Philip’s story: My ostomy became my blessing | The Stolen Colon | Crohn’s ileostomy IBD

Philip’s story: My ostomy became my blessing | The Stolen Colon | Crohn’s ileostomy IBD.

 

I hope someday I can feel this way.  Not there yet, but it’s good to hear from those that do get there.

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High Hopes

New plan.  Post before reading.  I get so into reading what everyone else is writing and then I can’t find the words to post about my own stuff.  So here’s the dealio:  As I mentioned before, I’ve been sort of overwhelmed with some things.  My parents were here a couple of weekends ago, which was great- they came specifically to help me clean up and organize my apartment (Trust me, I needed outside help!).  But I was so sick the whole time.  I didn’t want to eat, I didn’t want to do anything, I couldn’t sleep, and dang it, throwing stuff away is HARD for me.  It was work, just sitting there watching my mom go through stuff asking me if I was keeping this or getting rid of that.  So I was exhausted after they left.  Slept for like 24 hours after that.  (But my apartment looks much better now, less depressing, so thanks mom!)

Anyway, I’ve just been getting sicker and sicker.  Feeling crappy more often than not.  No appetite, losing weight, not sleeping, more pain.  I finally heard back from my surgeon who had taken my biopsy slides and history to a “conference” she has with other IBD specialists in the area.  They all pretty much agreed that I had chronic pouchitis and it wasn’t going away.  I could keep trying to treat it medicinally, but she (and they) felt like it was really only worth it if I needed that peace of mind of feeling like i had exhausted every single option.  They all felt that it would probably end the same way- needing to have the pouch removed and having a permanent illeostomy.

I had already decided after the miserable weekend with my folks, I was having surgery of some sort.  I am just too exhausted to keep going like this and to not be able to enjoy spending time with loved ones.  We moved to this town a year ago and I literally don’t know anyone here because I rarely leave the house.  No friends.  No family.  Just the hubster- who is wonderful and all, but ya know we need more than that.  So I’d been doing the research.  I spent a lot of time over at jpouch.org and I did a lot of research on k-pouches and the BCIR.  These are basically similar in that they still use an internal pouch like I have with my j-pouch, but instead of wearing an ostomy bag, you plug a catheter into it to empty a few times a day.  But no outside appliance to wear.  So it sounds pretty good.  But I can still get pouchitis with it and likely would since I’ve had it already.  The pouchitis might cause symptoms like cramping, stomach pain, and fatigue but I wouldn’t have to worry about urgency and continence anymore.  The other drawback is that there are only a few places that do k-pouches or BCIR.  And if I have a problem then I have to fly to wherever I had the surgery done intially to get it fixed.  So it could end up being costly and still not resolve some of my main issues, namely the fatigue.

So I had a lot of decision making to do there.  But I’ve decided the traditional illeostomy has the best chance to make me feel better so that’s what I’m doing.  (It’s possible I may be able to try a k-pouch later down the road, but that depends on different things.)  So Nov 7 I am having the surgery done.  When I come out of it, I’ll have a hole in my stomach with my gut sticking out and what they call a “barbie butt”.  Yeah.  They’re gonna totally sew up my back end.  Which, I think right now, is bothering me more than anything.  And it’s really hard to put words to it, but I think that when you’ve survived bodily trauma, you become extra protective of your physical identity.  And now, once again, I feel like life is just laughing at me right in the face.  Growing up LDS, you’re told “your body is a temple; that’s why you don’t get tattoos and piercings, etc”  But I feel like “God/life/chance/universe/whatever” has done more damage to my body than anything I have ever chosen to do.  At least when I get a tattoo or pierce my nose, or color my hair blue and green, it’s my choice and it comes from a place of honoring my body and the person who lives in it.

*sigh* I’m delving into a new topic there… anyway, bottom line.  Big life changes goin’ on, and I HATE CHANGE.  Do NOT WANT.  But such is life… mine anyway.

=-=-= For the record, I do know that some people out there have it far worse or have had similar experiences.  It’s not the end of the world for me.  It’s just tough going through and I need to talk about it somewhere!

