Running with Crohn’s: Returning to training

Running with Crohn’s: Returning to training

Over the last two years, I have undergone four surgical interventions.  I was also actively training for marathons.  This segment deals with how the surgeries affected my training and how I reintroduced myself to running after the doctor cleared me for resuming normal activity.

This brings me to the most important part of this entry:

1)     I am neither a medical professional nor a sports trainer; when I discuss medical issues please remember that I am relaying my experiences as a patient and not as a doctor.  If my experiences / advice ever contradict anything your doctor says, follow the advice of your doctor!

2)     When dealing with medical issues you should tell your doctor that you are runner, tell your doctor about your goals, ask your doctor about when you can resume your training, and ask your doctor if there are any special considerations about running.

When you want to resume high levels of activity after surgery or injury, seek the advice of your doctor!

The procedure for surgery involves a pre-operative appointment, the operation, and a post-operative follow-up.  In the pre-operative appointment, ensure that you inform your doctor about your normal activities.

Things to tell your doctor:

1.     “I am a runner”

2.     The distance you are training to run.

3.     Any other pertinent medical or running information

Things to ask your doctor:

1.     How long do you need to wait after the surgery before resuming your training?

2.     Are there any special considerations that you should know about?

3.     Is it OK to use pain to guide you on your training difficulty?

4.     Is it OK to continue training until the day of your surgery?

If the doctor indicates that running will not harm me or interfere with the surgery, then I keep training until the day of the surgery.

For every minor surgery that I experienced (as of 8/4/2013 that is 7), the doctor permitted me to resume “normal activities” at the post-operative follow-up appointment.  At each of these appointments, I specifically asked, “Is it OK for me to resume running?”

After my major surgery, it took me many *months* to resume my normal level of activity.  My sport of choice at that time was swimming.  Before the surgery, I had been swimming a mile or more during my workouts.  Ten weeks after the surgery, I was permitted to resume swimming.  However, I was only able to swim a single lap on my back, using elementary backstroke, because doing anything else was too painful and difficult.

In my post-op notes, my doctor usually says something like “resume normal activities *as tolerated*”.   The phrase “as tolerated” means as long as it does not hurt.  If it hurts, do not do it!  The few times that I did not feel good during my post-operative runs, I either cut the run short, or replaced running with walking.  The reason for cutting things short is that if you are hurting during the run, there is a good chance that you are harming yourself.  If you are harming yourself, then you are delaying your recovery.  The best thing that you can do for yourself at this point is to heal quickly.

For my most recent surgery, the doctor explicitly told me to *not* use pain as a guide.  He wants me to take it easy regardless of whether activity hurts or not.  His reasoning is that the surgical repair he performed was to glue tissue together.  He is afraid that activity like running & lifting objects could pull the glued tissue apart.  Therefore, I have remained in bed almost 50% of my day since the surgery.  The little activity that I have done has consisted of cleaning our kitchen and grocery shopping.  In addition, I do walk prior to my post-operative follow-up appointment.

The following is an example of my returning to training after surgery:

After surgery (with doctor’s permission):

Day 1: rest

Day 2: minimal slow walk for a short distance or until you feel any changes for the worse

Day 3: rest

Day 4: As long as you do not feel worse than Day 1, another minimal slow walk.

Repeat days 3 & 4, either adding distance or speed *slowly*.  Harming yourself by overdoing it will only slow your recovery.

After getting permission to return to normal activity (usually at your post-operative follow-up appointment):

Day 1: run at your slowest pace 1/4 of the distance of your previous long run (for me that was 2 miles).

Day 2: rest and see how your body responds

Day 3: if you had no problems on Day 2, add distance (for me that was adding a mile).

Repeat Days 2 & 3 until you feel like you have performed the equivalent of your current long-run capability.  Use this as the basis of your current level of fitness and resume your training from this point.  I do not do trail running, hills, speed, or other special workouts until I have a better idea of how my body is responding to the running.  I also do new runs at the slowest pace I can do.  The idea is to get your body used to running again.

During my recovery of the spring of 2012, I was able to use this process to get back up to a long-run distance of 3 miles.  During my recover of the summer of 2013, I was able to use this process to get back up to a long-run distance of 6 miles.  I was at a different state of fitness going into the surgeries of those two years, so the fact that I had different capabilities coming out of the surgeries was no surprise.

