The Gimpy Colon*

*No, it's not another trendy bar.

The New Guy…

While I applaud my efforts to try and catch up on two and a half years of blog posts, I’ll stop clapping, bring you up to speed and then go forward from there. I’m so ambitious… in my head.

So in November 2013, I had a resection, had a pretty easy time of it, got the morphine pump, left the hospital, ate lots of Vicodin, weaned off of Vicodin, went on Cimzia (which is a whole ‘nother post) and had a blissful two and half years of remission with a few flares sprinkled in there for good measure.

I started eating healthy, I started exercising. I even ran three 5ks and really enjoyed every one. Really, I even ran one on vacation. Then in March 2016, everything went down the crapper. (Pun!) I was inflamed, wiped out, foggy, fevery, and my stomach was KILLING ME  I was moved from my original GI (who I really liked) to a new specialist.   He’s a nice guy and he looks a little like my brother, Paul.  He had me do a few tests, colonoscopy, CT Scan, etc. and put me on 6-MP (which is also called Mercaptopurine for those who speak medical).  I was on that and Cimzia through most of the summer.  I was sort of feeling better and began to eat a few too many salads and ended up in the hospital for three days with a alleged obstruction.  I escaped the hospital without having to have surgery and began a very real fear of raw vegetables. I don’t know if there is a name for fear of vegetables, but there it is.

After the hospital, I lived on a steady diet of mush and garbage….the more highly processed the better, but it didn’t seem to help at all. Still in pain, still foggy, exhausted and afraid of vegetables and did I mention the pain?

So fast forward to two weeks ago. I started a new drug with the 6-MP called Entyvio. It loads just like Remicade, but it takes way less time to infuse it, maybe 30 minutes. I get a loading dose, then two weeks later another dose (that was tonight) and then I get another dose in 4 weeks and then another 8 weeks after that and then every 8 weeks thereafter. So far, I’ve had no major side effects except feeling very strange, like goofy? and I also haven’t had any improvement to write about.

I found an Entyvio support group that has been instrumental in navigating my way through taking Entyvio. It seems that it takes several months for Entyvio to take effect if it even does in the first place. I’m so very grateful for the folks over there. If you are on Entyvio or considering going in on it, I urge you to ask for membership. It’s called Entyvio Warriors and it’s on Facebook.

Until next time!

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The Path to the Semicolon…

***THIS BLOG POST WAS DRAFTED IN NOVEMBER 2013.  I’M GOING TO MAKE AN EFFORT TO MAKE UP FOR THE ALMOST THREE YEARS OF BLOG POSTS WHICH SHOULD BE GREAT NEWS TO MY MOM AND THE THREE OTHER PEOPLE WHO READ MY BLOG.

Whelp… in approximately 37 hours from now (give or take), I’ll be going under the knife for the first time for my Crohn’s disease. I’m told from some of my fellow Crohnies that I’ve had a good run, which is what most people say when you’ve died at the age of 100. But whatever, I’m currently sitting here thinking of things I might want to eat because in 3 hours or so, I won’t be able to eat anything that anyone would consider food until I wake up from surgery sometime on Monday afternoon.

But let’s back up. I did promise to tell you (all three of you including my mom) about my trip to Philadelphia to see the specialist. As promised, Butter (not her real name) accompanied me to my appointment. She is skilled in the ways of Philadelphia traffic and also in the ways of Philly specialists.

I arrived with a huge stack of my stuff from the past three years. Information, tests, results, copies of disgusting pictures of my colon, lists of medications, and stupid food journals which are really funny during a flare….

Breakfast: Rice.
Lunch: Ensure.
Dinner: Rice.

The specialist was a nice guy. We had a lovely opening discussion about heating systems (???). He asked me some questions. I answered them. He wanted to know why I didn’t go on a certain class of drugs (the Mexotrexate and 6-MP, etc.) and I couldn’t remember the answer to that. I found out that the gold standard diagnosis for Celiac has either changed or I was misdiagnosed or I don’t have Celiac and am just gluten intolerant. That was some interesting news.  I actually chose to ignore him because I am gluten free anyway – for the most part – so it really doesn’t matter.  Although after talking with my GI doctor he swears up and down that I have Celiac disease.