I’m going to add this video.  The song has been in my head all day… it makes me grieve for lost innocence and lost dreams… and… just makes me feel so many things.

Stupid semi-colon anyway…

Frustrating day!  My husband was off work today.  (BTW, I finally decided how to refer to him on this blog- he will now be known as Smikel, which has a fairly uninteresting story behind it, but it works for the purpose of this blog, yay!)  So anyway, we had big plans to work on the house.  And it needs it because I take care of my house like I take care of my issues.  (Press IGNORE.)  But I slept all day instead.  He played Diablo 3.  Which is ok because he needs a break sometimes too, but it’s hard not to feel a tad guilty at the end of the day.

So then I finally got around to checking my voicemail.  A message from my Colo-rectal Surgeon.  Wait.  I need to back up.  I’ve written some of the history in previous blog entries, but long story short- I have Inflammatory Bowel Disease.  I had a series of surgeries starting 2 years ago to remove my colon and create what’s called a J-pouch.  I’ve done ok, but have not been able to return to work, start a family, or generally get out of the house very comfortably most of the time.  I’m on a lot of medications just to get the functionality I have, but it’s still not letting me get back to a semi-normalish life.  So I’ve been pushing my docs for that.  My GI doc says that I should be doing better, so 2 weeks ago I had a scope of my pouch.  We both expected it to show tons of inflammation and problems, but it actually looks pretty good.  Best it’s ever looked.  So he said that it might just be the way my pouch is, but he didn’t see any pouchitis- which is basically inflammation of the pouch.  He’d taken some biopsies and said we’d go from there when we got the results.

He called me last week and said the biopsies are showing some pouchitis.  I’m already taking the meds they would treat that with (Humira, Buedesonide, and Flagyl/Vancomycin/other antibiotic) so he said we could try switching from Humira to Cimzia or it might not hurt to check in with my CRS to get a surgical opinion.  So I called her office, and she was actually able to get me in right away.  (BTW it’s a 4 hour trip one direction to see my GI and 4 hours in another direction to see my CRS.)  She initially didn’t think she could help surgically unless I was ready to opt for an ostomy.  She said that any biopsy of a pouch would show pouchitis, so she didn’t feel that was really a concern.  Then she did the good ol’ “finger-check” of my pouch and decided that I still had a lot of rectal cuff left.  They used to take these out completely and hand-sew the j-pouch, but now the standard practice is to leave a few centimeters of cuff and staple it.  For some people this means they can still have Ulcerative Colitis in the remaining tissue.  So she said it was possible that doing a “pouch-advancement” – going in surgically to remove that last bit, then hand-sew- might be helpful.  She warned me that it is a difficult surgery and recovery.  And from what I’ve researched on it- yeah, looks painful.  But I was ready to commit to it if it might help.  It is possible that this surgery can cause problems with incontinence, but I figure if I’m only steps away from an ostomy at this point, there is little to lose anyway.

So I’ve been feeling pretty optimistic about this surgery for a few days now.  We had it scheduled for Nov.  TODAY she calls me and the message is that she talked with my GI doc who feels the problem is with my pouch and pouchitis and so they’re not sure the surgery is going to help.  To be clear, I feel like my doctors have generally been pretty great.  And I actually appreciate that my CRS felt like she wanted chat with my GI before fully committing to the surgery.  My frustration is in being told- “Nope.  No pouchitis.”  “Well, maybe a little pouchitis.”  “Pouchitis is the whole problem!”

So now, I am frustrated and confused, have no idea which direction I should be looking to get healthy.  And it takes these guys so damn long to do anything.  Appointments are always scheduled “in a month”, etc. etc.  And I just feel this clock ticking away.  I’ve already decided pregnancy is probably not the best option for me.  I’m 37 years old and at this point, whatever health I can regain I don’t want to do anything to throw off the balance.  So we plan to adopt.  But I don’t want to be too old and tired to take care of the poor kid!  And most days anymore I just feel like I’m failing on all fronts- my husband, Smikel 🙂  is super supportive, but I rarely feel like I’m able to offer that back.  I spend like 75% of my time in bed (or the bathroom) and I’d like to be able to look forward to something else, ya know?

