Decisions, Decisions

It’s been awhile since my last real update.  Healthwise, I’m doing pretty well.  The stoma skin issues I was having have resolved (debriding agent and calcium alginate really works wonders), and I haven’t had any recent complications.  But life keeps happening, and difficult decisions must be made.  I need to have another surgery.  My loop ileostomy is not a permanent solution and will degrade over time.  Whether it’s another try at the takedown, or a reversal of the J-Pouch procedure and creation of a new, permanent end ileostomy, I need another surgery.  The only real question is when.

For the takedown, the longer my J-Pouch sits dormant, the longer it will take to “wake up” and reach full functionality, which will mean more days and weeks of extreme discomfort (i.e., dozens of bathroom trips and no sleep) while it slowly improves.  Then again, the takedown went really bad last time, resulting in an emergency surgery to reverse the procedure, so maybe it’s better to wait.

For the permanent reversal, the longer I wait, the longer I deal with a sometimes-finicky and not comfortably placed loop ileostomy (which has had a major impact on my wardrobe).  Then again, those are minor inconveniences compared with the thought of a lifetime of an ileostomy of any sort.  An ileostomy definitely better than being sick with ulcerative colitis, but I’m otherwise not a fan.

So what to do?  Well, first, we need to consider the other variables.  First, work.  My employer was extremely generous with my leave last time, and I have no doubt they will support me whatever I decide, but I don’t want to push my luck.  Both financially and career-wise, it may make sense to wait a bit.  Friends and colleagues tell me not to worry about that, but it’s impossible not to.  It’s easy for folks to say, “just do what’s best for you,” but the fact of the matter is doing right by my career is what’s best for me.  It needs to be a consideration.

Let’s see, what else?  Oh yeah, my wife’s pregnant.  Amazing.  A miracle.  Another variable.  She’s due at the end of September, and I want to be the best dad I can be when the kid arrives.  Physically.  Although my ileostomy is a livable situation, it’s far from ideal.  Due to its placement on my waistline, wearing presentable clothes that keep things buttoned up is not comfortable.  So when I’m home, I let my shitbag fly.  But I want to be able to have guests over to see the baby without being uncomfortable—either because I’m concealing the bag, or because I’m letting it hang out.  I want my wife to be able to take a picture of me sleeping on the couch with our baby on my chest without having to Photoshop out an ostomy appliance.  I want to be able to wrangle our baby to change a diaper as it squirms and wiggles, without fear of getting kicked in the stoma.  I want to be able to horse around, ride a bike, sled, swim, go on roller coasters, just live life—all things I would worry about with an ileostomy.  I want to be whole.

“You are whole,” one of my doctors told me last week.  Pretty easy to say when you store your shit on the inside.

Being “whole” for me—right now, as I write this—means trying the takedown again.  If I don’t do it before this baby arrives, it may be quite awhile before there is a “good time” to try it again.  Friends and family tell me not to worry about any of that; it will work out.  But none of them can begin to understand what this feels like, or how badly I want to be that come September.

I have to have the surgery.

But I’m scared shitless about it (no pun intended).  The last takedown was awful.  Hopefully much of that was due to the infection, but it’s impossible to know.  And even if the next takedown goes right, it promises to be a slow recovery.

If I’m going to do it, I need to do it soon to give myself maximum recovery time before the baby’s due.  Not only do I want to be “whole” when this baby comes, but I also want to be an active participant in the second half of my wife’s pregnancy, during the birth, and in the weeks and months after.   My wife doesn’t need to take care of me and a baby.

If the takedown doesn’t go well, or my recovery is slower than expected, I worry about being too sick to go to the hospital or having to run to the bathroom during delivery.  Of not being able to be there.  Of not being there.  I’ve worried about this at least once a day since that amazing day 5 months ago when my wife greeted me at the front door with a “Baby on Board” sign taped to her stomach.  It’s a lot.