He also said that I might want to wait on surgery and try the mexotrexate or something in that class. I wasn’t totally on board with that, just a feeling, and took his information and summary. Butter and I ate at this nice sub place and headed for home. In a bizarre twist, I forgot my pain meds before leaving the house, which meant I was in a world of hurt going home. It was times like those where I just wanted to do the surgery myself. While I was in the car, I called my GI and told him what the specialist told me. He called me back while I was still in the car and told me that the part of my colon that is being removed was in such bad shape, he didn’t think the mexotrexate was going to help anything at all.  I was glad because in a funny way, I was all set for my surgery, I had people taking care of my kid’s soccer practice, Farmboy’s business was looked after, my mom was coming to feed and clothe anyone who was living in the house at the time of surgery.

As of the writing of this post, I’m 7 months out from surgery. I hate to be a big fat spoiler but the patient survives and … well lives to write about it.

To Be Continued….

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The Results, Part Un…

This morning I checked on the results of my upper endoscopy biopsy. It’s all online now, so here it is:

“Your biopsies were negative for celiac sprue and H-pylori. They did show chronic inactive gastritis and focal active duodenitis. Follow up is another upper endoscopy only if you are having problems, please call our office.”

So off I went to google “chronic inactive gastritis” and “focal active duodenitis”. I have no idea what people with diseases did before google. Anyway, I also went on http://www.celiac.com which has all kinds of neat tidbits and a message board where I’m finding that the biopsy results are not the be all end all of this celiac situation. The message board has a lot of people on there who got a negative biopsy result and a positive blood test. It’s all a bit confusing to me, but I am figuring that the people who make blood tests and biopsy tests don’t have a definitive test for Celiac and therefore, you have to take a bunch of tests and kind of put the pieces of the puzzle together. I’m ok with that and actually, given what I’ve read about gluten lately, I’m not sure I really want to go back to my gluten filled life. Gluten seems evil to those who are sensitive to it. Plus, I’ve gone pretty far with the diet. I mean, I’ve already told my priest to give me gluten-free communion wafers!!! It seems like it’s a done deal!

I have yet to receive the results of my blood work which was all fancy and sent off to sunny San Diego for a super special workup… so special… and fancy! I will find out then if I carry the Celiac gene which should just THRILL my brothers and sisters-in-law to no end. Sorry everyone! I might have gimped up your kids!!!

Sorry my results show isn’t very exciting. I was trying to line up more singing and dancing. Be that as it may, chronic inactive gastritis means that my inner parts were inflamed at some point but they aren’t currently. Focal Active duodenitis means that the Crohn’s hit the top part of my small intestine which I guess now means that I have small bowel Crohn’s… which makes me wonder if I should rename the blog. I’ve become attached to “The Gimpy Colon” so I think I might keep it… even if Crohn’s shows up in my tongue… (which it totally could!!!!)

Tomorrow is the Thursday I’ve been looking forward to. A visit with my very nice, very helpful GI Joe or Dr. Joe, except his name isn’t really Joe… I am hoping for results for the blood tests as well as an explanation as to the biopsy. Maybe a little chat as to why I can’t see the Endocrinologist until November. Perhaps he can move that appointment up a tad… like say, to next week.

Until tomorrow!

Cheers!

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The Gluten Observations…

So it’s what… day 5.. and here’s what I’ve learned so far:

1. If you mention to someone that you either have Celiac disease or a gluten allergy or are going gluten-free for any length of time, people will come out of the woodwork with names, addresses and phone numbers of friends and family and even complete strangers they met in the supermarket who have Celiac disease, or a gluten allergy or went gluten-free and they can “hook you up”.

2. There is this whole netherworld of gluten-free people roaming the earth. So far they are nice and fun and helpful and not one of them is sad about being gluten-free.

3. Most mayonnaise, some kinds of chocolate, and some kinds of cheese are gluten-free. Thank you Lord.

4. I had my very first gluten-free communion wafer yesterday. I’m no communion wafer connoisseur, but a gluten-free communion wafer tastes much better with a swig of wine.

5. I can’t say I feel better precisely, but I definitely feel different. Maybe different is better than before. It’s hard to tell.

6. It’s tough to not be disappointed that my new gluten-free diet will not cure my Crohn’s disease no matter how good I am about it.

7. It looks like almost any food with gluten in it can be swapped out for gluten-free, which now makes eating for me a fun sort of puzzle… like gluten Sudoku.

8. My dog doesn’t like bananas.

9. I’m glad the first Celiac Disease book I read was by Elisabeth Hasslebeck (a former Survivor contestant, and she’s on a daytime show as well.) She dumbed down Celiac Disease enough for me to want to conquer the next book which is called “Your First Year with Celiac Disease” which is in a series. I’ve already read “Your First Year with Crohn’s Disease” and I’m wondering if I should just get the whole autoimmune box set.

