Scope Prep

I've got a pouchoscopy in the morning (scope of my internal J Pouch), so today I am prepping for it. This means fluids all day (full fluids are fine), and then some enemas in the morning. 

Today's meal plan: 

A bit of chocolate for breakfast

A rooibos chai tea latte for lunch

Some broth 🤢 and then ice cream for dinner and dessert. 

🤞🤞🤞🤞

Fingers crossed they'll be able to find where all the blood is coming from! 

Delayed Symptoms

Last night, for whatever reason, I had some pretty intense inflammation pain in my J pouch. It could have been the dollop of hot sauce I put on my food. It may have been the accompaniment to my migraine (which showed up today).
It was bad! I even had to use a numbing agent to help mask the pain enough for me to fall asleep.

My symptoms, though, did not seem to match the level of pain I was feeling.
All through the night there was no blood, no sign of any inflammation apart from the pain.

Then, this afternoon, I was in the washroom. My hubby heard me from the living room:

"Ah. There it is."

A little late to the party.

Pain is a very clear sign that something is amiss. There are times when the wires get crossed in the brain... resulting in the body sending pain signals when there may not be pain. This time, however, I knew that something was going on because of the pain. It just took a while for the other symptoms to show up.

Invisible Flare Ups

Flare ups are not always visible.
With Inflammatory Bowel Disease, pain and flare ups are rarely visible. Even to the sufferer.
The only real signs of flare ups, apart from blood, are subtle. Sometimes it will be some skin infections, other times I will just feel flu-ish first for a few days, or feel really rundown for no apparent reason, and sometimes it comes out of nowhere.

Crohn's or Pouchitis or Ulcerative Colitis flare ups vary, and pain can be experienced in areas that do not seem at all connected. Flank pain, back pain, joint pain, headaches, muscle cramps or spasms, painful gums while brushing teeth, changes in feeling hot or cold, changes in hair, looking more pale, slouching without knowing. These are all in addition to the digestive pain.
The burning, cramping, sharp, pains that increase exponentially during flare ups.
Note that: these pains do not go away, but they can lessen.

I was lucky during this flare up because the blood only lasted for one day.
That does not mean, however, that the flare up is over. (Although even I got excited and thought it may be over when the blood stopped).
Overnight though, I had so much burning pain and muscle cramping that I could not sleep. The flank pain, digestive pain, back pain (all on top of the pain from other illnesses) were enough to prevent me from sleeping.
The worst part of all of it is that there is not much that I can do.

So this morning, I am having a nice cup of peppermint tea with a simple breakfast: one piece of peanut butter and jam toast.
Why did I choose that?
Well, herbal peppermint tea will help to ease the nausea and potentially numb a bit of the pain. It will always help to move some of the food faster through my system. The reason I chose the toast with pb&j is very simple. Peanut butter offers a bit of protein and energy, jam is just delicious and does not usually cause issues, and toast helps to settle my stomach.
If this does not work, then I will likely go down to Boost for a few meals. If that doesn't work then I will have Boost for a few days.

It is not a horrible flare up. It may last a week or so, but it is not concerning me at the level that other flare ups have concerned me. So I am going to eat simpler foods for my personal digestive system that usually help reduce the pain and inflammation, and continue being optimistic about how short this one *should* last.

We Be Flarin'

Over the past few days I have been feeling  excessively drained. Unusually drained.
It is true that I have been wearing myself out more than usual, but the type of drain I have been feeling had me a little concerned.
I got my answer today!
In blood (muahaha).

I am a little relieved because it isn't anything I have not dealt with before.
Relieved is not the term one would expect to feel when seeing blood, but it entirely explains the depth of drain that I have been feeling. It makes more sense.

So I am experiencing a Crohn's flare.
(Actually it is probably more of a Pouchitis flare but I hate calling it that because Chronic Pouchitis sounds like a made-up disease. It's not - it is ulcerative colitis without the colon: inflammation of the J-pouch - but Crohn's flare just makes more sense to most people and it is essentially the same symptoms).

It could be from activity. It could be from the arugula I just bought (which would be a piss off because I actually really love arugula). It could be from getting myself rundown. It could be a different food or trigger of which I do not know.

What I DO know - what I am fairly certain about - is that it is not serious enough to get worried. I have some pain (hello, duh! Your intestines are injured enough to be bleeding!), and I am pretty weak, but I also know that a few days of rest, maybe a full fluid diet for a couple days, and maybe some cortifoam, and I will be back to my usual intestinal pain within a few days.

