Crohn’s Update: Surgery and Post-Op Condition

Warning: as usual with my posts regarding my struggles with Crohn’s this post contains frank discussion of basic bodily functions not usually discussed in polite company. If talk of peeing and pooping make you squeamish, you may want to just move along.

Giving the “thumbs up” after surgery!

Those of you have read my previous post know that I had gone into the hospital to have what the medical staff referred to as an “ileostomy takedown” or in other words, my internal plumbing was reconnected and all organs that belonged inside my body (the stoma, which was a portion of small intestine pushed out through my abdomen for the removal of waste via an appliance aka “the bag”) were put back inside. This is an operation I had been looking forward to. Even though the creation of the stoma quite literally saved my life, it was an inconvenience to deal with – some of the issues I have described in earlier blog entries.

So, how did it go? Pretty well actually. According to the surgeon the surgery could not have gone better. Unfortunately, this does not mean that there were no issues. The biggest one, from my perspective, was that the epidural given to me to control pain also caused an issue where I could not release my bladder. You see, the epidural provided strong drugs to my mid-section which essentially turned off nerve receptors. The good news is that thanks to this treatment I was up and around pretty quickly. The bad news, I couldn’t urinate. This led to not one, not two, but several different catheters being inserted into my uretha – an uncomfortable procedure at best and in my case painful as apparently one of the times my uretha was “nicked.” As bad as not being able to go was, the sight of blood coming out of where blood should never come out was a bit unnerving to say the least. Plus this caused some pain in my you know what, which prevented me from trying to go. At one time the urine back up was so bad that after one catheter I released 1.2 liters of urine. For comparison, the average male bladder maxes out as about 400 – 600 milliliters. My bladder was pushed to its limit. This extended my hospital visit by a couple days as they wanted to be sure that my urinary function was normal before sending me home.

Well, that and the unexpected vomiting.

The third day post-op my gut seemed to be waking back up. I didn’t actually pass gas or stool yet, but my bowel sounds were active. In fact, one nurse said my gut sounded “hyperactive.” Which usual meant that things were starting to move through my system again and my long unused colon was waking up (so to speak). Wrong. Just as I was about to try to eat some lunch my guts went into full revolt. And very much like the girl in the Exorcist I began spewing everywhere! Since I hadn’t eaten much what came out was a build up of gastric juices and other liquids. The good news is that I learned I could still move quickly despite any lingering internal pain, the bad news is that we discovered how much liquid I could hold in. Turns out, quite a lot.

After these two setbacks, things started to improve quickly. My bowels began moving on day 4 PO (post-op), pretty much pure liquid but I was passing stool and gas. My bladder kicked back in later that same day thanks to some Flowmax and the discontinuation of the epidural. So by day 6 PO I was able to come home.

Now, one day shy of three weeks post-op, my stool is still pretty liquid with signs of solids every now and then. Still going more often than I’d like, but it’s way more controllable than the stoma was – plus no more bag to change frequently and more importantly, no accidents since my surgery. My staples have been removed and my new scar is healing. I have a shallow hole where my stoma used to be which is getting shallower by the day.

Still several more weeks before I can lift anything heavier than a gallon of milk, but I can walk and stand upright. I even have permission to get on my exercise bike and next week I’m going to ask about being allowed to work from home so I can at least catch up on emails. Things are looking up and I have no regrets about undergoing the surgery.

Physically, I did lose some weight again through the ordeal and am now at about 190 pounds. The lightest I’ve been in some time. Given how fast food is still flowing through me, I may get down to the mid-180 range before things settle down. The good news though is that my bodyfat% seems to be dropping in relation to my muscle mass. So though I’ve lost some of both fat and muscle, the fat loss has been greater. I’ll be in a good position for rebuilding once I’m able to lift again.

About 3 weeks post-operation. My shoulders seem to have lost some mass again.

Arms are a little smaller and flatter, too. The shirt I’m wearing used to be much tighter and now I have the dreaded sleeve gap.

Onward!

Crohn’s Update: Accidents

Warning: this blog entry contains very frank content regarding bodily waste. It may not be appropriate for all audiences. Plus, you may learn more about me than you really want to know. But, if you’ve been reading my blog we both know that ship sailed a long time ago. 

I mentioned in an earlier blog (Crohn’s Update: Life as an Ostomate – What I’ve Learned So Far) that “accidents” will happen. Yesterday was for me the perfect storm of accidents and I thought I’d share to illustrate my point.

You should understand that I had last changed my appliance on Saturday morning. I should change it every 3 to 4 days in the perfect world, so I had planned to change it in the evening before retiring for the night as by my count that would have been 4 full days.  It’s also best to change the appliance (aka “the bag) when the stoma is less active. Which is usually in the morning or two or three hours after I last ate. In general though, I was feeling a little cocky as this had been the longest I had gone without incident in the past 4 weeks. I thought that I had gotten the hang of it and there would be nothing but smooth sailing from here on out. Riiiight.