10. I made a chocolate peanut butter cheesecake this weekend and couldn’t taste it because I couldn’t be sure if there was gluten in it or not. Try that. Bake something and don’t taste it. I could have totally mixed up the sugar and salt or forgot to put something in… it really was a jump out of the plane without a parachute kind of feeling. Luckily, people either ate it and liked it or were very polite and threw it in the garbage in the other room.

I think that’s it… still no test results… but I’m sure there’s more gluten-free fun to come!!!

Cheers!

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The Third Day…

I still don’t have my results yet, but I’ll go ahead and say it.  I’ll be STUNNED if I don’t have some sort of gluten issue.  STUNNED.  

I started out the second day really only eating my bowel rest stuff, and some rice.  Last night, I was starving so I went down to Giant (grocery store) where they have a decent organic and “special food” section and picked up gluten-free pancake mix (a necessity for Saturday and Sunday mornings), a gluten-free pizza (because pizza is my thing), a gluten-free chicken pasta alfredo which as of right now, I’m actually afraid to eat, gluten-free English muffins, (which look NOTHING like real English muffins, not a nook or a cranny to be had) and some gluten-free Oreo-esque cookies.   The cookies were ok.  Thankfully, they are just ok enough to kill a sugar/sweet craving and not good enough to eat a whole bag, say… like real Oreo cookies.  The English muffins were like biscuits and I like biscuits… so it that was win/win.  The pizza.. I think I can do better on the pizza…especially after eating a biscuit/English muffin.  Interesting experiences ahead. 

I have already decided that I’m going to have to get to cooking a lot of this stuff on my own for it is all incredibly expensive.  The package of 4 English muffins (biscuits!!!) were $5.00, and the pizza (personal sized mind you) was $6.50.  Thanks be that I love to cook. 

I received and started reading the packet of information my GI doctor sent to me as well as the two books I ordered from Amazon.  I am about halfway through the first book which goes into detail about gluten and how it KILLS… or rather, how it gets stuck in your wooden spoons and cutting boards and pots and pans and toasters.  I’m waiting for the part where I have to get on my hands and knees with a flashlight and check the crevices in my kitchen floor.  Seriously, gluten is everywhere… it’s in makeup, toothpaste, shampoo, food (obviously), it’s all over the place.  I’m checking under my fingernails right now. 

Tonight was my first gluten-free trip to a restaurant.  I got a list of restaurants that were “GF friendly”, and gave it to Gimpy’s husband who picked this place near the mall called J.B. Dawsons.  When we got there, I did not know the Celiac protocol was to ask for the super special gluten-free menu when they sat us down.  When I asked for the menu, the waitress asked me if I had a gluten allergy and I told her I did (because I guess I do), she put a big red GLUTEN ALLERGY on our ticket.   I liked that. 

I ended up with a chicken bruschetta pasta thing with rice pasta.  First of all, it was good.  Second of all… it was good.  I mean, rice pasta (or whatever they call it in real life) is not bad stuff.  I’m just hoping I can recreate the whole works at home.   The GF menu was such that I could come back a few times and have different stuff.  So we will definitely be back for the goodness that is JB Dawsons.

How do I feel?  Well, I don’t know.  My Crohn’s stuff has been bothering me a lot lately, and I don’t know which is Crohn’s and which is “alleged” Celiac.  I will say that my stomach now for some reason holds a quarter of what I used to be able to put away.  In a way, I kind of feel like I’ve had gastric bypass or something.  I can only hold about a half a cup of rice and a banana with some peanut butter and I’m full… really full.  Then two hours later, I’m hungry again and it’s the same thing over again.  I ate probably a cup of pasta and chicken at JB Dawsons and I’m sitting here three hours later with a half a cup of rice.   Gimpy’s husband was a bit torked off that I only had a bit of banana on the special gluten-free banana, caramel, dessert thingy we got.  It was good but I was full.  See how that is? 

The news on the endocrinologist is hilarious.  I called my GP doctor, they told me they sent the stuff to the endocrinologist and that the endocrine guy would call me.  I decided to call the endocrinologist just to say hi and see how they were all doing with my paperwork.  The receptionist I spoke to had my stuff and told me that they would call me within two weeks to set an appointment for SOMETIME  IN NOVEMBER.  She said it depends on my test results as to how quickly I get in to see the doctor.   That’s nice.  I have an appointment with the GI doctor on Thursday.  I’ll let him know that I’d rather dive head first into a pool full of gluten than be stuck on prednisone until November.    