Blood=relief.

What a strange strange life this patient life is!

Tricks to Deal with IBD as a Bride

Being a Bride often includes an amazing Groom (or Bride), a wonderful group of friends, a jaw-dropping location, and a Wedding Gown.

When choosing a wedding gown, there are many issues to consider. Bathroom breaks are not always on that list of considerations. For many brides, a handful of bathroom breaks does not warrant any say in choosing a wedding gown.
But what if the gown-wearing individual has a 'bathroom disease'??
Being a Bride with Crohn's Disease, Chronic Pouchitis, and just general inflammation throughout the intestines, bathrooms are an essential part of my existence. So, when choosing a wedding gown, bathroom breaks become part of the conversation.
On bad days, really good days, really stressful days, really exciting days, my bathroom breaks will be anywhere between 12 and 25 times throughout the day. So - that's what I need to prepare for.

Here's the problem.
I can also be a bit of a princess.
I wanted the poofy gown. I wanted to feel like a Queen. So I tried to figure out what the best option would be:
• A big enough skirt to fit a massive hoop skirt underneath to be easily lifted over my gown?
• The Bathroom Buddy under-skirt?
• Wearing Depends under my wedding dress (like I did for my Grad dress) just in case I couldn't make it to the washroom?
• A dress that is easy to get in and out of and a dedicated bathroom stall so I could get dressed and undressed every time?

I fell in love with a Mikado Silk gown from a designer I love. I had dreamed of that dress for a few years already. It was an A-Line dress with straps and a low back, buttons, and pockets! 
So I had to come up with a system.
A beautiful friend gifted me a gorgeous kimono at my Bridal Shower that I brought with me throughout the day and at the reception (packed with extra medications, my Epipen, my medical information, some hair pins, flats for dancing; essentially an emergency kit).
Each time I needed to go to the washroom, I brought that emergency kit bag with me. I undid the back of my gown (which was a zipper hidden by buttons), slid off the straps, and put on my kimono. As I stepped out of the gown, I was covered enough (for the women's washroom), I hung the dress on a hook above a locked fire exit door beside the last bathroom stall and went to the washroom. I didn't even need help each time!! Then, when I needed to get back into the gown, I crawled in from underneath with my kimono still on, then replaced each sleeve with the gown's strap one at a time, then got zipped back up (or zipped myself back up).
It was a modest way to make sure that
A ) No one saw anything they did not need to see.
B ) No one else HAD to be there (since I went a dozen times or more throughout the reception).
C ) I didn't have to try and fit a big dress in a little stall.
D ) I did not need to wear Depends.
E ) I did not have to try and lift an entire dress over my head... and then try to freshen up with all of that material still drowning me.

So - ladies with IBD - if you are looking for ways to make the bathroom breaks easier and less conspicuous (instead of having all of your bridesmaids in the stall with you to help), find a dress you can easily step in and out of, bring yourself a lovely kimono to cover up, and take your necessary bathroom breaks in peace and relative comfort.

Long Recuperation

Big events take long recuperation times.
Mistakes take even longer.

These days I am starting to feel more like myself since the wedding weekend. I am still recuperating - energy mostly - but I am getting there. We were able to enjoy Thanksgiving festivities over the weekend without too many tears from pain, which we are thrilled with.
At home, however, things are still slow. We still have not fully unpacked from the wedding and our basement is a total disaster with wedding supplies. We still want to get through all of the photos and post them and we both have lists of things we need to get done, things we need to pick up, but neither of us have the energy. We have been sticking close to home, resting for the most part, and just enjoying being together.

