I thought it was only me

One of the reasons CC is open about dealing with Crohn’s Disease and having an ostomy is the possibility of helping others deal with their illnesses or to at least let them know that they aren’t alone in dealing with this stuff.

Mr. Stoma_Only MeI don’t know how many times on social media groups, folks will share things and you get a ton of comments that say, “Yes! I thought it was only me who dealt with this!”  This is the reason I think we need to share and support each other more.  Sometimes we get isolated (literally and/or figuratively) with our symptoms and don’t realize that some things we deal with aren’t because we’re weak or lazy but part of the diseases we fight.

Most recent example that sparked this post was a meme about being worn out and feeling ill just after taking a shower.  I remember a time when taking a shower was no big deal.  That doesn’t take much energy or work, right?  Fast forward to living with a chronic illness and you realize how much work your body has to do to take a shower.  I’ve had times when I have to have a chair in there; I’ve almost thrown up or passed out just trying to clean my body and certainly have had to lie down and catch my breath/rest after a shower (even on better days I usually have to rest after showering).  And the comments to this meme were basically: OMG! I thought I was the only one!  Seriously, comment after comment of “Wait, this happens to other people too?!”

I’ve dealt with the feelings of frustration/anger because I think I must just be lazy because I just can’t get up and do the dishes or fold a load of laundry.  I always have to make myself take a step back and realize that most likely, I’m not being lazy.  Because I know the days when I do feel better and don’t deal with a lot of fatigue, I get shit done.  I’m doing the dishes and the laundry.  I’m going out and socializing.  I’m working on projects.  So, if I’m laying on the sofa without the energy to take the trash out I self-evaluate.  Am I procrastinating/just don’t want to do it OR do I seriously not have the energy to do this?  Usually it’s the latter.

Dealing with this sort of frustration is probably the hardest to deal with I think because it’s your brain trying to sabotage you into thinking that you just suck and not that you’re just sick or dealing with your condition(s) which often have a wide variety of symptoms.

But, what this long, rambling post is getting at is to share your stories and experiences with others.  Friends & family – and if they’re not supportive, find a group that is.  Whether that group is online or in person.  Because if we don’t share our stories about what we deal with we end up thinking that we’re the only one dealing with crazy shit – but the vast majority of the time, we’re not the only one.

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What the hell is Hidradenitis suppurativa?

So, back in 2014 I did a post about boils.  And how they suck.  And it was part of the 10 plagues of Crohn’s plan and I would start sneezing locusts next.

Thankfully, no one has started sneezing locusts.  But the boils have persisted (on and off) since then.  Which really is a pain.  Literally.

Earlier this year CC went to her specialist at UNC and the doc asked if anything else (other than normal Crohn’s stuff) was going on and happened to mention the underarm boils.  She took a look at it and said, “Oh, that’s Hidradenitis suppurativa!”  While it’s not directly tied to Crohn’s Disease, it isn’t unusual for those with inflammatory bowel diseases to have this.

Mr. Stoma vs H. suppurativa

So what is Hidradenitis suppurativa (HS)?

“Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. They typically develop where the skin rubs together, such as the armpits, the groin, between the buttocks and under the breasts. The lumps may break open and smell or cause tunnels under the skin…. Hidradenitis suppurativa develops when hair follicles become blocked and inflamed. No one knows exactly why this blockage occurs. Factors that may play a role include hormones, metabolic syndrome, genetics, an irregular immune system response, smoking and excess weight.  Hidradentitis suppurativa is not caused by an infection and can’t be transmitted sexually. It’s not contagious and is not due to poor hygiene…. There is no cure for hidradenitis suppurativa. But early and long-term treatment may help control pain, promote wound healing, keep new lumps from forming and prevent complications.”

Info from the Mayo Clinic website

Fun times.

On the plus side, at least I know now what is going on and I got a referral to a dermatologist who specializes in HS and has dealt with a lot of Crohn’s patients who have this condition.

Since I’ve been dealing with this condition for as long as I have and I haven’t been responding well to antibiotic treatment for it and my armpits have become tunneled like Swiss cheese from this (FYI – if you do a web search for this condition it usually comes with photos, and it’s not a pretty condition) the suggested treatment is surgical.

Because apparently I have to have an annual surgical appointment.  *eyeroll*

Luckily, compared to most other surgeries I’ve had this is really minor.  No general anesthesia.  Just local and it’s performed in the dermatologist office.  But, basically CC is going to have her armpits sliced open and left open to heal to help the under-skin tunnels heal from the inside out.  Yuck.  Followed up with laser treatments in the armpits to remove the hair follicles to hopefully avoid this happening in the future (although there isn’t a “cure” for HS).

So, while not exciting (and definitely not pretty), at least there is a plan for dealing with this because we’re kinda tired of dealing with it.

But, at least this treatment comes with the added bonus of no more underarm shaving after the laser treatments!  Silver lining and all.

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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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