It’s Been A While!

Oh, where to begin…

mr-stomas-behind-20170214

2016 was…problematic.

It started off with more blockages.  Boo!  But this time it wasn’t related to hernias.  Turns out I had developed antibodies to Humira and my Crohn’s was kicking my ass and had narrowed a section of my small intestine.  We switched up meds and crossed our fingers hoping that I would heal up.  But another blockage ER visit and we realized that the narrowing was not going away.

So, it was back to the hospital for more surgery in June.  The doc removed 30cm of small intestine (at least it was the bit at the end).

My human said I looked like a Blobfish after the surgery.

blobfish

Not a photo of Mr Stoma.  This is Bob the Blobfish.  Say “hi” Bob!

Everything looked good.  Healing was going well, and then we ended up with an abdominal abscess.  The abscess sent us back to the hospital two more times during the course of the summer (I told you it was a “fun” year).

Part of the abscess also drained right by me and then healed weird.  It caused me to sit at a weird angle and crap into a skin crevice.  No one was happy about this arrangement.

So, it was time for another minor surgery for a Mr. Stoma facelift!  After my corrective surgery, I was no longer crapping into a skin crevice and the pouching situation was much better.

The abscess healed up for a while but then returned around September.  We’re actually still dealing with this although it is very minor at this point.  It’s basically just a random tube that doesn’t connect to anything – just drains random goo.  Mmmmm…

The week before Christmas, we ended up back in the hospital again (we seriously lost count of how many times we went to the hospital in 2016).  This time there was an abdominal infection going on so it was IV antibiotics and pain meds.  Luckily we were released in time to visit family for the holidays (even if we resembled a blob on the sofa).

kidney-stone-20170214I almost forgot, my human also had a kidney stone in the spring.  Because there wasn’t quite enough going on and we needed another ER trip.

 

So, we’re on new meds which seem to be keeping my Crohn’s Disease under control (knock on wood).

We’re also set to follow up with doctors to get as many health issues under control (was diagnosed with sleep apnea in 2016 too).  Meeting up with a nutritionist next month who specializes with folks with IBD.

So, hopefully 2017 will be the year of feeling better!  Because I have better things to do than sitting around in a hospital bed.  🙂

 

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Holy Bloated Bags, Batman!!!

06-29-15. Shitastrophe

This morning there was nearly a ‘shit’astrophe.

My dear human turned off her 2am alarm in her sleep.  Which she should never, ever do again when she eats Mexican food for a late dinner.

Luckily, our subconscious kicked in around 4am and poked her brain and said she might want to wake up and check the pouch.

So, CC went from a groggy, half-awake state to…”OMG, it’s gonna blow!!!”  In fact, I don’t think I’ve ever seen her move so quickly – or as quickly as a sleep-addled, pudgy woman who has a ready-to-explode bag of feces glued to her can move, I suppose.

I’m not sure either of us have experienced a pouch quite so full and pressurized.  We did make it to the restroom before there was a scene but a pouch change was required because we could tell the seal was already going.

But, if it had gone much longer, there would have been an incident of profound disgustingness.  Because nothing says “sexy” quite like hosing yourself and your husband down with poo in the wee hours of the morning.

We’re just glad our subconscious was paying attention this morning!

brain

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Blockages & Hernias, Oh My!

04-20-15. Medical DramaSo, a couple weeks ago we ended up with ANOTHER blockage which sent us to the ER and another 4 day hospital stay.  Needless to say, we were unamused.

After the blockage in January, they told us the CT scan showed some small hernias and to follow up with our GI surgeon, which we dutifully did.  We discussed it and determined since we couldn’t feel them, they weren’t giving us issues and the blockages didn’t happen at the hernia sites we would just “wait and see”.

Well, we didn’t have to wait long as I ended up with another blockage in late March.  Which my doc said, “OK, waiting over, we should do the hernia repair surgery since that is probably contributing to the blockage issues” (again, this blockage didn’t happen at the hernia).

So, we gave our body a week to recover from the blockage and then we were back to the hospital for the hernia repairs.  There was one near me (parastomal hernia) and two small ones in the belly button area (umbilical hernia).  The initial plan had actually been to go into the opening where I normally hang out (at the stoma – not making new incisions through muscle) to do the repairs but in the end, that ended up not being a viable option so they opened CC back up along the original incision line and sutured up the small herniated areas (they were too small to really use mesh).