There's an even longer recuperation that is a little tougher to take lightly.
With new Cortisone injection appointments this week and next, it reminds me that one miscommunication/mistake is still wreaking some havoc.
6 months ago I had my first ever SI Joint Cortisone injections. I was informed that I could not be taking certain medications for this injection, and was told I would have to halt this treatment two weeks before the injection and then not begin them again until the second injection another week later. This treatment has been vital in helping to control my IBD.
Within three days being off of my vital medication, I had already lost quite a bit of weight, and my intestines stopped functioning normally**. I began experiencing symptoms (terrifying symptoms) that I had not experienced in years. Suddenly I was carrying extra clothing in my purse, I had to buy Depends, I could not eat much solid food (if any most days), and I even starting having incontinence during the day. Zero control. This is obviously in addition to the pain, cramping, blood, burning acid-like stomach discomfort, vomiting, and just general fatigue and weakness.
By the time the first two weeks were over, I was legitimately fearful of what may happen if it continued much longer. The idea of further surgeries, complications, or recuperation time was frightening. Was it even worth the short-term relief in SI Joint pain?
It took me and my physicians over 12 years and two major abdominal surgeries to get my intestines to the level of control I had. Before these injections.
So I emailed my GI specialist.
Turns out, I did NOT have to stop taking my medication for these injections because of the reason I am taking them. So I was able to go back on my treatment before the second injection.
By that point, there was some damage done.
It has been 6 months and I am still nowhere near the place I had been before stopping that treatment for two weeks.
Two weeks of missed medications and I am still recuperating 6 months later. At the rate things are going, I expect this resurgence of symptoms to slowly improve over another 6-12 months, if I'm lucky. Although the incontinence during the day has mostly improved, overnight issues still require Depends sometimes (although it is never predictable), and only in the last month have I been able to introduce more vegetables without a catastrophic fallout.
Even on our wedding day I had no more than 6 bites of food after 12pm. My intestines just could not handle it. Plus, I really didn't feel like risking urgency while in a puffy white gown that I had to step our of for each bathroom break. (Although I do have to admit that I am pretty proud of the system I had for my bathroom breaks). I'll write another blog about that alone.

Recuperation times are different for everyone, for every situation, for every disease. What is frustrating is when there is a miscommunication that results in looooooong recuperation times. It can be awful some days, and if I think about it too much I feel quite angry about it.

Hopefully it will improve over the next few months. Fingers crossed.

**normal function for me is bathroom breaks 10-15x per day, maybe an accident once a month overnight, but with good control throughout the day.

Back to Boost

The last few days I have been trying to eat solid food.
I had potatoes, some chicken, more potatoes, (a little bacon yesterday), toast, really easy stuff for my body... apart from the bacon.
I was fooling myself.
It wasn't really working.
My intestines were still pissed and punishing me for eating. I would wake up with horrible cramping and pain and lots of mandatory bathroom breaks.

But I need to eat.
I already lost weight when my one medication wasn't working...
Apparently my body has not recuperated enough.

So today I am back to Boost and full fluids  instead of soft foods and starches.
One step backwards.... but my intestines aren't as angry today.
So that's a plus.

Thank goodness I like Boost.
Seriously.

Bad vs Normal Bad

Something happened this week.
I am not sure exactly what triggered it - the spring rolls, being on one of my antibiotics too long, or just a general flare - but something happened that flared things up really badly. REALLY badly.

In hindsight, really the problem was that I stayed on Flagyl for 3 weeks instead of just 2 weeks.
I tried to push it because Doxycyxline is out of the rotation right now because it stopped working, so I give it a break for a few months then try again.
This flare hit me so abruptly that it didn't strike me that all it was was the antibiotics. It hit SO hard and SO fast that I would have sworn something else was at work.

I spent days as sick as I was in 2015 with the haywire thyroid levels.
I was started trying everything. Over two-three days I hit the symptoms with everything at my disposal that was safe to try (and not all at once).
I switched my antibiotics.
Three hours later I was able to get down a piece of toast (and keep it in for longer than 10 minutes).
My energy got better (super slowly).
Yesterday it got even better. I was able to get down two plain crêpes and some orange juice.
Then, all of a sudden, in the middle of the night, I felt 'normal'. Today was going to be a normal bad day, instead of an excessively out-of-the-ordinary bad day. Around 3am I just knew that I was back within my normal range of 'bad'. It is a fine line, but I felt relief when I knew.
So then today I got down some chicken noodle soup and half of a dinner roll, then a piece of toast with avocado and egg with mayo.

That's huge!

I have probably lost 5lbs or more just because of this week (they definitely had to take my dress in a little bit).

From one medication not doing its job. That's it. One pill. One pill a day out of way more than I would like to be taking - if ONE falls out of line I can be completely out of commission. I can be so weak that I cannot even stand up straight for 10 seconds. One wrong dose and I am not strong enough to get dressed by myself.

Luckily we found the issue and I am on a different medication that has me on a better trajectory.
BUT
What do I do if, in two weeks, Flagyl still doesn't work? And what if Doxy still doesn't work either?
It means that I will force myself to live through the hellish part of my disease for a week while I take a break from all of them, so that I can go back on the one I am on now for our wedding. I want to have energy for our wedding day/weekend, so I want to be on the combination of medications that will give me the best chance. If that means having to have a bad week again for that to happen, then I don't really have an option. The only other possibility is Prednisone, and I refuse to open that can of worms until I actually need my life/intestine to be saved.