Another way of doing this using the C25K training, is to run one work-out from each week of C25K until you feel like you are working as hard as you were when you had to stop running.  When you find a work out that is “hard”, then resume your C25K training from that week.

Running with Crohn’s: Fistula Post-op

Running with Crohn’s: Fistula Post-op

I am once again NOT talking about the drugs I have used so far (although I have started writing that), because I want to slip in this fistula post-op report.

The following contains graphic detail, biological functions, and very personal experiences; some may find it offensive:

I developed a fistula probably around November of 2012.  I did not actually see the doctor about the symptoms because “I wasn’t positive” that I had a fistula.  However, in April of 2013, I exhibited unambiguous symptoms that I had a fistula (blood and pus in my underwear).  Since then I have had three surgeries.

The first surgery just drained the giant abscess that had developed (roughly the size of an extra-large egg).  This allowed most of the infection to drain and the inflammation caused by such a massive infection to recede.  Since it involved cutting, it was a painful experience.  On the other hand, the draining of the abscess relieved a lot of pain caused by it.  On balance, I felt better than I did before the surgery and I bounced back quickly.  By the time the doctor permitted me to resume running, I was extremely eager to return to the running.  However, I took it easy and began by running just two miles.  In the two weeks, I had between this surgery and the next, gradually worked my way back up to running six miles.

In my second surgery, the doctor found the track of the fistula (he was not able to do this in the first surgery because I had such a bad abscess), placed a rubber band like object (called a seton) through the fistula, and irrigated the track to help flush out any infection.  This surgery was even less painful than my first for this fistula.  Do not get me wrong, I was sore; it just was not as bad as I feared it might be.  It took several days after the seton placement for my inflammation around the fistula continued to recede.  Similar to my last surgery, I was able to work my way back up to six miles prior to my third surgery.

I had my last surgery on Wednesday (7/31).  This surgery was the doctor’s first attempt to heal the fistula.  In prior surgeries, the fistula was too infected to attempt to close it.  The doctor removed the seton, irrigated the whole track of the fistula, and then glued the entire fistula track closed with glue (called “fibrin glue”).  My pain upon getting home was (and still is minimal).  I suffer from occasional stinging sensation and general discomfort from having the doctor poke around.  Even though the pain is minimal, I am attempting to restrict my activity.  Too much activity could rip open the glued fistula.  The doctor did permit me to resume running 4-5 days after the surgery, so I plan to perform a trial run on Monday.  I will perform a two-mile run on a half-mile loop so I am no more than ¼ from the car at any time.  Until then, I will take Beth on short walks on the Greenfield walking trail.

This illustration shows several possible fistula tracks.  My first fistula followed the innermost track (just going under the skin but not penetrating any muscle).  My latest fistula follows the transsphincter fistula track which penetrates both muscle groups.  The first type of fistula is easy to heal.  My latest fistula is much more difficult to correct.

For any of you who might require a fistula surgery in the future, I will describe my experiences here.

My surgeries begin with checking into the surgery center (an outpatient surgery facility).  After waiting for a while, the center personnel call me back into a changing area.  After changing into the surgical gown (a typical hospital gown), they have me hop onto a gurney.  It usually takes about an hour of prep to get me ready.  Most of this time they ask me question and fill out forms.  They then place gauze soaked in numbing gel onto my fistula opening (read that as “butt crack”) and put an IV into my arm.  They inject sedation medications as the wheel me into the surgical suite.  The drugs include versed (an amnesiac and anti-anxiety medication), fentanyl (a strong painkiller), and propofol (a hypnotic, or sleep agent).  The procedure usually last 5-15 minutes and it usually takes about 30-45 minutes for me to recover sufficiently to walk out of the surgery center.  My perception of the time is that I wake up about 30 seconds after being injected with the sedation medicine.

While I am unconscious, the doctor injects a nerve block to numb my rectum and urinary track completely.  The numbness can last for many hours (up to 12 for me on one occasion).  It obviously helps with surgical and post-surgical pain but can also cause unpleasant side effects.  One that the doctor has warned me about but I have never experienced is the inability to urinate (I have not had any problems urinating).  A side effect the doctor did not warn me about but I have experienced is incontinence.  After my second surgery, I experienced severe abdominal cramping and pressure.  I tried to hold this as I slowly made my way to the restroom and thought I had succeeded, however, when I got onto the toilet I discovered I had failed :( .  After recovering feeling, I regained control of bowel movements.

