Same ol’, Same ol’…

What can I say? I’m still the girl with Colitis. I’m still walking around like an old person, holding my tummy like I’m pregnant. I’m still limited to where I can go, how long I can stay away from a bathroom, and how long I can stand up.

I don’t want to go back to Prednisone. I’ve already had to buy ALL new clothes because I can’t shake the extra 10lbs that I gained. I’m taking 1500mg of Tylenol in the morning just to take the edge off long enough to get my girl to the bus stop.

My brain is back in a fog, so I don’t feel like doing too much but sit on the couch. It’s been hard to regulate my diet because of it. I’m just keeping the meals small & simple, but keeping the carbs low instead of eliminating them entirely. I wanted to keep to the Paleo as much as I can, but it’s hard if I can’t get to the stove or the store. Fish, for some reason, always makes my tummy happy. And I’ve added some fermented foods, probiotic drinks like Kevita, & miso soup.

So in desperation, not knowing what else to do, I went to the vitamin store & got  Renew Life’s “Intestinal Bowel Support” pack. It’s been almost a week, and it’s already helping enough to get me off the couch a bit more. Better than I expected.

Someone mentioned to me to try probiotic retention enemas, so I may take another trip to the vitamin store. AND I came across another blog mentioning of vitamin E retention enemas daily that helped “cure” their ulcerative colitis. I think I’m going to try the probiotic first.

It’s not the  “gross” factor that bothers me about retention enemas. Very little grosses me out. It’s that I’ve already had 4 years experience with them:  Rowasa Enemas, every night. AND through a pregnancy, too!  YOU try having a 7lb baby in your belly as you’re crouched over in the “child” yoga pose, sticking something up your as*, and KEEPING it from coming back out!  “Humbling” is not the word.And worse, it really did NOTHING for me. I only did it because the doctor told me to.

I think it’s time to plan another trip. It’s still early in the game, but it’s possible that I’ve had ulcerative colitis so long, I’ll need more than 1500 worms to help out my plumbing. I need more doses of the little guys.

I’m still hopeful. I am. No really, I am. But the brain fog makes me seem more indifferent than hopeful. And there’s been so much that’s happened in my life recently — new house, new school district for my daughter, divorce final (that’s actually good news), family upsets — that I’ve just been pushing through the pain in order to take care of the outside world. Now that I’m moved and settled and happy where I am, I can focus more on the “inside world”, and heal myself.

Worm Flu?

I was on the Caveman diet for a week. Doing pretty well. Bowel movements still not formed, but easier to pass. I think it was due to all the salmon I was eating. Tummy was manageable. Energy was marginal, but spirits were good.

Then I went out & had 3 beers. And it all went downhill. I got sicker than normal, and it has lasted me a few days now. Passed a lot of blood the first two days after. Now it’s been about 4 days since my little “binge” and I still feel like I just had a colitis attack — which feels like the flu, with muscle weakness and irritable belly.

I don’t drink much, but 3 beers would not normally affect me so bad. I think this is correlating with the last dose that I took. Remember the blood I passed 13 days after the first dose? Well, that’s what I think this is all due to. Even though I’m still on 7.5mg of Prednisone, I lost a lot of blood. Day 13, the worms are supposed to be attaching themselves to the intestinal wall.

So… I believe I’m experiencing Worm Flu.

I went off my diet for two days after, but still limited the carbs to a sandwich — nothing else, like rice or potatoes or anything like that. And a bit of cheese. Two days now, I’m back on the diet. But I’m not seeing any benefits to it right away, like I did when I started this. Worm Flu might be around for awhile.

I still think this Paleo Diet is totally for me. I’ve had terrific results with it. Just right now, for some reason, it’s no match for the Worm Flu. I’ve been taking 1200mg of Tylenol every other morning. And I’ve been trying to get a lot of rest. A lot. Well… as much as a single mom can get. :p

 

Caveman Wins!

My tummy thanks me. It’s letting me stand up straight again. Did Caveman stand up straight?

So Paleo Diet is winning. Carbs are lonely and neglected, sitting on my counters. I may have to throw them out. I hate to waste food, but they have little use here anymore.

Yesterday was the 4th of July, so I did cheat a little. Two hamburgers & 3 beers. But even 2 buns are less than I would normally consume in carbs in a day. I felt mild tummy discomfort after.

Only 3 lbs weight loss. Actually, that’s a pound a day. I haven’t increased my activity yet. Just a walk here & there. My energy level has not really increased all that much yet. I plan to add some kind of mild exercise & see if I can maintain it. I feel like I’m actually eating MORE food, though I don’t think that’s really the case. And the Paleo Krunch is so far the main food that curbs the carb craves.

Oh… something else. Less running to the bathroom. Less bowel movements. And the blood in the stool has drastically decreased. Very good news, since I have to start tapering off the Prednisone for the second time. Can I wish to never have to go on another Prednisone round again???

Boy, Am I Full! (Day 47)

I’ll say it again:  I have a HARD time sticking to diets. I don’t like preparing food. I grab & go everything. And I LOVE food. I wouldn’t say I eat a lot, but I especially love my breads. I grew up eating off of large, hard-crust Italian loaves. Don’t even need butter. Yum.