Well, keep your fingers crossed!

On a majorly positive note, I just found out that the World of Dance tour is coming here!!!!! They are coming here and I found wheelchair accessible seats and Rj is coming with me and we're going to see World of Dance!! Aaaaahhhhh.

Trying Everything

I am not sure what's going on exactly, but my Crohn's is right ticked off.
I have lost more weight, felt incredibly shaky and weak yesterday, and my intestines are punching me from the inside day in and day out.

So, I am trying everything.

I am sticking to full fluids (Boost, maybe some yogurt or apple sauce) for the next few days, especially since something as mild as cheerios had me racing to the washroom shortly after. Boost it is. It won't help the weight loss, but if I can manage to keep something in, maybe I will at least maintain where I am.

I took a Maxalt last night. I was having a mild migraine - one that I usually wouldn't bother to use a Maxalt for - but last time the medication also managed to help my intestinal pain. Perhaps I am experiencing stomach migraines? Either way, I tried it last night - nope.
I took a muscle-relaxant as well. Didn't work.

So today, I will be switching my antibiotics to see if that refresher will help, I will be doing my Methotrexate today (which I am due for anyways), going to stick to Boost, and then do a Cortisone Enema.
Let's hit this thing with whatever I can (without over-medicating) and hope that a few days resting from trying to digest any solid food will give them the break that they need.

On a positive note, I get to have my last (or second to last) dress fitting of my wedding gown tomorrow night. Unfortunately, they may have to take it in.
Here's the problem - I have no idea if this is a problem that will continue over the next few weeks. So I *could* return back to normal by then, or I could lose even more weight. So do I take it in about half of what needs to be taken in (maybe an inch), and then if I lose I won't be completely swimming in it, and if I gain it will be perfectly fitted to my body? Or do I take it in the full 2 inches and then if I continue to lose then it will be closer to the fit I need.... but then try not to gain any weight at all - with a disease I can't control...?

First world problems, I know.
The joys of being a bride with chronic illness.

Effing Cabbage

Working so hard on wedding planning (we are in crunch time now - 29 days), cooking at home has been a little more sparse. We have had to resort to some convenient solutions - and there are lots of healthy-ish options - but last night we just threw some egg rolls into the oven.

Egg rolls nearly always have cabbage in them, so I am cautious eating them, but a few of them don't often cause much of a problem.
Well... turns out these particular ones had quite a bit of cabbage in them.
My Crohn's and Pouchitis both don't respond well to more than a little bit of cabbage.

I ate a few eggs rolls and my intestines said NOPE.

It said NOPE a lot overnight.

20 minutes after eating - NOPE.
Every 30 minutes or so after that - NOPE.
Explosive and urgent trips to the bathroom approximately every 30-60 minutes over night, and about every 1-2 hours since I actually got up for today. Nope nope nope nope nope.

Effing cabbage.

This was not fun. Not expected. Not helpful.

Although now I don't have to worry too much about dropping any weight before the wedding. One night and BAM, a few pounds lost. Effing cabbage.

I've learned my lesson. Rj gets the rest of those!

It's Sssssssscope Time!!

It's that time of year again!
I get to binge on ice cream and pudding and yogurt, I can drink loads of herbal tea and steamed milk.

Then, of course, while going on this full fluid diet, I also have to use a laxative and do a couple of Fleet Enemas, but hey - it's all about the ice cream for me!

Tomorrow is scope day.
It's only a Pouchoscopy (which is really a Sigmoid scope but without the existence of a sigmoid colon... because my large colon is gone). In the place of my large colon is the end of my small intestine that was shaped into a "J", creating what is called a "J-Pouch". That's what they are scoping tomorrow.
The difference between a pouchoscopy or sigmoidoscopy compared to a colonoscopy is that they usually stay within the last area - they don't have to insert it very far up. A regular colonoscopy or an endoscopy (from the top end) usually try to get further in. For those procedures, it is a longer preparation process, including disgusting laxative drinks and several days of fasting instead of just one.

Because it's the smaller of the procedures, I only have to deal with full fluids today, then nothing tomorrow after 9am, and technically one fleet enema in the morning.