I got through most of the workday without a problem. Then about an hour after lunch – when I knew my stoma would be active again (by the way, some people name their stomas – and possibly other body parts but that’s none of my business – I haven’t. My fingers don’t have names nor my toes, why should the stoma be any different?). I felt the  the bag fill up. I went to the restroom – conveniently located across the hallway from my office – to empty it and discovered that I had a small leak from the left side of the ring. The good news was that the dressing from my wound had absorbed most of it so my clothing was still dry including my underwear. I didn’t bring my emergency kit (extra bag, seals, etc) into the restroom so I cleaned up and went back to the office, shut the door, took out an extra seal from my kit and patched the leak. Problem solved!  I could make it through the rest of the day – darn, I’m good.  But, I determined to change the bag as soon as I got home.

I went the rest of the workday without a problem, as expected – yay, me again – and on the way home I remembered that I needed to stop at Costco to get my new membership card (I had signed up last week during a promotion at work). My patch was holding so I exited the expressway and went to the store.

Got my card with no problem, except the wait – not sure what the issue was but there were about five associates and one supervisor crowded around a cash register trying to help one customer while the line grew longer. Not Costco’s best “customer service” moment, but having spent time in retail I understood and waited patiently. Unlike the woman in front of me who left and the man behind me tapping his toe. But, I digress. I felt that my bag was getting a little full so after I got my card I went to the restroom to empty it before I looked around the store. I noticed the $1.50 hot dog combo and thought that I might have found my dinner.

In the restroom, much like anyone else would do, I sat down to do my business. For those who haven’t dealt with an appliance before, I found that it’s easier to empty from the sitting position. When standing it splashes too much and there’s a greater chance of mishap – or so I thought. This does involve dropping “trou” as they say and I’m sure most of you are familiar where the clothing ends up in front of you and the bowl. I removed the velcro fastners which keep the opening of the bag closed and flipped the opening towards the bowl. Instead, I release too soon and miss completely! The the contents, mostly liquid, spill onto the floor, into my pants and my underwear. PANIC ensues!

I wad as much of the flimsy toilet paper as I can and blot up the mess from the floor, my pants and underwear. I got the floor pretty clean, for a public restroom at least and I was confident the next person wouldn’t notice the spill or end up with any residue on their clothing. My pants and underwear, not so much. I felt that I had no choice at this point. I wasn’t about to go to the sink half naked to rinse off the remaining waste and I couldn’t sit there all day waiting for my clothes to dry. So, I pulled up my clothing, fortunately the contents all spilled inside and I didn’t see any obvious stains on the exterior of my clothes, winced at the wetness, untucked my shirt to cover as much of my pants as possible, and exited the stall. I washed my hands while checking myself in the mirror to see if I had covered up any spots that might start to show. On the way out I grabbed a handful of napkins from the snack counter (hey, I’m a member now) and passed up the quarter pound hot dog with drink for $1.50 (sigh) and headed straight to my car. “Have a nice day!” the cheerful attendant (guard?) at the door called after me.  Too late ma’am, too late.

At my car I put down the napkins on my seat to hopefully absorb any liquid that might soak through and drove home sitting in my own filfth (if you have a better way to describe it, feel free). Lovely…

Once at home I was pleased to find that the napkins I was sitting on were still dry and that the stain guard of my new pants, pleated to better hide the appliance, must work both ways as they seemed to contain the remaining moisture pretty well. Changed my clothes and checked my appliance. My patch from earlier in the day was still holding so I thought I might as well go visit my mother and like a good son take some laundry with me (I didn’t want the stain to set into the afore-mentioned new pants). For those who don’t know, unlike many adults living on their own I don’t own a washer and dryer. Hey, I have to have some social life right? And what’s more fun than a trip to the laundromat on a Saturday night? But I digress.

My mother was gracious enough to allow me the use of her washer and dryer while I helped her with the crossword and we watched a little television together (Wheel of Fortune, Jeopardy, and NCIS for those interested). When NCIS was over I folded my clothes, noticed that my bag was once again filling up so I emptied it, and then headed home to change the appliance. Life was good and everything seemed fine.

I got home, took my laundry in and started to put it away when I felt a wetness in my pants. A wetness that started to flow down my leg – down both legs! Dagnabit, I exclaimed, I sprung another leak. I once again “dropped trou” only to discover that I had not sprung a leak. I had neglected to re-attach the velcro straps after the last time I emptied the bag. My now active stoma was dumping itself straight through the bag and down my leg. At this point I did what any self-respecting ostomate would do in this situation. I uttered a few more well chosen exclamations (shoot, crud, and golly-gee if I recall correctly) and cried.

In that moment I just wanted to be normal again, I was tired of having this thing attached to me (after only 6 weeks), I hated that I was having more problems and accidents in one day than I think I ever had in 30 years of suffering with Crohn’s. I felt like a freak who couldn’t take care of himself and I just wanted it to go away.

Then, like a big boy, I stood up. Realized that the pity party wasn’t going to do any good. Also realized that two of the three incidents I just had were my own fault for being careless. Took myself and my jeans to the shower and cleaned up. I also thought of that saying, “people say to me ‘I don’t know how you do it’ and I reply, ‘I wasn’t given a choice.'”

Then I changed my bag, watched some reruns on television (American Dad followed by Hogan’s Heroes) and went to bed, warm and dry.

