I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, October 19, 2013

J-pouch Reality

Well, here I am over a year out from my proctocolectomy and almost a year out from my takedown.  The main purpose of this blog is to spread awareness and to reassure and bring hope and inspiration to people who may be suffering from similar conditions and might be afraid or nervous of what to expect.  For that reason I have tried to remain pretty strong and positive throughout my posts.  However, I wouldn't be doing anyone any favors if I was to totally candy-coat the truth.  Therefore, this post will be about the daily frustrations and hardships of living with a j-pouch... what to realistically expect.

Yes, you can continue living your life.  With a functional j-pouch you should still be able to work, travel, participate in sports, etc., without having to worry about suffering from malnutrition or blood loss.  However, bowel function will NEVER be as easy as it is with a healthy colon and rectum.  Below are some of the long-term effects to be prepared for.
  • Unpredictable functioning.  Frequency and consistency can change on a daily or even hourly basis with seemingly no cause or change in diet.  You can feel fine one moment and then feel like you can't be far from a toilet the next.
  • Both increased frequency as well as certain foods (certain spices in my case) can cause the infamous butt burn to return, which can be very painful at times.  It can also cause itching, irritation, and mild bleeding on and around the anus.
  • True you can eat just about whatever you want..... as long as you are willing to live with the consequences.  Certain foods (whey and dark chocolate for me) will cause significantly increased frequency to the point that I'm going multiple times per hour.  If I eat too much fiber, evacuation can become incredibly difficult and sometimes painful, with the constant urge to evacuate but inability to let much of anything out.  But if I don't eat enough fiber, consistency can become so thin that it is difficult to maintain continence.  Due to all this, diet can be a bit of a balancing act.
  • With a healthy colon and rectum you can feel the pressure of needing "to go" slowly build over the course of an hour or two, so you know when to prepare to make a bathroom stop.  With a j-pouch, it is always all-of-a-sudden.  Because the rectum wall and muscles are all gone, you don't have any sensation down there until it reaches the anal canal, which means that you can't feel anything until it's ready to come out the back door.
  • When you do have to go, although most j-pouchers can hold and control their bowels, that doesn't mean it is comfortable.  It can be very uncomfortable or even painful to hold it in when you have to go.  It is sort of like having a mild case of diarrhea at all times.
  • You have to have post-evacuation cleansing supplies wherever you go.  If I forget to bring my flushable wipes with me or if I forget to refill my travel-pack in my purse and I am away from the house, my only choices are: 1) Don't go, which can be very painful and sometimes not an option.  2) Go but don't get all the way clean, which can cause rash, irritation, butt burn, and itching around the anus.  3) Go and use regular TP to clean yourself, which for me means I have to keep wiping until I am literally raw and bleeding from my anus.  Sometimes I try to run the TP under the faucet to help clean more easily, but then the TP generally likes to disintegrate in my hand.
  • I wake up between two to five times per night to go to the bathroom, which means I hardly ever get more than three hours of sleep at a stretch.  This means I'm generally in a constant state of mild sleep deprivation, which can have an affect on mood, ability to handle stress, overall health, and eventually lifetime longevity.  I try to schedule extra sleep time at night and to catch up on the weekends by sleeping in as much as I can.
  • Increased gas.  If you've been living with certain diseases, you may be somewhat used to this already.  But gas comes  much more frequently with a j-pouch than with a healthy colon, and if it happens to be behind a small amount of stool, you can't pass it without the stool coming out too, which means I frequently run to the toilet just so I can pass gas.  In the cases that I do not have to run to the toilet to pass gas, sometimes it is smelly, and occasionally it is noisy, but most often when I pass gas, no one can hear or smell it.
  • Wherever I go, I have to be self-conscious about the noise I make in the bathroom.  Whether I'm in a public restroom, using my restroom at work (only one door between the toilet and the main hallway where students and staff are passing by), a guest at a friend's house, at my fiancee's house, or even at home with my roommate around, I know that anyone in the vicinity can hear my loud bathroom noises due to the explosive nature of the gas and stool as they exit the body.  I have to deal with this 5-15 times in a 24-hour period.
  • Almost every time I go, that same explosive way the stool exits the body tends to spray flecks of stool all over the back of the toilet bowl, the underside of the seat, and even the top of the seat occasionally.  This means that at home I have to clean the toilet several times a week (or daily if I want it to stay clean), and when at someone else's house I have to inspect the toilet behind me and use TP to wipe down any messes I've made.
  • Certain sexual positions (specifically the ones that tend to shorten the vaginal canal for deeper penetration) are a bit more sensitive/painful.  Although I have never had a leak during sex, sometimes the jostling of sex can make me feel like I have to go... rarely during but often at the end of sex, meaning I can't always just lay there relaxing and enjoying the post-coital glow afterwards.  I will usually evacuate right beforehand in order to reduce chances of feeling the need to go during or after sex.
To people who are nervous about life-long symptoms, these effects can sound like a lot to deal with.   However, it is important to remember that they are still better than living with the disease.  They are not life-threatening, and their effect on overall quality of life is minimal compared to living with severe ulcerative colitis or Crohn's disease.  I made this choice in order to save my life (which isn't really much of a choice, when you think about it), but I still don't regret having surgery because whatever difficulties I live with today are seriously chump change compared to what my life was like before my first surgery, when my UC was raging and I spent all day in bed, writhing in pain and running to the toilet 20+ times per day.  At that point I had almost NO quality of life, whereas now my quality of life is fairly high.  Again, it will never be quite up there with someone who was never diagnosed with a disease like this, but it is certainly the best I can hope to expect with the circumstances I was given to deal with.

On more of an athletic note, I have been feeling somewhat apathetic regarding working out the last couple of months, and I'm not sure why.  I think it's been due to accepting the long-term effects of life with a j-pouch as well as dealing with my other health concerns (mainly the tumor in my kidney and it's testing and treatment).  However, in the last week I have felt a growing determination to regain my prior level of fitness, muscle development, and strength, and so I have fresh motivation to jump on and stick to my workout routine yet again.  Yes, it will be a little more challenging with a j-pouch, but it is by no means impossible.  Starting this Monday I will be attending a dance class, attending a yoga class, strength training, and running again all on a weekly basis.  I'm ready to feel like a fighter again.

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10 comments:

  1. Happy New Year, dear girl. I hope it's a wonderful one for you and yours...with many more happy years to follow.

    Catherine

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  2. Thank you for this honest and accurate post on life with a j-pouch!

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    1. No problem - I try to tell it like it is! :-P

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  3. That is a great article.. I have severe IBS and wow everything you say is true.. It truly affects my life.. I am a marathon runner which is interesting sometimes.. But God is in control..

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    Replies
    1. I'm still hoping to be able to up my mileage to even a half marathon someday. Tip o' the hat to you, Anonymous, for making it to the full marathon level - I'm impressed!

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  4. Did u not sleep at all at first

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  5. Michael "The Cyborg" NelsonDecember 2, 2014 at 2:48 PM

    I like how your up front and honest with your j pouch.........God Speed minus the predictions.........

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  6. Hi Just wondering how life and your health have been for you since your last post. I went through the first surgery in January of this year and the take down in April. I'm doing better. I've had a PICC line since March. Ready to have it removed and ready to move on with my life. I, too, am a teacher. What has teaching related to your health been. Hope to hear from you.

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  7. Thanks for the post. People who are really concerned about their Ostomy health may take help from the Ostomy Lingerie so as to make their life more normal and as usual. Hope so that this will help you in making your life more easy and comfortable as they are specially designed for Ostomates.

    ReplyDelete

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