So, we got out of hospital on Thursday and have been resting since.  Today is the first day CC decided to go off the narcotic meds.  It’s not quite as fun without the narcotics.

But, it certainly is bearable and so it’s probably  back to work tomorrow.

So much for a wish for a non-exciting medical year!

CC in the hospital with Mr. Moo (he came along for moral support)

CC in the hospital with Mr. Moo (he came along for moral support)

 

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BEWARE: Spaghetti Squash

01-23-15. Spaghetti SquashSo, this has been an “exciting” week for CC and I.  Last week she ate some spaghetti squash.  Apparently, too much spaghetti squash.  Which caused a visit to the ER for pain meds (thank you Mr. Morphine) and a CT scan which confirmed a blockage.

We tried to get into UNC hospital where we had our surgery in 2012, but after 24 hours in the local ER there was no luck getting a bed so I ended up being trucked off to another of the area hospitals.  While in the ER CC was fitted with an NG tube.

Now, CC remembered very clearly having the NG tube back in 2012 and did not enjoy it then.  They came at her with the tube this time and there was a bit of a freak out.  We had to have a nice dose of anti-anxiety meds before they were able to get the tube in.

CC looks so amused to have this tube.

CC looks so amused to have this tube.

There is nothing quite like having your gastic fluids sucked out of one’s body by tube via the nostril.

If you haven’t had to have this, be glad.

Now, it was necessary.  It eased the pressure on the system to allow the blockage to pass without having to have any surgery (yay!).  Since surgery does suck more than an NG tube.  Slightly.

After about 4 days in the hospital (there were some issues with fevers and additional pain) we finally were released.

We also discovered with the CT Scan that CC has a few hernias that need to be dealt with.  They didn’t cause this issue but need to be addressed sooner rather than later.  So, it is back to the surgeon to schedule that but hopefully that will be relatively minor compared to the other abdominal surgery.

So, Spaghetti Squash gets moved to the “Do Not Eat” list along with things like popcorn.

Fun times!

 

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Peas: The Ostomate’s Bubblewrap

Pea Squish. 2014-11-21

Green Peas are the ostomate’s bubble wrap!

It’s totally disgusting but you just cannot help yourself.  You have to pop the peas in the pouch!

CC’s husband-creature tells her she is totally weird for doing this (it might also be the maniacal laughter that accompanies the popping sessions).

He also tells her that she needs to chew her food better.  While we are not disagreeing with that statement you must understand that peas have a superpower…

Peas can confound even the most keen chewer.

Peas are masters of evading mastication!

They can weave and avoid teeth like the #1 pick on your elementary school dodge ball team.

Which means that peas are bound to travel whole down the world’s most unpleasant and disgusting Slip & Slide.

Pea Hug. 2014-11-21

Popping out whole and (mostly) unmolested on the other side.

So, this leads to the peas in the pouch issue.

It really is kind of like popping bubble-wrap.  I think it is a mental pleasure to then destroy the food that your body had decided to not take the time to digest.

So, take that Peas!  You may avoid molar munching but you will not avoid the pouch popping!

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Crohn’s & Colitis Patient Education Day

10-11-2014. CCFA Education Day

This morning we attended the Crohn’s & Colitis Foundation of America (CCFA) Patient Education Day at the University of NC – Chapel Hill.

Lots of fantastic information was presented by the UNC Center for Inflammatory Bowel Diseases including information about vaccinations (particularly if you are on immunomodulators or anti-TNF agents), gut bacteria, genetics, nutrition, research and therapies.

It was really a great session about how different aspects: environmental, genetic, microbiome and immune system all interplay in the disease and how looking at the different aspects can lead to new treatments and (hopefully) a cure/permanent remission and prevention.  Which is all extremely awesome!

If you are somewhere near where the CCFA does any of their presentations (you can check out their website for local chapter events), it can give you some great info.  They also sponsor some great webcasts, too!

Education and Knowledge about the disease is an excellent thing to help  you better manage your disease, symptoms and treatment options available to you!