Until Thursday!

Cheers!

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The First Day…

For some reason, it doesn’t feel at all like the gabillion other times I started a new diet. It might be because the goal is different this time.  I’ve been on the internet researching the gluten free world as much as I could in the past few days since the scope.  I’ve reached out to a mom I met through the my kid’s baseball team whose husband has Celiac Disease.  She, thankfully, remembered me and sent some stellar information.  I’m waiting for a confirmation of diagnosis before I assault her with my questions.   I’m waiting for a packet from my doctor to arrive in the mail all about Celiac.  I ordered two books from Amazon.  One of the books is part of a series.  I already have the book on Crohn’s Disease which dumbed things down just perfectly for me.  So I’m just going to get the one on Celiac Disease too.   I figured that even if I don’t have Celiac disease and this gluten free diet works, then I’ll need the information anyway.   It’s also kind of nice since I was getting a little sick of reading about Crohn’s Disease all the time anyway.

Currently, I’m on what my internet Crohn’s disease friends call “bowel rest”.  Basically, whatever you would feed to a 6 month old, I can have.  So, rice, applesauce, bananas,  gluten-free mush.  It’s an attempt to help the medications do their job since it’s the food that seems to stir things up in the gimpy colon (and maybe I should change the name of the blog and just call myself “gimpy”).

I got my blood drawn for the Celiac screens this morning.  The Gimpy Colon apparently also has gimpy veins.  I just have them take the blood from my hand nowadays.  I don’t even bother rolling up my sleeves.  No word from my GP as to the endocrinologist yet.  I’m told that an appointment with one may take months.. no matter though.. I have my Celiac books to keep me busy.

…had to stop there for a second to grab a delicious and nutritious bottle of Ensure… by golly, it’s just liquid deliciousness… truly… one sip is supreme vitamin MAGIC… and just a touch of chocolate chalk.

Cheers!

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The Goodbye…

My Prometheus Celiac screen and genetic screen for Celiac disease is scheduled for tomorrow morning.  After I take the test I am to go on a gluten-free diet until I get the results.  I’m almost positive that I have celiac.  I don’t really think I need the test.  But you know, definitive answers are always nice.  Although, it would be nice for them to tell me that they screwed up my scope somehow and I won’t have to give up the gluten filled carbs that I love so much.  But I think that’s pure fantasy at this point.

So it dawned on me that tonight is it.  My last adventure with gluten!  It’s time to say good-bye.  Somehow, not being able to have fresh fruits and vegetables and basically any kind of fiber was not as daunting as this seems to be.  In a way, I’m glad to most likely be rid of the evil that is tearing my digestive system apart.  I haven’t really been hungry for months.  I just eat now because I’m supposed to… or because I’m bored…

The question became… What does one have for their “last meal”?    I was going to write “An Ode to Ziti”, my all time favorite meal.   But I see that I can get gluten-free ziti in the organic section of the supermarket.  I might be able to recreate my mom’s fabulous ziti that way.

I looked out my window and I saw the answer… Parma… Parma Pizza and Grill is 300 feet from my house.  Surely, they have gluten there.  So tonight I feast, on stromboli and root beer which also has gluten… then Oreos… with gluten…

Goodbye for now Gluten… and take  your stinkin’ stomach cramps, nausea, fatigue, and BIG FAT CHINS WITH YOU!!!!!

Cheers!

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The Prednisone Mishap…

There’s a little trifecta to my condition(s) going on as well, so I thought I’d share.  I am currently on a drug called prednisone.  Prednisone is a steroid which was originally used to bring my Crohn’s inflammation under control.  I was put on prednisone right after diagnosis which was last November. 

I had/have a love hate relationship with prednisone.  At first, I really liked it.  I felt better.  I had more energy.  I started to get a bit manic.  Did you ever know someone who just had all this energy and was constantly DOING and almost unable to stop?  Like the “how does SHE DO ALL OF THAT” girl?  That could be prednisone.  I was grateful to be on prednisone during the holidays.  All my presents were wrapped with different wrapping paper and matching ribbon and several bows all taped carefully and methodically by the crazy imp girl I had become on prednisone.   I was able to assemble four bedrooms to house my family during the holidays, (I think we were 12 total in the house for several days).. no problem, I was good to go. 