But the Paleo Diet forbids it. And I must obey.

Yesterday, I took my trip to the health food store. My tummy was too irritable to browse, so I quickly picked up my walnuts and fermented slaw (mix of carrots & cabbage & such). And I REALLY stuck with the no-carb rule. Had salmon & cauliflower for lunch. Snacked on the stuff I got from Steve’s Originals the rest of the day: jerky, coconut, and their version of  “cereal” that is just OUT of this world called Paleo Krunch.

Today, my only cheat was that the omelet of  egg, steak & mushrooms that I ordered at a Sunday brunch came in burrito form. Otherwise, I’ve been good. And full. Really full. Helps to keep me from the “treats” that I’ve been offered.

And I felt like taking a walk. So I did. Outside. More than an arms length from the bathroom, mind you. Big deal for me. And when I start feeling the compulsion to look up workout plans, I also know I’m feeling better.

So far so good.

 

 

 

Aaaaand 3! (Day 45)

Third dose today. 700TT.

It’s about another 25 days since my last dose. I’ve been taking Prednisone 20mg for 10 days now. I want to try to start tapering off slowly again — I don’t like to be on Pred very long. Bad for the body. And my moods. I’d feel more comfortable taking my last dose while I’m still on the Pred, since I need it to combat the side effects.

Right now, I… well, I have Colitis. I am back to being a colitis patient. Slightly better, but it’s there. So I’m back to sitting down a lot, limiting my outtings, urgent bowel movements, and the like. The Prednisone has cut down the amount of blood being past. So I am at the “worse” before-it-gets-better stage.

So I called up AIT and discussed my next dosage and where to go from here. Jasper agreed that I could swig down the final dose this morning, and then we started to discuss diet plans.

For about a week or two, I’ve been reading up on the Paleo Diet. This has been recommended to me by my other fellow worm bloggers. Basically, without getting too much into it, you eat like a caveman.

I love this video explaining it all:

Anyhow, I’m sure this will not be an easy diet to follow, as it cuts out ANYTHING associated with agriculture. My mom would collapse — no meal of hers is prepared without rice or potatoes!

But Jasper was adamant about how important it is for someone like me to stay away from carbohydrates. My poor little intestines just can’t handle digesting them. They get all red and inflamed & stuff. And yet, I am NOT looking forward to the junkie-like withdrawal symptoms I’m about to go through.

So the MAIN rules to follow are:

Small Meals

No Carbs

Fermented Foods

I’ll have to go to the health food store today & see what types of fun food I can find. I have to get more of my unprocessed, organic walnuts — a favorite of mine, and happens to be very well liked on the Paleo Diet. I have tried fermented cabbages, but they are a bit harsh on me. I know my store has, as strange as it sounds, fermented carrots. Those agree with my tummy better. And the more treats that I can just grab without preparing or cooking, the better. I’m lazy when it comes to food.

I also bought myself a few packets of Paleo-friendly jerky and “cereal” products from Steve’s Originals. Again, the more grab-&-go for me, the better. The website has a bunch of runners & rock climbers on it — a stage of physical fitness I am NO WHERE near! But the meats are grain-fed and diet specific, so I suppose I can’t go wrong.

Oh, and a paleo cookbook is on the way, too. I went for the one written by a mommy of 3 boys. Has lots of pictures, too. Everyday Paleo by Sarah Fragoso. Maybe I can entice my dad to help me out with the recipes.

I would love to loose some weight in the process. Prednisone has kept my weight at a steady 150 lbs, and I would rather be somewhere around 135 lbs. Though since I’ve been sick, my interest in “diet plans” are never about loosing weight. Wellness first, always. In fact, when you think about it, that’s the way it should be.

So I’m all prepared. I just hope the motivation sticks. Meal plans are so hard to follow.

 

 

 

 

 

 

 

Prednisone Again… (day 35)

 

I couldn’t stop bleeding. Every bowel movement had about a thimble full of blood. Sometimes just blood. The pain was great, and the stool was very hard, no matter how much I avoided coffee, drank water, and took Colace. And it’s been going on for at least a week.

So this morning, being in a delirious amount of pain, I made the decision to go back on Prednisone 20mg. Surprisingly, I’m already starting to feel better.

And I’m back to the UC urgency. Rushing to the bathroom. I rushed back home in a panic after driving the 5 blocks to drop off my daughter. Oh, and wound up in TWO public bathrooms today that had NO toilet paper (I always carry on me, thank God)! Yeah, so it was a tiring day.

 

Tummy Woes (Day 31)

The honeymoon is over.

The mornings are painful again. And frequent trips in the morning to the bathroom. There was a large amount of blood that started three days ago. Yesterday, there were two or three small clots that passed — something I’ve never had before. It got me very worried. I don’t want anyone to find me passed out on the floor, anemic & worm-infested. I bought some Slow Fe (Iron) — which I would normally avoid because it constipates. And… I’m… waiting it out.

The bleeding is slooooowly subsiding. I think it’s on its way to getting better.