So now I wait, again, to hear back from my doctors.  alkdfjksafjkajhgoaitg;oawieojrakjdnf

 

On the bright side, I had 3 new videos to watch from www.Markwatches.net– which, if you’re a TV fan, you should check out.  It’s the best ever and made my night!  (also www.Markreads.net.)  I don’t have a link to any of his markwatches videos, but you should check him out (FYI you can find free downloads of the videos at http://markspoils.blogspot.com/2014/06/the-black-market.html.  Anyway, his site is pretty much my bright spot every week so I have hopefully shared some joy with some of you!  Better to end with this than talking about butts, I suppose… G’nite y’all.

 

 

The Moment to Fight (IBD part 3)

So I’m hoping I can get to the present time with the rest of my IBD story in this post.  After the 2nd surgery, I had a really rough time.  I felt sick and weak all the time, like I was going to pass out at any moment.  I also found that the more exhausted I got I would start throwing up or dry heaving.  Even taking a shower was difficult.  After about a month, I found I had an abscess in my stomach.  So I had to start antibiotics for that.  Cipro and Flagyl.  I have since found that taking antibiotics in high or regular doses for an extended period of time gives me HUGE anxiety.  I don’t know why but I want to crawl the wall and rip my hair out.  It’s awful.  My surgeon ended up admitting me for a few days because by that time I was incredibly dehydrated and still had the abscess.  They gave me a PICC line (which is kind of a long term IV that goes up through your upper arm and a tube is inserted right near your heart).  I was able to get fluids and antibiotics through the PICC line daily for a couple of weeks – I’d just go into the infusion center everyday and have it done.  WORLD OF DIFFERENCE.  I finally started to feel human again.  I was still having trouble with my ostomy which now leaked constantly.  I’m not kidding that I figured out what sort of appliances I needed to fix it just about a week before takedown.  I still have so many different ostomy supplies sitting in a box it’s not even funny.  Part of me still worries though that I’ll need them someday and they are frickin’ expensive!  So, not ready to get rid of them just yet.

Anyway, the abscess set my take-down back an extra month but by mid-march I was ready!  I headed into what was supposed to be a short surgery, but because I had so much scar tissue, again, it took much longer than planned.  And I ended up with a VERY large incision in all the way up past my bellybutton.  I used to think it looked sort of like a vine with the staple scars and used to think about getting some sort of flowery tattoo there, but it has faded a lot in the last year.  It again, took me about 10 days for my stomach to start acting right again but I felt like a new person when I left.  They told me the first few months could be difficult and they weren’t kidding.  I still had bowel control problems and a lot of pain.  “Butt Burn” is a common gift you get with a J-pouch.  This is because the Large Intestine no longer absorbs the enzymes your stomach produces and so your stool really irritates the skin.  You don’t travel without Desitin or something, ever.  Lydocaine, Calmoseptine, I’ve tried a lot of creams!

Unfortunately it started to seem like things were getting worse, not better, as time went by.  I was constantly needing pain meds, which no one wanted to give me, but I had fissures and hemorrhoids and just pain all the time.  I finally told the doctor I was about ready for a permanent ostomy.  I just couldn’t take it anymore.  After another exam, she decided she could remove the hemorrhoids, possibly fixing the fissure, and we would give Humira a try, just as one last shot before the ostomy.  FINALLY, things started to get better.  I still have some control issues, but it’s nothing like before.  I don’t leave the house without my emergency kit (change of pants, depends, wipes, and cream) and I still hate traveling.  I usually take a lot of meds to slow things down and stop my bowel action so I can get out and about with a little less anxiety.  It’s never a sure thing, and sometimes I think there’s a good chance I will still have an ostomy in the future.  But right now, the Humira is helping.  Before Humira I was in the bathroom at least 30 times a day, now it’s about half that and it’s possible the j-pouch will continue to improve.  So FINGERS CROSSED!

I know I didn’t go into a lot of detail about the procedures, but that’s because there are much better blogs out there than mine for that- Before surgery, I read http://www.bloodpooptears.com and then I relied a lot on http://www.j-pouch.org.  Both sites gave me a lot of info on what to expect and what to keep expecting as I am still making this journey.