As Miss O’Hara would say – tomorrow is another day.

Onward!

Crohn’s Update: Good News and Frustrations of a New Ostomate

As I sit here eating my lunch – because my appetite is still quite strong – I was thinking about a few things regarding my surgery and recovery. Thought I’d take a few minutes to share them because, why not?

Healing: the healing process is frustrating slow. Not regarding the stoma, that seems fine, but the darn incision. Most of the incision is healed and scarred (lovely) but a couple spots just don’t seem to want to close and keep oozing. Not blood, but exactly what you think of when you hear or read the word “ooze.” So, I’m changing dressing twice a day to keep up with the flow and trying not to get too grossed out when I do. Yesterday at the doctor’s office he essentially cauterized a couple areas of what he called “granulation.” When talking about skin healing, granulation is the process where new tissue is created to fill in the gaps of the wound. It starts from the base up, so for a deep wound it takes some time. However, in my case, I had a couple areas that overgrew and formed small lumps on the scar. These may have been infected so the cure was to remove them chemically and one by “snipping” it off. The Good News: If all goes well, my oozing should stop in about a week or at least dramatically slow. I’m looking forward to not changing dressing.

Output: I can’t seem to get the hang of regulating the output of my stoma. Everytime I think things are settling down – so I don’t have to empty out every hour – I backslide. I’ve discovered that lemonade is a problem so I have to avoid that. I’m taking imodium like it’s candy (up to four pills, four times a day), and have eaten enough toast, applesauce, bananas, and rice krispies to bind up an elephant! But, I’m spending more time in the bathroom now than before the surgery. The Good News: The doctor thinks I’m making progress and have the tools I need to get there. I’m not de-hydrated and my weight is stable. He thinks I look “great” so there’s that. Of course, he’s only seen me two times now (part of the post-surgery clinic).

Breakage and Leakage: not fun anytime, especially in the middle of the night or when out and about trying to do normal activities. The Good News: I seem to have re-gained the hang of when to change my appliance. No accidents for more than a week now (knock wood).

Enough venting. According to the doctor I’m free of all lifting and exercise restrictions. I plan to start working out – slowly – this week and get back to tap dancing again next week.

And, then there’s my trip to Florida in about two weeks…

Onward!

Crohn’s Update: Life as an Ostomate – What I’ve Learned So Far

Well, it’s been a little over a month since I became what is known as an “Ostomate.” This is a person who’s insides have been altered to create a new opening for his or her intestine to empty through (aka a stoma).

Hopefully, to assist the few other new ostomates who may stumble across this blog here are a few things I’ve learned so far. Some the doctors, nurses and dietitians warned me about. Most, they did not:

  1. No matter how careful you are, no matter how often you empty your appliance, you will have accidents. It might be a leak or a blowout – but it will happen.
  2. Some of these will occur at an inopportune time like work (once), before a social function (once), or in bed (three times so far).
  3. Invest in a mattress cover. Don’t skimp on this. I got one that’s breathable and noiseless. Sheets can be cleaned. Mattresses, not so much.
  4. Have emergency kits on hand in your car and at work (a pre-cut appliance, powder, solvent, whatever you need to make a change). I also have spare underwear hidden in my office.
  5. Follow the doctors’ and nurses’ orders. I know, this should be a no-brainer, but it’s worth repeating.
  6. Be patient. It takes a while to adjust to life with your new friend.
  7. Try a pouch support of some kind. I have a band that I slip into with a built in pouch. Check on line there are several styles out there.
  8. Guys, suspenders are better than belts.
  9. Chew, chew, chew. The stomach is an amazing organ and very efficient at breaking down what you eat. But it can’t do it alone. Avoid “chunks” and chew carefully. Trust me on this.
  10. Share your story with friends and family. My first instinct was to not let people know what I was going through. But, there are more of us than anyone realizes. It doesn’t help to keep it a secret.
  11. Red dye is forever. Before you panic because you think your bag is filling with blood, take a deep breath and think, “what did I eat?” One popsicle or glass of Hawaiian Punch can put a very quick scare into you.
  12. Having stated the above (#9), remember it’s okay to be discreet. I don’t tell everyone I meet that there something different about me.
  13. You are going to learn a lot about how your food is digested. This can be interesting and disturbing at the same time. For example: fish smells like fish going in and coming out.
  14. Try to focus on the positive of your situation. Is your pain from Crohn’s, Ulcerative Colitis, or whatever issue gone? Hemorrhoids cleared up? And I bet you don’t miss having to strain to relieve yourself anymore.
  15. Don’t focus on what’s changed in your life, focus on what’s the same. Get back to your normal routine as quickly as you can and your energy allows. Remember, your life didn’t change – only your plumbing did! 

Don’t get me wrong, I have my moments of despair and depression, too. I have times when I hate that this thing was done to me and that now I’m not “normal.” But, I then focus on why it was done – literally to save my life – and that perhaps I was spared by God for a greater purpose. I just need to figure out what that is.

You know, like everyone should.

Onward!

P.S. – you’ll also get really good at estimating how many milliliters of liquid there are in any container. You know why…