Why am I doing two?
I tend to overprepare.
I overprepare about nearly everything.
With these procedures, they are often scheduled months in advance, and they are a big deal. If you are not properly cleaned out, not only can it cause a dangerous situation if there were ever a complication, but they could also cancel or postpone the procedure.
I would rather be a little more squeaky clean than necessary than risk sepsis or a rescheduled procedure - if it is something that I have some control over.

So, full fluids, a gentle laxative, then an enema tonight, followed by a second enema tomorrow.

Hopefully the results will be the same as the past few years -> some inflammation that is relatively stable. Hopefully there won't be too many ulcerations, bleeds, or any abnormal growths. Also, fingers crossed that any biopsies taken will be negative for any cancerous cells.

You know what I DO love about scope day?
1. I get to see my amazing doc who has always been such a supportive physician turned friend.
2. I get about 10 seconds of absolute blissful pain-free moments as they are inserting the sedation.
3. Spending the morning hungry usually means I get to eat whatever I want/crave after the procedure. (Granted, the pain from the procedure usually kills my appetite, but if I happen to feel great, I can indulge).
4. I get quality time with my folks at the hospital.
5. I really do love seeing how my disease is doing right from the inside out.

Wish me luck at my annual scope!

Treatments and Triggers - Timing

Once you have lived with chronic illness, certain things quickly become habits.
Keeping a journal of foods, activities, medications, appointments, treatments - patients are as responsible as doctors for keeping track of their own health.
Because so many diseases are not completely or properly understood, as well as the fact that each patient suffers in their own unique way, these patterns that we find ourselves are vital.

If you start a new medication, it is important to isolate that treatment. If you wind up with improved symptoms, adverse effects, or strange side effects, you want to know which source it is coming from. If you begin two or three medications at the same time, it is more difficult to differentiate between the sources.
The same goes with triggers - if wind or snow is a trigger, you don't necessarily want to add in another suspected trigger at the same time, because if something happens you may not be able to tell which one actually caused the problem.

I made that mistake today.
This morning I felt pretty decent... mostly because I didn't eat anything. I was able to run one errand before needing to come home and rest.
Food is an obvious trigger - especially lately.
Heat and direct sunlight can also be triggers, and have seemed to be so this year already.
When I got home, I was feeling pretty alright, so I decided to eat something. Right after eating, I went outside to spend time with Decker and read a little bit on a chair with my legs out in the sun.
Within five minutes of being outside, I experienced uncomfortable urgency followed by a race to the washroom.

So was it the food?
Was it the heat?
Was it the combination?

What I should have done is waited an hour after eating before going outside to read. If I raced to the washroom two or three times before going outside, it would have been evident that the culprit was the food. If I continued to race to the washroom after only a few moments outside, then perhaps the heat is a significant trigger this year.
As it is, I am *guessing* that it was the food starting the problem and the heat exacerbating it and making it an immediate problem.

Who knows?

This is why it is important to remember to stagger your medications and your triggers - especially if they are new. Then you can know what to avoid and how to manage your time and activities!

Sleepless Night - Again

There is a bright side to experiencing a night without sleep.

There are a few things going on: I have a major j-pouch flare-up, I have been using Cortifoam, and I have had an extremely difficult time eating and getting the nutrition that I require. I also that I cannot absorb the nutrition that my body requires.
Yesterday, the cortifoam had improved my symptoms later on in the day, which made it easier for me to eat. In a way, this is a really great thing. My shakiness and weakness were both improved after having a good meal, and I had more energy from the protein I managed to keep down. With fewer bathroom breaks I am certain that more nutrients absorbed.
This is really important.

Unfortunately, it also means that the food was bound to result in severe stomach pains and intestinal cramping. These pains were not severe enough for emergency treatment or anything, but they did manage to keep me up all night, rocking back and forth on the bed in the guest room as to not keep Rj awake (or make him vomit from motion sickness - the bed was basically a boat while I was rocking for hours on end).
It isn't that I wasn't tired, and it wasn't insomnia, it was simply pain and discomfort that I experienced because I ate a healthy amount of food yesterday.

Kind of a downer.
And yet it also means that the Cortifoam worked well enough to allow me to eat - to get past the immediate pains and urgency and nausea in order to absorb some nutrients.
That makes it worth it.
So the majority of the day today will be spent sleeping... hopefully... and if you see me, don't be alarmed if I have a zombie-like appearance -> in the way I look, move, walk, and even talk.

Hooray for Zombie days!