For me this has just been a long, exhausting, confusing couple of years.  Life has changed.  I have changed.  I’m still trying to figure out who I am now.  But I’ve survived this long… I intend to keep doing it!

——————————————

While I was in the hospital and sick at home, I watched a lot of Firefly and Buffy the Vampire Slayer.  A lot of people don’t get why I love these shows, but this is the video that tries to explain it, I guess.  Heroes that keep fighting.  It’s also one of my absolute favorite fanvids ever.  So hope you enjoy…. “The Whedonverse: This is War” by MrMorda898

Sunshine and Unicorns at the Hospital (IBD part 2)

So I’d left my IBD story at my second surgery the day after Christmas.  Things were going really well, so well that my surgeon said I’d probably be able to go home in a couple of days.  So I was really excited about that.  But 2 days later I was feeling so sick I couldn’t move without wanting to throw up.  I felt terrible!  Even the smell of food made me sick.  My doc came in the and decided I needed an NG tube.  I had no idea what this was, but she promised it would make me feel better.  This was Sunday morning, after ordering the NG tube, she left and the nurse went to work.  She explained that the tube would run through my nose down into my stomach and that she would have me take a big drink and swallow as she did it to help get the tube in place.  I was nervous as hell, but tried to do exactly as she said.  But I immediately started gagging, and I remember flailing about trying to breath.  I remember the nurse just pushed me down and held me there as she shoved that tube in.  I know she was just doing her best to do her job but I am not kidding when I say it was one of the most traumatic things to ever happen to me and this is coming from a rape victim.  It was horrible.  I was in tears and throwing up for the next 5 minutes.  I kept trying to tell her I couldn’t breathe and asked if this was how it was supposed to feel and she literally DID NOT RESPOND.  She said NOTHING.  Just went about cleaning up and then left the room while I had a bucket full of vomit and tears running down my face.  I can’t even describe how awful this experience was for me.

I spent the next 2 days lying still trying not to move or talk or swallow because everything was really painful.  I threw up a couple more times and in over 48 hours that stupid NG tube did not collect any fluids from my belly.  In fact, the same nurse told me hours after the “terror” that I probably didn’t need the NG tube.  But because it was the weekend, I couldn’t get it removed till I saw my doctor again.  Not only that, it was New Years Eve… I spent it lying alone in misery in my room.  My surgeon, who, had said she would be in the next day I didn’t see again at all.  In fact the following Monday she sent her partner in.  I had never met her partner… she was the type to come in a room and just tell you how it was then leave.  The next morning when I saw her again I lost it.  I kept trying to ask a question that she would not answer, she just kept telling me I wasn’t healthy enough to leave (which btw, had NOTHING to do with my question!).

Before she left I was in tears AGAIN, but SHE was defensive (and still wouldn’t answer my question) and I finally just said “fine. I’m done.  Whatever…”  So she left.  And I BAWLED.  The nurse was very kind, though she probably thought she had a real troublemaker on her hands… (this was a new nurse).  I finally survived the stay and got to go home.  But it was definitely one of the hardest weeks I had in the hospital.

The next 3 months were tough too.  The loop illeostomy was so much harder to take care of and I had a lot of problems with leakage.  By the time I figured out what appliances to use for the best fit, it was time for takedown.  Takedown was supposed to be pretty quick surgery.  In and out to close up the stoma where my small intestine had poked through.  Lucky me, my surgery took hours because there was so much scar tissue she had to clean up just to close the wound up.  I wasn’t supposed to have any new incisions, but I left with an even bigger one that I had started with.  And the way it was stapled up, I thought it would never look normal again!

It was about another 10 days in the hospital again- my stomach likes to tease me with a couple of good days before shutting down completely.  Then it takes a few more days to wake up.  It finally did though and I went home, pooping in a whole new way!

To be continued….

Since I haven’t posted any bellydance videos yet and I’ve been writing exstensively about tummies, I thought this would be a good place to show a favorite video:

Challenge Accepted…!

Wow.  So I’ve wanted to do this for a long time, but kept finding excuses not to get started.  But I’m finally doing it… so yay me!  No more putting it on the shelf of things I “should do”, “would like to do”, “will do”, etc.

