"Happiness if found not only in peace but in strife."
Friday's quote from the Keep Calm and Carry On Calendar, funny after my post on Thursday
Over the weekend, the hubs and I had yet another conversation relating to the catheter chronicles, read the first one here.
Again, it was serious but totally funny and had to do with emergency preparedness. I have been thinking lately that I need to buy a stockpile of the type of catheters I like, just in case say they don't make them anymore, or they go out of stock online and I can't find them anywhere else. Remember us k-pouchers aren't all that common, and who knows how things will be in 20-50 years for our access to supplies.
I brought this up to hubs and he of course agreed. His concern was more in terms of natural disasters and lack of access. We again talked about all the other supplies I use are nice to haves, but the catheter is a need to have and of course the hardest to find (again in an emergency I would use a straw or tube found anywhere, but that comes with risks and would only be done in dire need.)
After a bit of discussion, the hubs said, "Well for us it's food, water and catheter - the necessities of our emergency kit!"
And of course I laughed. I will be buying a stockpile soon:)
And while we are on the subject of my k-pouch, I had my scope (k-pouch and upper endoscopy) this morning. I was happy it was finally here, it's been a very rough few weeks. I just kept praying that we would see something (again, a spoonie's wishes are warped, because we know something is wrong so many times, but our bodies bluff to the doctors.) I had dreams all last night that there was nothing to be found.
I was on liquids after noon yesterday, which usually would just tick me off, but unfortunately I have a barely existent appetite right now so it was easy, nice perk. My sweet caretaker man (hubs) took the day off to take me (no driving for me after all the glorious drugs they give you.) We got there right at 7 a.m. and actually started ten minutes before the 8 a.m. appt, yeah.
This was my GI's first time scoping a k-pouch, it was teaching day for me, yeah. I actually do like educating people on my anatomy. Now of course she had called my surgeon to go over the basics. We all decided that I would be awake for this part and actually insert the scope myself, the same size as my catheter so I'm really the pro and knowing my own valve. All went in well and we were off. Right away, we could see ulcerations (they had three screens up to watch, AWESOME!!) I asked what that meant and she said they looked like IBD type ulcerations (Crohn's or UC), she also said the lining of my pouch was sensitive and bleeding a bit, probably inflammation. She tried to get past one point, where she and I both believe I have a narrowing where the small intestine connects to the pouch due to inflammation and scar tissue, but couldn't and so she stopped. At this point the pressure from the air they have to blow in and water they spray in, was getting a little tough to take. She was great about backing down, but there had to be some in there, so I started getting some IV pain meds. She took some biopsies and was just about done in there, and that's where I went to lalala land for the rest of the procedure.
The upper EGD, went much smoother, all looked clear from the throat, through the stomach and to the top of the small intestine. They did take some biopsies from the small intestine at this location to confirm that I do NOT have celiacs disease (the blood test done a few weeks ago came back negative. Which was relieving but not surprising as I don't believe this is my issue, but always good to be sure. Plus people with celiacs tend to have blood loss issues, hmm.)
So what didn't get scoped, most of the small intestine -- she could only go so far with the upper and couldn't get past the narrowing in my pouch to check the bottom.
Are you all still with me? We didn't talk a lot about overall implications of the ulcerations, for now we are going to just try and treat to get me feeling better. So here's the plan:
- I will take Rowasa enemas, through my pouch of course, which are a steroid enema that should help with inflammation.
- We wait for the biopsy results, which won't be until the first week in January due to holidays. If she feels that the ulcerations might be above the pouch too, or if the Rowasa don't work, we will move on to Entocort a steroid.
- Both of these drugs are used to treat Crohn's and UC and I have used both in my day.
- I'm going to get another iron infusion or two in the next few weeks, because I can already tell a difference in energy not having one this last week. During my infusions, I've also asked for a bag of fluids to help with my dehydration and so that will be added to the pack.
- I have my pelvic MRI this Wednesday evening, to check for the fistula issues. All is still status quo there so we need to figure that problem out.
- I have my follow up with my GI on Tuesday, January 10 and from there we will talk about what this all means for the future, continue to discuss my ferratin issues and if they are GI related or do I need to go to yet another specialist for this
I'm in a bit of a confused mental state, which is complicated by my still groggy state from my propophol this morning (yes that now infamous drug.) I'm happy they saw what I knew in my heart was in there. I have really been feeling like I'm in a flare lately, of what I wasn't quite sure since we just don't know what my IBD status is. I just want to feel better, these last few weeks, month, have been very rough.
This may be the road to really figuring out this status and may mean I will officially have to accept the Crohn's/Indeterminate Colitis diagnosis, with actual drug treatments. But at the same time, I'm just so glad to have my pouch, I love it and am thankful for it and if I do have Crohn's, whether I had a traditional ileostomy or not, I will still most likely be on meds so it's not the pouch's fault.
Now it's time to focus on these meds, hope they provide some relief, get through and enjoy the holidays over the next few weeks. In the New Year, hopefully feeling better, we'll tackle whatever we must and keep on chugging, just like always.
"If we live inside a bad joke, it is up to us to learn, at best and worst, to tell it well."
-- Jonathan Raban, English Travel Writer
quote from my Keep Calm and Carry On desk calendar