Running with Crohn’s: It’s a guy thing IV

I had my follow-up appointment with my urologist at the end of last week regarding my elevated and rapidly increasing PSA (prostate specific antigen).  Although he seemed open to the idea that my rapidly increasing PSA could have been caused by the fistula (and infection) and accompanying surgeries (and trauma to the prostate), he did not seem very confident that it was the cause.

His recommendations were to get retested in 1-2 months and if the PSA had not dropped, then I would get another prostate biopsy in about 3 months.  In the meantime, he felt it was worthwhile to try a round of ciprofloxacin (a strong antibiotic with activity in the prostate).  If an infection of the prostate contributed to my high PSA numbers, then this treatment should reduce my PSA numbers.  He stated that if this reduced my PSA numbers significantly, then he would not order the prostate biopsy.

Therefore, I am currently going through a 21 day round of antibiotic treatment and I am taking my antibiotic very religiously.  I also have my calendar set to explicitly not have sex prior to my next PSA blood test (also a possible factor in an elevated PSA reading).

I do NOT want another prostate biopsy if I can avoid it.

Running with Crohn’s: Blood clots

Many people suffer from blood clots (aka thrombosis), however, like many of the other issues that I’ve written about if you suffer from IBD, you are more likely to experience these than normal, healthy people.  To make matters worse, runners (and other athletes) suffer from clots more frequently than normal healthy people.  If you run and have IBS this is a condition that you need to be looking for.

Thrombosis in Crohn's patients

Runners are more susceptible to clots in their legs.

I experienced two of these but both of them occurred in the late 1990s at a time that my daily commute was an hour or more each way. 

If you think you have a blood clot, seek medical attention immediately!  Deep Vein Blood clots (called deep vein thrombosis – DVT) are an immediately life threatening condition!

Both of my blood clots were in my legs and both were in “superficial” veins.  Blood clots in your deep veins are much more worrisome than those in the superficial veins.  Regardless of where you think your blood clot resides, you should seek medical attention if you suspect one.

Symptoms

Both of my blood clots presented as pain, swelling, numbness, and stiffness in my lower leg.

In one case, the clot occurred in my calf and the site looked extremely bruised.  Since I almost never get bruises, my discovery of a baseball sized bruise on my calf along with the stiffness, swelling, and pain in my leg caused me to seek medical attention.

My first blood clot looked like this - a bruise and swelling in my calf

In the other case, I didn’t see any sign of bruising around the area with pain and swelling.  However, since the rest of the symptoms mimicked those of my earlier clot, I sought medical attention again.

My symptoms:

• Swelling
• Pain
• Stiffness
• Warm skin
• Bruise (in only one case)

I never discovered whether the bruise caused the clot or the clot caused the bruise.

The Mayo Clinic lists additional symptoms of thrombosis

The Mayo clinic states that about half of blood clots sufferers (even those suffering from deep vein clots) do not observe symptoms.

Diagnosis

The two types of clots are “superficial” and “deep vein”.  Since the deep veins are larger, doctors worry much more about clots in those veins.  In both of my blood clot cases, my doctor directed me to get an ultrasound of the affected site.  The ultrasound revealed in both cases that my clot occurred in a “superficial vein” (the first one in my calf, the second in my knee).

Other tests are available (including blood tests, MRI, and CT scans).  Of these the blood tests can only show whether you have a clot and not where the clot is located (e.g. superficial or deep vein)

Concerns

In most cases, the clot in your arm or leg does not concern your physician.  It is the possibility that the clot will break loose and lodge in your heart, brain, lungs, or other critical location that concerns them. 

If you suspect you have a blood clot, regardless of how you feel, you should seek medical attention immediately.

Treatment

Once my doctors discovered that my blood clots were in superficial veins, they never expressed much concern about them.  They asked me to monitor them while the symptoms persisted and report to the doctor when the symptoms resolved.  In both cases for me, the symptoms lasted a couple of days and disappeared spontaneously.

If you suffer from the more severe deep vein clots, then expect your medical professionals to monitor your condition more closely.  Furthermore, they will likely administer one or more blood thinners to help break up the clot and prevent your blood from reclotting.  Follow your doctors advice closely as deep vein clots are immediately life threatening and the treatments for resolving them also possess potentially life threatening side-effects.

Prevention

Many aspects of my life increase the likelihood of developing blood clots.  These include:

• Long commutes
• Long airplane flights
• Dehydration (from running and from diarrhea)
• Long periods of sitting at the office
• Chronic bleeding
• High concentrations of hemoglobin when healthy

One aspect of me preventing blood clots is to reduce those factors.

