemon.

The act of chewing made me bolt to the bathroom a couple times, but after dinner I wasn't running there.

Just before bed I ate an overly ripe banana. I need to remember not to eat so close to bedtime, as it stimulates my GI tract.

All in all a good day. I felt normal, except for not eating. I wasn't hungry tho. Oh! I also got glutimate powder today and started it. 1 heaping tsp in water on an empty stomach, twice day. We'll see if it helps.

Finally heard back from my Gastro Dr. He wants to do an exam on me before prescribing prednisone, so I have a 9:45 appointment on Thursday. 

Interesting post

Found this at http://drstevenenningerdailyblog.blogspot.com/2011/01/why-people-with-colitis-and-crohn.html

Why people with Colitis and Crohn's Disease Experience Anxiety

After years of having ulcerative colitis I became afflicted with an overwhelming anxiety. Now I know that this was part of an underlying imbalance created by the disease process. At the time however, I didn't know what was going on and it was a real struggle for me from that point on to be a functional human being. 

After my years of practice I now have a better understanding of how chronic inflammation can create anxiety and other forms of emotional illness. Because of this, I continue to find ways to have a less judgmental attitude of myself and what I have considered to be my own weaknesses. If you have suffered from a chronic disease or are suffering from one you know what I mean by that. 

One interesting fact that I just ran across was the role of glutamine in our intestines and its relationship to anxiety. Glutamine is the most abundant amino acid in our blood.[2] The greatest consumer of glutamine in the body is the intestine. [2] Studies have shown that when the body is using its own tissue for emergency healing (injuries, etc) then supplementations with glutamine is helpful or essential for healing. [8] The inflammatory bowel diseases mimic an emergency injury state by both depriving the body of amino acids through lack of absorption and by requiring repair themselves. 

Glutamine in the blood is converted to L-Glutamate and then in the presence of vitamin B-6 it is converted to GABA. It is deficient GABA that is linked to anxiety. There are GABA-A and GABA-B receptors on our nerve cells. It is easiest to think of GABA as the brakes on the brain. It is GABA that helps us prevent the racing brain syndrome that we experience as anxiety. 

Through chronic inflammatory disease we not only lower our blood glutamine levels, we end up reducing our GABA levels and creating the chronic anxiety picture associated with chronic disease.

A day at the park

So today one of my former students was having a birthday party at a park, and then they were planning on an outing to a planetarium.

I dressed (used Big Girl Pampers), used the pot before I left, and tucked an extra BGP in my purse. About halfway to the park I felt the urge coming on. I pulled into a Taco Bell but didn't quite make it to the bathroom before it hit. Thank goodness for the extra, right?  While I'm embarrassed to wear them, they do provide a sense of relief that I'm not going to mess up clothing.

The park time went fine. I didn't eat at all there. There was grapes, watermelon, hummus, pita bread, chips, and of course cake. I sipped on water the whole time. Even though there was a bathroom right at the pavilion, I didn't want to start the rollercoaster of a bathroom dance with everyone there. It was weird not participating in the eating. A bit like being a non-smoker with "everyone else"  outside taking a smoke break

The rest of the events went fine, and I ate when I came home, knowing I wouldn't have to go out again.

I started on Nicorette today. There are studies that show results in UC with nicotine. There are even people talking about good results with it on the UK colitis board. So far I had 2 pieces of 2mg gum today. Doesn't make me feel any different.

I wish tomorrow were Monday so I could call my Gastro Dr and tell him how bad things have gotten since I saw him on June 30th. I left a message with his assistant's voicemail Friday but never heard back. (The doc was out of office).

Blessings count:
My fiance is being understanding about my "shitty" problem.
BGP makes traveling a little less stressful
My dogs love me
Currently I don't have to be officially back at work till August (though I'll set up my room soon)
I do have insurance
I have a roof over my head


Guess that's it for today.

Ulcerative Colitis

Hi, my name's Raene, I'm 42 and I have Ulcerative Colitis, or UC for short.

UC is when the body's immune system in the colon, starts attacking the colon. The colon gets inflamed, and ulcers are created that bleed. The colon doesn't absorb water like it should. The effect this has on bowel movements include cramping, diarrhea, nausea, bloody bowel, frequent urges to go, and stool incontinence.  The effect on the body is tiredness and dehydration. I have had all of the above.