Then one day, maybe three weeks in, I got up and looked in the mirror and noticed that my head was becoming more round.  I noticed that my chin had invited another chin friend to share space with… and my engagement and wedding rings wouldn’t fit anymore.   As the days went on, I noticed that the chin friends were either multiplying or getting bigger.   I had to buy more foundation to cover up the chin friends.  Meanwhile, every night at about 3am I would be awake and I mean wide awake.  I would pick up my Droid and surf the net, read the news, and the at some point around 5am I would drift back to sleep.   No matter though, at 8am, I would be taking another dosage of prednisone and I would be off flying again.  I totally hated the chins though. 

You can’t just stop taking prednisone.  You have to wean yourself off of it under a doctor’s care.   During a follow-up visit in January, my GI doctor decided to put me on another steroid called Entocort.  This steroid would target specific areas in my colon that were inflamed and hopefully take care of the problem.   So that meant that I could wean off the prednisone 5mg per week until  I didn’t take it anymore. 

A few Tuesdays ago, (remember, I don’t do details so well) I stopped the prednisone completely and was eager for the chin friends to pack up all their stuff and go.  The only problem was that I couldn’t stay awake to really care.  I was literally falling asleep at work, and basically taking my lunch breaks in bed and then sleeping right through the alarm.   I also had some cold or allergy symptoms, definitely not anything I would be calling the doctor over but the fatigue was mind-numbing.   I called my GI doctor’s office and they told me to visit my family doctor to confirm that it was a cold and nothing more serious.   So I went to the family doctor and since she’s a rock star doctor, she sent me for blood tests to check my cortisol levels.  I went on a Friday morning for the blood work, and Friday afternoon about 1pm I got a phone call from the doctor saying that my cortisol levels were dangerously low.  My understanding of the whole thing is that my adrenal system crapped out on me since I was taking the prednisone. Once I was off the prednisone, my adrenal system should have picked back up, but it didn’t.  It didn’t even register… lazy a$$ adrenal system….   My doctor called my GI doctor and they decided to put me back on the prednisone at 10mgs per day until we got me to an endocrinologist.   So fine.  Saturday morning, I woke up with cramps in my calves.  Weirdest most annoying pain ever.  But now I was fed up and since it was Saturday and there seems to be an exodus of doctors on Saturdays, I went to the emergency room. 

Now, we have a very nice emergency room.  I’ve never waited more than 20 minutes or so in ours.  I actually like their system so going there isn’t a huge hassle.   This time, I told them what was going on, what the cortisol levels were, where my pain was in the legs and they had no idea what to do with me.  I kind of just wanted reassurance that I wasn’t going to die because of all of this and if I could get that in writing, that would be great. 

I ended up with discharge papers that said “eat more bananas”. 

The following Thursday (this past Thursday), I had my endoscopy and along with the lovely Celiac news, I got instructions from my GI doctor that I HAD to see an endocrinologist because these cortisol levels had to be investigated. 

So let’s review:  Crohn’s disease, probably Celiac disease and now my endocrine system is “special”… oh right… and I picked up a bunch of bananas at Costco the other day…  they were on sale.

Cheers!

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The Intro…

Welcome to the Gimpy Colon!!!

I start this blog as a love note to my friends and family who have been so concerned about me and my health.  I thank you all for the phone calls, the notes, the e-mails and even to some extent, the funny faces you give me when I tell you that your fresh-straight-out-of-the-garden salad might kill me.   I never know how much detail to go into about my situation so I decided that I would start a blog and you can decide for yourself how much you want to know.  

About five months ago, I was diagnosed with Crohn’s Disease.  Crohn’s disease is thought to be an autoimmune disease, in which the body’s immune system attacks the gastrointestinal tract, causing inflammation; it is classified as a type of inflammatory bowel disease.  There’s your quick and dirty Crohn’s Disease 101.  More to come as I go along.

Yesterday, I was preliminarily diagnosed with Celiac Disease.  Celiac Disease is yet another autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward.   I actually didn’t do a heck of a lot of research about Celiac Disease because I was hopped up on goofballs from the scope I had yesterday.   Confirmation of the Celiac Disease will be forthcoming, but dollars to doughnuts, I’ve got Celiac too.

You’ll find out quickly, that I’m not big on medical terminology, I’m not detail oriented at all, and I have the attention span of a flea on crack… but at least you’ll know that I’m alive and feeling well enough to type up a blog post.  If you have questions, I’ll do my best to answer them, but I’m not that Dr. Oz guy… despite what you may have heard.

So there it is… as I move along, I’ll tell you about the buckets of medications I have to take, the incredibly bizarre diet I have to follow, and the surprisingly delicious turkey box they give you at the hospital that makes it all worthwhile. 

Cheers!

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