In the meantime, I feel like a colitis patient again. I tried to tidy up around the house, and I felt the familiar “must run to the bathroom every time I bend down” dance. I’m doing the “slow walk as to not upset the tummy” walk when I’m outside. So, I need to clear my schedule this week & rest.

That means rest my tummy, too. So I did a run (hobble) to the store & picked up… baby food. Yeah, that’s right. The easier to digest, the better. So I don’t mind snacking on some Apple Pear Oatmeal cups. May help me to lose the uncomfortable weight I gained from the Prednisone.

Okay, I KNOW weight loss and anorexia is a problem for most people that have Ulcerative Colitis. I still secretly, morbidly envy those people. UC has never helped me loose an inch. In fact, it made me GAIN 20lbs.

Because WHAT do I do when my tummy hurts? I nosh on bread. WHY? Because I’m Italian. And Italian’s believe that if you don’t eat, you’re DYING! So no matter HOW much pain I’m in when I’m chewing that bit of chicken cutlet, at least I can EAT!

So instead of becoming anorexic, I have this protective pouch of fat where it hurts. Like it’ll shield me from anything that could hit it from the outside — while it’s in turmoil on the inside. And I have a way of holding on to it with my hand when I’m walking around. Probably looks like I’m pregnant.

There are still little moments that let me remember that things are not the way they were. That I’m making progress. I know this is all part of the process, and my optimism has not faltered. I guess it’s just time for me to take it easy for awhile.

A Long Weekend (day 29)

It’s been a few days since the second dose, and I’m really feeling it. Again, when I’m good, I’m almost at 100%. But when it’s bad, it’s bad!

About 4 days after the second dose, I started getting that hemorrhoid pain again. Though, it tends to extend a bit farther into the rectum than a regular hemorrhoidal pain. So, I think that it’s actually irritation of the rectum due to the worms. Going to the bathroom is painful, like sandpaper. I try to soak myself in water to ease the pain.

And since I was on vacation this weekend, that meant frequent dips in the pool. I get to have my family fun, and no one is the wiser that it’s part of the “therapy”!

It DID work. But, especially today, there was quite a bit of bleeding. It was so bad today, I started feeling the weak & almost dizzying effects of anemia — something that I’m used to feeling when my Colitis flairs up & the blood count drops. It made traveling a painful and laboring experience. I just wanted to come home and get the proper rest & routine care that my body needs.

So my body is telling me to slow down now. I’m going to get more sleep and take it easy this coming week, and hope it’s enough to get my body to adjust. I’m off the Prednisone now. I wonder if I’ll need to go back on it for the 3rd dose in a month from now, if these are the symptoms I get. I guess it depends on how long these current symptoms last.

For fear of being well.

Around the 7th day after I took my first dose I started to feel moments where I felt “normal” — better than I felt in many years.

After several hours of this, something turned. I started to feel like…. well, like….

Picture this. You’re in a windstorm. You find a tree to grip on to. You have to hold that tree for the duration of the storm. It seems like an eternity. And you can do NOTHING else — your focus is completely on your grip. Everything else in your life is swirling around you, and you’re helpless to do anything, because you’re fending for your very life.

Then suddenly, it’s over. The wind is completely gone. Your arms are sore. The panic is over. But you can plant your feet on the ground again &…

…and what do you do now? You pick up the pieces in a completely different place. Your belongings have been thrown around you, and so much time has passed.

So I had something close to a panic attack. After all this time, I couldn’t remember what it was like to be well. And the excitement I was feeling was beginning to mix with a sense of utter fear. FEAR! Like I was loosing a grip on all I knew. Like I was let out of prison after years of confinement. I called my friend in a fit of bumbling panic… which lasted strong for a few hours.

Those feelings have dwindled for the most part, but I still feel a bit out of place. I was in a sea of fog for 8 years, and just waking up now. I’m not just living to push through my days anymore. I can do as I want, without the limitations that I’m used to dealing with every moment of the day.

So I have to clean up the mess that has formed around me. It’s going to take quite a lot of time. I barely know where to start. But hey…. it’s a start, after all.

And new beginnings take an awful lot of work.

Dose 2! (Day 23)

That’s right! It’s time for the second dose! Started with 300 TT. Second dose is 500 TT.

And I am READY! I’m feeling good. Alert. Happy! No trouble in my belly. No pain in my butt. :p

Still having some bathroom issues. I have only another minute or two notice before urgency. The poop is still not nearly formed or normal. And I still need Senna or Colace to help things move along — even though I’ve increased water & fruits. Like I said, I was constipated when I started all this — uncharacteristic for Ulcerative Colitis. I’m hoping with more whipworm that it starts to regulate this better on its own.

My milestone today? I put away the winter clothes. Without stopping ONCE to go to the bathroom!

You wanna know WHY that gets me excited? Try doing your chores around the house, but stop every 3 minutes to run to the bathroom. Wait there 5 minutes, then pick up where you left off in your chores. Do this a few times, and see how easy it is to pick up where you left off. Guaranteed, you’ll have a hard time remembering your NAME after awhile!

My spirits are really good! I keep smiling to my parents to let them know that I’m well! They worry, of course, and are also hoping for the best. They are also my biggest support to my recovery.