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.

 

 

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