So where does that leave me?  I met with a different surgeon last week to review all of my records with fresh eyes and ensure we’re not missing anything that could lead to problems (he assured me we’re not).  I’m meeting with my surgeon in a couple weeks to talk everything over one more time.  And I’m scheduled for surgery on July 2.  Until then, I’ll probably be worrying about it.

This entry was posted in Ileostomy, J-Pouch, Surgery, Uncategorized and tagged , , , . Bookmark the permalink.

8 Responses to Decisions, Decisions

  1. Adam says:

    Ben, wishing you the very best in the coming days with all your decisions. And, BIG FRIGGIN CONGRATS to you and your wife with the family expanding! that’s great news. Way happy for you two.

  2. Kari Coppinger says:

    Appreciate your sharing. I’m sure you will bless others in so doing. I’ve marked July 2 on my calendar and will be praying for successful surgery and for you to feel some peace along the way. End of September is on my mind too. I wonder if our kids will share a birthday!

  3. John Casey says:

    Good luck with your operation and please let us knowe how baby and mom will be doing.

  4. CHRIS says:

    What happened when Ben had his Ileostomy reversal – does anyone know ? – Perhaps I have somehow missed the continuation of His Blog / Ileostomy / Stoma experiences ? – Chris

    • Ben says:

      Thanks for checking in. You haven’t missed anything, as I’ve yet to do the second attempt at the takedown. My daugher’s early arrival on 7/1/12 through a wrench in the works, life’s been busy, I’ve been healthy, and I’ve not scheduled it again. Life with an ileostomy is not perfect, but it’s manageable and (mostly) predictable. I still think about trying the surgery again from time to time, but it went so poorly last time, I am reticent to do so. If my ileostomy ever starts holding me back or limiting my quality of life, I will reconsider, but for now, all is well. The devil you know…

      • CHRIS says:

        “Hello Ben”, Thanks for replying so quickly.

        After I had surgery to remove a Cancer tumour at the junction of my Colon and Rectum I also have an Ileostomy / Stoma and Bag [since February this year] – I absolutely hate it and I have had a lot of problems regarding the bags leaking.
        This has been made a bit better with some Stoma accessories including some elastic adhesive tapes which have made the bags much more secure.
        I am waiting for a Gastrograffin Enema test later this month to see if the join between my Colon and Rectum has healed and is sealed and hopefully if that test is O.K. I will be scheduled for the Ileostomy reversal in June.
        Although I have already been told that the Surgery in June is totally dependant on what other surgeries are required to be added to the waiting list between now and then – while I obviously understand that various Surgeries must be prioritised according to urgency I am guessing that their comment is to prepare Me for a much longer wait for the reversal surgery.
        I am obviously hoping that the reversal will go well – apart from the fact that a general anaesthetic is used I had thought from my Surgeons comments that the reversal was a `very simple operation` – until I started looking online for People who had experiences such as yourself.
        I know that probably some of what I have read would be from people who had more of their Colon / Rectum removed in their Colorectal cancer surgeries / Digestive system surgeries but I thought that the Ileostomy reversal surgeries were all similar ?
        Thanks again for your reply Ben – I really appreciated it.

        “Good Luck for the future”. Regards, Chris

  5. Ben says:

    A standard ileostomy reversal like what you’re having is generally considered a pretty straightforward procedure. The problems I had had nothing to do with reversing the ileostomy and everything to do with the J Pouch (which you don’t have to worry about). Hope it goes well for you!

  6. CHRIS says:

    Thanks again for your reply Ben and for your positive comment about the Ileostomy reversal surgery.
    I do hope that my Ileostomy reversal surgery will go well and that my Colon will start working again without any problems regarding me being unable to control my bowel – I recently read some worrying stories about that from people who did have problems.
    I have not had the opportunity to ask my Surgeon whether my Colon should be expected to function as normal after what would be about a 4 Month period of inactivity – or whether I should expect some incontinence problems ?
    As You will know depending what one finds on the internet about almost any subject you can find either the most positive comments / `information` or the most negative / almost `frightening` details.



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