• When I am sitting (at the office, on a plane or in my car), I now frequently flex my legs to help prevent the blood from pooling.  I try to stand and walk around at least once per hour.
• When commuting on a road with rest areas, this often means stopping at every rest area for a short walk.
• When I’m on a plane, it means getting up and walking back to the bathroom whether I need to use it or not.
• When I’m on a plane, I always accept complimentary drinks.  Since my recent reading indicates that orange juice is better at preventing clots than water, I take orange juice.
• When I’ll be flying, I always bring a bottle of water (for hydration) and drink water whether I’m thirsty or not.
• When I’m running, I always hydrate before a run and I always hydrate when running for 30 minutes or more.
• I sometimes take a baby aspirin to help, however, I have a history of GI tract bleeding and I frequently take ibuprofen so I do not take an 81 mg aspirin all that often (speak to your doctor about this before starting).

Running with Crohn’s: Anemia

Over my history of Crohn’s disease, I’ve dealt with mild, moderate, and severe anemia.  In my early years with Crohn’s Disease, I never suspected anemia as the cause of chronic fatigue – even when the fatigue was severe and I knew I was bleeding.  I always attributed it my small children, long workdays, and lack of sleep.

Symptoms

When the anemia was severe, I couldn’t stand for more than a few minutes without getting a splitting headache.  I often felt faint or weak when I stood up suddenly and I still didn’t suspect anemia as the reason.

Ironically I sometimes feel anemic even when I haven’t noticed signs of bleeding in my stool.  At other times, I find frequent signs of bleeding in my stool and don’t feel anemic.  So if you discover blood in your stool (or you have very dark stools), you should ask your doctor to test you for both anemia and “fecal occult blood” (blood hidden in your stool).

These are the symptoms that I experience with bleeding and anemia:

• Red or black stools (or something in between)
• Extremely pale appearance
• The whites of your eyes look abnormally white
• Low capillary refresh rate - press on the pink portion of your fingernail enough to turn it white.  Observe how fast the nail returns to pink when you release it.
• (for me) standing gave me headaches
• (for me) Just standing tired me out
• (for me on more than one occasion with severe anemia) taking a hot shower made me pass out
• If you’ve been running for a while, anemia will cause you to experience higher than normal heart rate for the same workout

Here's a list of symptoms provided by WebMD that covers anemia due to conditions other than intestinal bleeding.

If you think you are anemic, seek medical attention.  Severe anemia can be live threatening.  Furthermore, it is essential that you discover the reason for your anemia and correct it.

Treatment

Mild to moderate Anemia

If you suffer from mild to moderate anemia, your doctor will prescribe iron supplements.  I have experience problems with iron supplements especially the very cheap iron sulfate supplements.  They can cause severe cramping and will usually turn your stool black.  If you sometimes experience constipation, you should take these with care because they can also cause severe constipation (this last side-effect has never caused me trouble).

Before following my advice, please check with your doctor.

I have four recommendations for iron supplements:

1. Take them with food
2. Take them with nutrient supplements that help with its absorption
3. Take more easily digested iron compounds
4. Split the dosage between evening and morning meals

The first recommendation is self-explanatory.

The second recommendation

The three nutrients / vitamins I used to help with iron absorption were vitamin B-12, vitamin C, and Folic acid.  Some iron supplements include one or more of these with the iron supplement but I found these combination supplements to cost much more than the nutrients supplied separately.  Therefore, I regularly took all of these at the same time (one of each or a multivitamin with an iron supplement).  I found that adding these nutrients not only increased my iron absorption (judged by the color of my stool after taking the supplements) but also by the amount and severity of side-effects like cramping that I suffered after taking the iron supplement.

If you do it for no other reason, take these supplements to reduce the cramping.

Note that due to the damage Crohn's Disease has caused my intestines and my small bowel resection, my body no longer can absorb a sufficient amount of vitamin B-12 through the intestines.  Therefore, I have to take all of my vitamin B-12 through a subcutaneous (under the skin) injection that I give myself once a month.

The third recommendation

I only recall taking three different supplement types: iron sulfate, iron gluconate, and iron fumerate.  Of these, I suffered the least side effects with iron fumerate and the most with iron sulfate.  My recollection is that iron fumerate (in combination with vitamin C) was much more expensive (say $30 / bottle) than iron sulfate ($2-4 / bottle).  I felt like I absorbed the iron fumerate better but that was a very subjective observation based upon the color of my stool.  I had fewer side-effects with iron gluconate than iron sulfate and the price was much more reasonable than iron fumerate.

My last recommendation

When I took the iron dosage recommended by my doctor, I almost always suffered cramping from the iron supplements.  When I cut the iron supplement dosage in half, I often did not experience cramping.  So I split my daily dose in half and took it twice a day.  Alternatively you can take a time release version of the supplement but these usually cost a fair amount more.

Severe Anemia

When you suffer severe blood loss or have very low hemoglobin counts, your doctor will recommend or direct you to get a blood transfusion.  In my case, all of my transfusions occurred in a hospital.  I do not know whether the medical establishment gives transfusions on an outpatient basis.