Upon waking from surgery, I usually feel a bit wobbly.  On the day of surgery I make a point of taking the maximum prescribed dose of pain medicine until I get a better idea of how much pain I will be in.  Usually on the second day I begin weaning myself off of the prescription pain killers.  With these three surgeries that meant using only 1/2 of the pain pills.

Running with Crohn’s: What is Crohn’s Disease?

Running with Crohn’s Disease: What is Crohn’s Disease?

Contrary to my indications in my last entry, I elected to provide a short description of Crohn’s Disease for people who are unfamiliar with it.

Crohn’s Disease is an autoimmune disorder in which the body attacks its digestive tract.  The net result is ulcer like lesions that can occur anywhere in the digestive tract.  For me specifically, I have inflammation in my terminal ileum, which the tail end of the small intestine where it attaches to the large intestine.

IBD requires a variety of factors to start

The direct symptoms from which I suffer include anemia, abdominal cramping, night sweats, and diarrhea.  However, people with Crohn’s possess an increased chance of suffering from a variety of other issues.  I do not know the total list of these secondary issues, but I suffer from several of them.  These include kidney stones, fistulas and small bowel obstructions.

Small bowel obstructions feel like being stabbed in the intestines repeatedly with knives.  I have had obstructions for as little as a few hours and as long as 5 days.  In every instance, my body has cleared the obstruction naturally (through particularly nasty and long bouts of diarrhea and vomiting).  I experience the small bowel obstructions when I eat too much fiber particularly when I forget to chew carefully enough.  This means that I eat far less fiber than I should.  Of course eating very little fiber exacerbates my diarrhea problems.  Even so, I suffer from bowel obstructions from two-six times per year.

So far, I have suffered from two kidney stones.  The last one occurred in the spring of 2012 during the training for my first marathon.  I suffered from the first one in 2007.  My kidney stones presented differently.  My first one presented as blood in my urine, in fact, it actually turned my urine completely red.  My second stone presented as moderately severe back pain.  In both cases, I experienced severe pain during some point of the process (that was probably stone passing through my ureter).  The first stone passed with no intervention.  With the second stone, after two weeks, I contracted a fever of 102 F and they removed it surgically with “the Claw!”  This set me back by four to six weeks in my marathon training.

The following contains graphic details, biological functions, and very personal experiences:

I have suffered from three fistulas so far.  My first fistula happened about eight years ago in 2004.  It presented as a PITA (literally), swelling and tenderness near my rectum, and a systemic sense unwellness (as if I had an infection – which I did).  Ultimately, I had a very sharp pain near my rectum and a feeling of “gushing.”  What had happened is the fistula had “burst” open and left pus and blood in my underwear.  It took two surgeries to correct it.  The second fistula was not nearly as dramatic but just presented as blood and pus every time I had a bowel movement and required just a single surgery to fix.  The third fistula presented similar to the second fistula, however, I let this go on for nearly 6 months before I had a feeling of “bursting” with blood and pus left behind (nice pun, eh?) without a bowel movement. So far, it has required three surgeries (and might take more).  These surgeries interrupted the training for my second marathon and set me back many months.  Today (8/1/13), I have abandoned my goal of running my second marathon on 9/21/13, especially since I can only run about 6-10 miles right now. 

The worst part about diarrhea symptoms that I suffer from is its unpredictability.  I never know when I will suffer severe abdominal cramping and immense pressure in my bowels.  Having a bowel movement *usually* relieves this cramping and pressure (but not always).  So far, I have always been able to “hold” these bowel movements until able to get to a toilet.  It comes with a cost though.  I have to concentrate and squeeze quite hard to hold it in AND it usually hurts a lot.  I do have to say that I know I will need to have a bowel movement within 30 minutes of eating a large meal, however, this only accounts for about half the bowel movements that I have in a day.  I do not know how to predict the other times I need to go.

Similarly, my night-sweats are not easy to predict.  I get these two to six times a month.  My typical night sweat includes awaking in the middle of the night soaking wet – to the point of soaking any clothing I am wearing, soaking my sheets, and requiring a towel to dry.  In addition, I feel very cold.  I deal with this by wearing cotton clothing to bed.  When I awake soaking wet, I strip off the cotton clothes and go back to sleep in my underwear.