So, a little about me and what I’m hoping to accomplish here.  I’m really stuck in life right now.  Emotionally, physically, mentally… just really, really stuck.  Afraid to move.  I can’t keep living like that.  I’ve literally made myself sick, and I’m just tired.  So- it’s time to get creative and try some new things.  This is one of ’em!

I was assaulted in my home nearly 16 years ago.  I say assaulted because that’s usually an easier word, but more specifically, I was raped at knife point by a man in a mask who threatened to kill me if I told anyone.  I will write more about this, but it’s more than I’m ready to get into right now.  Since then, I’ve struggled with anxiety, depression, insomnia, PTSD, and just fear in general.  I kind of thought this would be my big trial in life- the big thing I’d have to work through and overcome.  And it’s been a fairly up and down road for the most part.  I’ve had times where I didn’t function so well, but mostly, I pushed through it all and did what I had to do to get through life.  I figured I was managing it as well as could be expected, I guess. I was tired, pretty much all the time, but didn’t feel like there was much I could do about that.  As long as I made it to work each day, I called it a success!  It took ending up in the hospital to realize that maybe my idea of success was a little off.

I’d been having stomach pain for about 2 years.  It started sort of small, but kept getting worse and worse.  I didn’t exactly ignore it, but I was so sure it was just part of the emotional/physical fallout from the assault.  So I went back to therapy, and tried to address it from a more holistic angle.  I didn’t love my doctor at the time and just didn’t really believe she’d tell me it was anything other than stress anyway.  So I kept putting off seeing an MD.  At the time, I was working as a massage therapist and was surrounded by chiropracters, naturopaths, accupuncturists, etc.  I pursued all these things hoping that in conjunction with therapy my stomach would get better.  BUT that was not to be.  It was good most of my clients couldn’t see my face as I was working, because there were times I was nearly floored by sudden stomach pain and it was all I could do to keep massaging without doubling over.  I started dropping weight REALLY fast.  And pretty soon, I couldn’t get through a single appointment without having to excuse myself to use the restroom…. which was mortifying.  I felt terrible that these people were paying me to have a nice relaxing massage and I had to interrupt- sometimes even wake them up- to tell them I had to run out for a moment.  FORTUNATELY, the majority of my clients had been with me a very long time and knew I hadn’t been feeling well.  Everyone was very understanding and no one seemed to mind much, but I hated how unprofessional I felt.  As things kept getting worse, I finally found a great new doctor, and she immediately sent me to a GI specialist.  A couple of weeks and a colonoscopy later, I was diagnosed with Ulcerative Colitis.

I remember leaving the GI’s office that day thinking, “Well, it doesn’t sound that bad.  Take these meds, sounds like things’ll get better and back to normal soon.”  HA.  I had no idea!  Less than a month later, I was in the hospital and thus began the long, long road of IBD.

…I think I’m going to stop the story there for now because if I keep going, this post is going to get rather lengthy, and frankly, the process of setting up this blog for the first time took a lot longer than I expected!  But hopefully I’ve given you an idea about where I’m coming from and what I’ll be writing about.  Trying to work through years of stored up trauma has always been a lot of work.  Trying to navigate a chronic illness on top of that has been exhausting.  So I’ll probably be writing about those things a lot, but you can probably expect to see some other things thrown in the mix.  In general, I’m pretty introverted so I have many things swirling around in my brain that I don’t share a lot in regular conversation.  I love art, science, music, books, tv and movies… I’m sort of a youtube fanvid addict.    I’m a big tv geek and find that TV can be REALLY therapeutic sometimes.  So I’ll probably post about that stuff from time to time.

Truly, this blog is for me.  Obviously, I hope people read it, but most of all, I need to give voice to all this crud I’ve held inside for so long.  And I’d like to think that some of what I have to say might help someone else who is dealing with some of these same things.  It’s always been a comfort to me to find I’m not alone.  So… yeah.  I hope this is the start of an excellent adventure!  Thanks for reading!

 

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I found this on pinterest.  It’s my current mantra…

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