During one of my transfusions of 3 units of blood, I experienced an allergic reaction that required prompt medical attention (intravenous Benadryl).  It appears that allergic reactions due to blood transfusions are not uncommon. So I suspect that the possible negative side-effects to a transfusion require that it be done in a medical facility that can supply.

During my hospital stay, the hospital administered 3 units of red blood cells when my hemoglobin levels fell below 6 g/dl (~16 g/dl represents my normal healthy concentration of hemoglobin).  Similarly my doctors never suggested getting a blood transfer for hemoglobin levels above 6 g /dl.  I can only assume that they used oxygen saturation levels as their guideline and that my body was able to maintain adequate oxygen saturation after having lost 10 or more units of blood.

The US government guidelines indicate that a level of 9 g/dl is normally recommended for adequate oxygenation.

Staying active

I had not started running when I was chronically anemic.  However, I was participating in a variety of physical activities.  As you might expect the anemia made it much more difficult to do most physical activities.

While anemic I participated in master’s soccer and swam.  When I was aware of my anemia, I essentially understood that the purpose of my exercise (mostly swimming) was simply to rebuild my body after it had been ravished by extreme anemia and a major surgery.  I did NOT attempt any new swimming activities, speeds, distances, races, or anything else.  In fact, my first attempts involved simply trying to swim elementary backstroke for one lap of the pool (this was after being a competitive swimmer used to swimming two miles in a work out).

If you attempt to remain active with anemia, you must factor your anemia into your expectations.  You will NOT be able to run as long or hard as you could when not anemic.  Do not distress over this.  You are training under adversity.  In the long run, this will help you achieve running goals by forcing your body to work with less oxygen; it will actually improve your body’s use of oxygen.  When you recover from your anemia, it ought to make you a better athlete (similar to exercising at high altitude).

Running with Crohn’s: Bleeding

Anemia and bleeding are not unique to Crohn’s Disease, however, people who suffer from inflammatory bowel disease often suffer from intestinal bleeding and anemia.

I haven’t suffered from anemia in many years, perhaps as many as ten.  However, I spent the 13 years before these last 10 years suffering from chronic anemia caused by slow (or sometimes very fast) bleeding.  Since then, I have occasionally suffered from bleeding but it has been slight compared to what I used to experience and it hasn’t caused anemia.

Sometimes it isn’t always easy to tell when I’m bleeding.

When I bleed a lot from Crohn’s damage to my intestines, the bleeding occurs in my small bowel and my stool is often black.  When I bleed from fistula damage, it is always red and usually it is bright red.  However, sometimes when I bleed from my Crohn’s and have severe diarrhea, the stool is dull red, black with red tints, or very dark brown.  Sometimes the color of my stool is very dark but not black or red and I can’t really tell whether I’m bleeding or not.  The only way to tell with certainty is to get your stool tested.

Having spent over a decade bleeding on and off from my disease, I’ve come to the conclusion that the color of my stool, in regards to bleeding from Crohn’s disease, depends upon the amount of time the blood spends in my intestines.  The longer the blood remains in the intestines, the more it turns the stool black rather than red.  Blood coming from the very end of my intestines (like from my fistula) is always red.  Sometimes it’s bright red and sometimes it’s dark red but it is always red.

For more information about what the color of your stool might mean, read my early entry "Everything comes down to poo."

In 1998, I suffered from a very serious bout of bleeding.  Ultimately, the doctors determined that the Crohn’s ulceration had worked into an artery running along my intestines.  In a few days, I went from hemoglobin of 16 g/dl to 6 g/dl.  Over several more days, I received many tests and seven units of blood in transfusion.  After finally finding the source of the bleeding (and three more units of blood), an emergency small bowel resection fixed my bleeding problems by removing the Crohn's Disease afflicted section of the intestines.  It took me nearly 3 months to recover from the surgery and blood loss.  Ironically, suffers of Crohn's Disease redevelop the Crohn's ulcerations at the resection point of the intestines - and I am no exception.  Colonoscopies subsequent to my surgery revealed that my Crohn's is back and just about as severe as it was prior to the surgery.

For me, fistula bleeding also contains a discharge that either looks like (or probably is) pus or mucus mixed with the blood.  I usually get this bleeding during bowel movements.  When I have had bad infections with the fistula, I also sometimes get large “discharges” of pus and blood that I can actually feel coming out.  Other times (like now) the discharge is gradual and produces no real feeling.  My body has never experienced trouble with maintaining my hemoglobin levels due to the bleeding associated with my fistula.

If you suspect blood in your stool (or you have very dark stools), you should ask your doctor to test you for both anemia and “fecal occult blood” (blood hidden in your stool).