The intestinal cramping has been the easiest thing to deal with.  My earliest (and best) GI doctor prescribed both Levsin (Hyoscyamine) and Bentyl (Dicyclomine).  These work very well for me.  Bentyl works better but makes me drowsy.  Therefore, I use Levsin when I need to be alert but otherwise I use the Bentyl.

As I promised in my last entry, I will discuss the drugs I use in my next blog.

Running with Crohn's Disease

This series of blogs may discuss topics not normally discussed in polite conversation.  This includes parts of the digestive tract and intimate details of surgeries.
 

You have been warned

At the urging of my wife (her blog here: http://b3lifeonmentalpause.blogspot.com/2013/07/holy-testosterone-batman.html), I will share a bit about my experiences with both Crohn's Disease and athletics (and running in particular).

In today's blog, I will provide a short Crohn's biography.

In 1990, I went to donate blood.  The Red Cross performed a blood screen and rejected me as a donor.  They told me to go see my doctor as soon as possible but they refused to tell me why.

At my doctor's office, I found that I was very anemic (hemoglobin around 10.5 gm/dl).  With a few other tests (fecal occult blood test), my GP doctor discovered that I had blood in my stool and he referred me to a GI specialist.

Unfortunately for me, I discovered this a few weeks prior to my planned wedding date.  The GI doctor began a series of tests that took more than a week to complete.  Each test turned up no results, meaning they found no evidence of bleeding in my GI tract.  With only 4 days left before my wedding, the doctors told me that if the colonoscopy did not show where I was bleeding, then they would have to perform exploratory surgery and it would have to be performed before the wedding!

Luckily, my GI doctor was very skilled and able to work the scope several inches into my terminal ileum and find the site of my Crohn's Disease.

My initial treatment was prednisone, sulfasalazine, and iron.  Prednisone worked wonders and cleared up my symptoms.  It acted like a wonder drug.  It increased my energy levels, stopped the bleeding, and stopped my abdominal cramping.

For the next 8 years, I bounced between needing and not needing prednisone to control my Crohn's symptoms.  Over this time, my Crohn's symptoms worsened, prednisone became less effective, and I started suffering severe negative side effects from the steroids.

In late 1998, my company sent me on a business trip.  During the trip, I began bleeding heavily into my intestines.  So heavily that I had severe diarrhea that was completely black from the digested blood.  While at work the next day, my co-workers mentioned that I was extremely pale and looked “very bad.”  Therefore, I went to an emergency room for evaluation.  They performed a blood test and found my hemoglobin was about 6 gm/dl.  Since I normally run 16+ gm / dl, it meant that I had lost almost 2/3 of my blood in 2 days.  The hospital admitted me.

The next 6 days included conflicting orders by different groups of specialists, multiple blood transfusions, blood tests performed every 4 hours, and not being permitted to eat (the thinking was that food moving through the intestines might abrade any clots keeping me from bleeding).  I will write up the details of this hospital stay as another post as I think there are important lessons that I should share with others who might experience similar problems.

Ultimately, the doctors performed a small bowel resection and removed 14 inches of the terminal ileum affected by my Crohn’s Disease.

That operation significantly lessened my major symptoms and they are still (July of 2013) mostly under control.  I experience very little cramping, little or no blood loss, few night sweats (just 2-4 per month now).  However, I still suffer from severe diarrhea, meaning on a good day I only need to go to the restroom 2-4 times.  On a bad day, I may need to defecate eight or more times per day.

Since 1998, my Crohn’s Disease has:
Triggered two kidney stones (2007 & 2012), the second of which had to be surgically removed.

Triggered three fistulas (2004, 2008, & 2013).  My first fistula required two surgeries.  The first placed a seton.  The second removed the seton and cut open the fistula track.  This entailed an *extremely* painful recovery.  The second surgery simply required gluing the top end of the fistula shut, after which I healed with very little pain.

This brings me to the current date (7/31/2013).  Today I will have the third surgery for my third fistula.  The first two surgeries for this fistula were not that painful (cutting and draining an abscess that formed from the fistula and a seton placement).  Today’s surgery has a low probability of success; however, this approach has no negative consequences.  If it fails, it does not prevent the doctor from attempting other possible approaches.  The more radical surgeries are more likely to success, however, if they fail then they cannot try other approaches and it could cause incontinence.

In my next post, I will discuss some aspects of running with Crohn’s Disease and in the one that follows that, I will discuss the various Crohn’s medications and treatments and how they have affected my athletics and me.