I suffered for a year with it, not knowing what it was. I thought, "Gee, I'm just stressed" or "wow, I really ate something bad" or "Maybe I'm gluten intolerant" or "Maybe it's IBS" or "Perhaps it's hemorrhoids."

The first time blood was present, I went to my general practitioner. He did an exam (stuck his finger up my behiny) and declared no blood- perhaps it was hemorrhoids.  As to the diarrhea, so bad that sometimes I didn't make it to the bathroom - he gave me a Rx.

So I continued to suffer. I intended last summer to get a colonoscopy, but put it off- not wanting to face the process, or the possibility of the big C (cancer).

I should tell you I'm a teacher, and most of my years has been teaching kindergarten. This past year I've survived at work because we always had a bathroom connected to our room, and I had an assistant.

My day:
wake up 4:30 or earlier with urges to go to bathroom. Sit for a spell, endure the cramps, let it all out. go back to bed. Five minutes later, up again, same thing. Go back. Ten minutes later, back to the toilet. I call this the Bathroom Dance. It usually went on for an hour, with less and less ending up in the pot, but the urges were no less real. I knew every time I got out of bed it disturbed my fiance, so I took to laying down on a pile of clothes in my walk- in closet.

After "dancing spell" is over, I get ready for work, and hit the bathroom one more time (or two, or come back to the house before I'm out of the driveway) before getting in the car.

I stop for breakfast, take it to work and eat it, knowing that the act of eating will put me in a bathroom dance again, though not for an hour.

About 2 hours after lunch, got to go again- but not a huge dance. Two hours after that, when kids are gone- The dance begins again. Half an hour later, I'm good to make it home.

Have dinner, do a dance again. Go to sleep- if I'm lucky, my bowels won't wake me up at 2:45.
 
I suffered like this for quite some time. What made me finally go get a colonoscopy was that I started having waves of nausea and then cramping.

I made the appointment and the nurse went through my symptoms and she was the first to look at me incredulously- how had I been living like this for over a year? She was the first person that let me know I wasn't crazy, this wasn't all in my brain, and that I had something seriously wrong.

Perhaps another day I'll go into the colonoscopy prep and exam- suffice to say they put me to sleep for the whole thing.

At the results meeting, my doctor told me there are three kinds of colitis, differentiated by where in the colon the ulcers and inflammation occur. I have pan colitis, meaning it's all over from beginning to end. He said science really doesn't know yet what causes this, that it's the immune system attacking my colon. It's not catching, and they think it's genetic.

So he put me on a Rx called Lialda, and the differences wehe like night and day. Granted, I was taking three large pills every morning- but hurray! for not crapping my pants.

In June I started to have a "flare up", and needed to get it under control. I called and he upped me to 4 pills a day, and wanted to see me the following week. At that meeting he said if it gets worse, or doesn't get better, they have to switch Rx. I'd be going off Lialda and onto steroids and immunosupressants.

I didn't want to go that route, and tried ginger as well as aloe vera juice. I think the ginger made it worse, (too spicy) but the aloe may have helped a little. At least it felt like it calmed my intestines for a short time.

When the flare up started, I was having more severe cramping, and more frequent urges. Now however, it's totally watery.  I had things to do today, and couldn't sit at home on the toilet, so I didn't eat till I was back from my first outing. Afraid to eat is more like it. Afraid that if I eat, it'll start the gastro-engine and I'd be doing a dance, or worse (being out and not making it to a bathroom in time). I had a small lunch, napped for 2 hours (didn't get proper sleep last night because of bathroom dancing) got up, had a banana, but was still afraid that it'd trigger me during my second outing.

After second outing, I was enroute to the store and didn't make it to the bathroom in time. I'm literally tired of this shit. Even though it's mostly water, I'm tired of it.

I bought some Ensure, Gatoraid, Kefir, and.... big girl pampers. Sigh.

I hate that it's come to this. I know I'll see my gastroenterologist next week, and start on the new meds. While I like the thought of the steroids making me super productive as I start to set up my classroom, I'm not looking forward to not being able to rest. I'm wary of something lowering my immune system when I'll be around kids all day.

But it is what it is.