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.

 

 

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:

Grab a Spoon (IBD part 1)

If you’re not familiar with The Spoon Theory by Christine Miserandino, I highly recommend reading it.  It gives a pretty picture of what it is like living with chronic illness.

I only recently heard of it myself, and the most obvious application for me would be the IBD diagnosis, but I really felt this way for so long before IBD.  I think I felt a shortage of “spoons” from the time I was raped onward.  PTSD will treat you just like any other chronic illness.  It exhausts you.  It makes you consider every outing or activity very carefully, because you know you only have so much energy to spend.

But the rape isn’t what I want to talk about right now.  I figured I ought to tell the story of my IBD journey.  As I mentioned before, I was diagnosed and started on the basic meds, Asacol, Flagyl, and Cipro.  The first couple of days I felt SO much better and I thought that would be it.  Manage the meds and end of story!  Wrong.  After about a week I started doing worse, still dropping weight and having a lot of nausea.  I woke up one day and knew I wouldn’t make it to work as I was already throwing up.  I saw my MD that day and she gave me some IV fluids and a shot for the nausea.  I left her office feeling much better.  I called the clients I’d had to cancel and rescheduled them all for later in the week, fully expecting to be back to work the next day.  At about 4 am that night I started throwing up again and this time it looked like there was blood.  Now, for those of you who are unfamiliar with IBD, let me say IT IS NOT PRETTY.  One of the downsides is when you start to lose bowel control.  Not fun.  And sorry, but I don’t plan to sugar coat too much on this blog.

So when I saw I was throwing up blood, I called the hospital.  I kid you not, while I was on the phone with her I started vomiting again and of course, shitting myself.  Not my brightest moment, really.  They wanted me to come into the hospital, so my husband came home from work and took me in.  The terrible part- and let me tell you- this sealed our marriage right then and there- was there was a mess at home I’d been too sick to clean up and when he went home later that night, he had to take care of it.  That’s love, let me tell you!

Anyway, over the next 10 days, we tried steroids, antibiotics, and finally Remicade.  It seemed the Remicade was working so I finally got to go home, but I couldn’t believe how weak I was.  I remember trying to fold some laundry and just getting out of breath.  And none of my clothes fit.  I had lost so much weight!  Oh, and one interesting thing I wanted to note about that first trip to the ER… it was exactly 14 years to the date that I was sitting in the ER after my assault.  Coincidence?  Can’t help but wonder….

So, at that point, I knew it would be a while before I went back to work.  I was just so exhausted and I knew I just didn’t have it in me.  And as much as I tried to take care of myself, about 6 weeks later I was in the hospital again for dehydration.  I was generally using the bathroom around 30 times a day and no matter what I ate or drank, I just couldn’t keep up.  The second stay was much shorter, they gave me my 3rd Remicade treatment, lots of prescription strength Imodium and sent me home.

By now, JM (husband) and I had had a few conversations about what this was doing to our financial situation.  The reality was that we just couldn’t make it without my income.  So over the next month, we packed our life up and moved in with my parents.  They were pretty great about trying to give us our own space, but it was tough, especially on my husband who now had to drive an hour each way to work.

When I went in for my 4th Remicade infusion- these are an IV infusion that usually take 3-4 hours depending on the person.  Within 15 minutes of my infusion, I couldn’t breathe.  So that was it.  No more Remicade.  I’d developed an allergy.

At this point, it had only been 3 months since diagnosis but my symptoms had gotten worse and worse.  When I talked to my GI, I asked him if surgery was likely inevitable at some point.  He said it probably was, so he sent me to consult with a colorectal surgeon out of state.  In meeting with her, she had looked over my records and the scope results from original diagnosis.  She felt I needed surgery ASAP.  In fact, she was ready to get me into surgery the following week, but promised that this would be “curative”- that’s what they all say about Ulcerative Colitis and having the colon removed.  It will be a cure for the UC.   I was completely overwhelmed, but felt like if I was going to have to have this done someday anyway, it was better to do it now before I got sicker.  And I didn’t see the point in exposing myself to harsher and harsher meds if it wasn’t likely to fix things in the end.  I was very nervous that I might end up with a permanent ostomy, and worried about what people would think.  I worried that people would make jokes or have silly names for me when I wasn’t around.  And I remember spending the next 2 weeks staring at my stomach a LOT.  I knew it never look the same.  I loved to bellydance and I didn’t know if I’d ever feel comfortable doing it again.

Most UC patients are candidates for what is called a “J-pouch.”  This is usually a 2 or 3 step process.  My surgeon felt that because I had been on so many steroids I would be better having this done in 3  steps.  The first surgery was scheduled 2 weeks out, in September (1 week was just too overwhelming to me!).  In the first surgery, my Large Intestine was completely removed.  I had a temporary “end ileostomy” created from the small intestine.  It was kinda fascinating.  The body really does live and breathe from the inside out.  I can’t even describe what it was like to watch.  I know-  it was kinda gross too, and most people didn’t share my fascination, but it helped for me to know that it would hopefully be temporary.  It took me about 9 days in the hospital.  The surgeon said I “had a sick, sick, sick colon,” and she didn’t know how I had lasted that long.  The pathology that came back showed signs of dysplasia (a pre-cursor to cancer) and the tissue was very watery and thin and could have ruptured at any time.  So most likely having surgery when I did saved my life.  (Sometimes I have to remind myself of this!)

My system was kinda slow to wake up and allow me to eat normally.  But finally I got to go home.  Healing took a while, in fact I had a major blockage the second night I was home and ended up in the ER.  Thankfully I had thrown up enough that things sorta fixed themselves.  No one at my local (small) hospital had much experience with ostomies- especially so fresh out of surgery.

We waited 4 month before having the 2nd surgery.  And I can definitely say they were the best 4 months I’d had through this whole experience.  It wasn’t perfect… there’s a bit of a learning curve with an ostomy.  I figured it out pretty much before the next surgery which I had the day after Christmas.  This surgery consisted of having the rectum removed and then they took the end of the small intestine and created the j-pouch.  They basically stitch it up into a J shape and create a reservoir to take over some of the function the large intestine used to perform.  The pouch needed time to heal, so I still had an ostomy, but this was a “loop ileostomy.”  TOTALLY DIFFERENT.  It’s higher up in the intestine so your body has less time to absorb water and it’d MUCH harder to get a good fit from your ostomy appliances.  I did not find this as fascinating 🙂

 

I think I’m going to break this up into two posts because the story is getting quite long!  And for the mandatory video (sorry not sorry)- I choose this because oddly enough this song is playing in the background while I am writing now and because I just wrote about being on the hospital for Christmas and I was so, so grateful for Supernatural reruns on TNT.   So yes, it’s a SPN video (spoilers through season 3 I think.)  Here’s “On Without End (Carol of the Supernatural)” by Loki:

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