So, go out my friends and LEARN!!!

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We need a new hobby

09-16-14. Need a Hobby

CC’s husband declared the other day that we need a new hobby.  The getting random sickness that baffles the doctors is getting a bit old.

For the past couple weeks, CC has been really sick with ulcerations in her lower esophagus.  She thought ulcers in the colon was bad – ulcers in the esophagus really, REALLY suck.  Basically we couldn’t eat or drink due to the pain.  There was an ER visit (where they confirmed CC wasn’t having a heart attack due to the chest pains and then sent her home after a bit of IV fluid).  Her gastroenterologist did an endoscopy and realized that her esophagus looked like a mine field because it was pitted with ulcers (no wonder it freakin’ hurt).

On the plus side, things are beginning to heal.  The pain is diminished a lot and we can now eat and drink with little to no pain.  Yay!

As far as we can tell, this is Crohn’s related because there is no evidence of bacterial or viral infections and is showing signs of inflammation.  On a bummer note, we have apparently built up antibodies to Remicade.  Which sucks, because there are only so many meds left that we haven’t tried.

This episode left most of my docs scratching their heads because normally you don’t get this sort of ulceration that acute that quickly but mine came up within a matter of days.  My doc said he had never seen anything like it and has been consulting with other GI/IBD specialists.

So, we’re glad to be starting to feel a bit better but we’d really like to know what brought this on and to try to never have it again because it really was terrible.

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Remicade Tea

08-05-14. Remicade Tea

Today is infusion day and it is also CC’s birthday!  So Happy Birthday to my human!

Some folks were surprised for scheduling an infusion on her birthday, but she said it was OK because she got out of work for a few hours and got to take a nap during the day.

And birthday naps are Awesome!

Quote of the Day from the nice lady who was getting her remicade at the same time:

“Thank you for joining us at the Remicade bar!”

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Looking at the 2-Piece Sensura Mio

07-29-2014. Two-Piece

 

CC tells me that the above illustration is not the kind of 2-piece we are talking about.

Recently, we were sent samples of the new Coloplast SenSura® Mio pouch.  We decided to try some samples in the two-piece variety since we have never actually tried using a 2-piece system.

Here are some of our thoughts:

  • Two-piece vs one-piece system: we came to the conclusion we prefer the one-piece.  I think if you tended to need to change just the bag, or to change into different sizes of bags without changing the adhesive flange that the 2-piece would be great.  But generally speaking, for us if the pouch needs to be changed, it’s due to a seal issue.  We found the joining area to be just a bit bulkier to accommodate the joining area.  It wasn’t bad, but after a couple weeks of that and going back to a one-piece it was nicer to have the lower profile.
  • The SenSura® Mio pouch itself was great!  If you haven’t tried the product yet, contact Coloplast or your medical supply company for a sample (also their BodyCheck site is great for finding products that work well with your body/stoma type).
    • The fabric on this pouch is really nice.  It feels much smoother.  It dries SO much faster than the regular fabric.
    • If you get the front fabric covering, it comes with a little “peek-a-boo” slit so you can say “hi” to your human if you need – but it’s kind of nice and cozy in there.
    • The seal was really nice.  It is much harder to tell where skin ends and seal begins (at least much more so than with other seals.  And I only used it for a couple weeks and I did not have any skin issues like I have had with some other adhesives.
    • I was a bit hesitant about the “full-circle filter” but that actually worked OK.  I was worried about it keeping stuff from moving down into the bag but that wasn’t a problem.
    • Also, if you get the one with the fabric front, it has a cool second Velcro piece up higher so if you need a shorter bag for a little while, you can fold it up and attach there which was really nifty.
  • The one down side for this product for me was it currently does not come in a convex bag style.  For our body type, this is really the type of bag that works best.  We normally also wear the Brava Moldable Ostomy rings and there was some leakage under that but did not leak under the Mio bag seal (good for the Mio bag seal but not as good for me).

So, to conclude, we’re going to stick with a one-piece and at the moment stick with our normal Coloplast pouch; however, we will be watching closely if Coloplast comes out with a convex style of this pouch because if they do, we’re probably switching.

Thank you to Coloplast for the samples!  You folks rock!

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