Diary of a Crohn's Flare: Slept through the night!

With the pain and diarrhea I regularly suffer from, it has been uncommon for me to sleep through the night and sleeping through the night has been a cause for celebration (as well as causing me to feel much better through the day).

Since I developed my second abscess (diagnosed on 6/8), the frequency of me sleeping through the night has decreased dramatically.  Most nights I've been awoken at least once each night due to pain AND once due to diarrhea (needing to use the restroom).  It has not been uncommon for me to awaken more than once for each of these reasons.

Since my surgery on 8/11 I have not slept more than about 3 consecutive hours at a time and on some nights have gotten as little as 2 hours of sleep.  For instance, on the evening of 8/28, I only got 4 hours of sleep (I had two stretches of 2 hours of sleep).  In between sleeping, I've either been in too much surgical pain to sleep or my intestinal cramping and diarrhea has kept me on the toilet.

However, last night I got to bed at 11 pm (when I took my last pain pill of 8/29) and I slept continuously until 5:50 am (at which time, I had to use the toilet and did not require pain medication).  This meant that I got more sleep in one night then I've had since surgery, I also had the longest continuous stretch of sleep for a long time (probably more than a couple of months), AND it also means I went 7 hours with no pain medication (I'm not certain this is the longest stretch I've gone since surgery but it is certainly within the top two).

I did take pain medication at 6:00 am because the debrided wound was feeling raw but my pain levels were manageable, probably a 3-4 on my pain scale.  The pain medication reduced my discomfort but this morning I'm still not comfortable.  I plan to take another pill at 10 am to see if I can make myself comfortable.

Diary of a Crohn's Flare: Full Diet!

Yesterday (Friday 8/29) my surgeon promoted me to a "Full Diet."  Many people would be excited to resume eating anything they wanted after almost 3 weeks of various level of restricted diets.  However, for me this is an event of extreme significance.

Over the years since my previous surgery, I had developed strictures in my intestines.  High fiber foods caused many problems ranging from intense and painful intestinal cramping, feelings of fullness, bloating, gas, diarrhea, and (probably) progressing to fistulas and intestinal abscess.

Over the last 5 or more years, I have carefully monitored which foods seemed to cause more problems and I've carefully eliminated these things from my diet.  This has caused me to exclude foods I love (like popcorn) due to the problems they've caused.  Over the last year or so, my Crohn's has gotten much worse and I've been forced to be far more careful with what I've eaten.  Over the last 6 months I've restricted myself to a low fiber/low residue diet.

Low Residue Diet (foods that I love but could no longer eat)

• Whole grain foods
• Strong cheeses
• Raw vegetables
• Tough meat, meat with gristle
• Peanut butter
• Dried fruits, berries, other fruits with skin or seeds
• Chocolate with cocoa powder
• Food containing whole coconut
• Juices with pulp
• Highly spiced food and dressings, pepper, hot sauces
• Coffee and other foods with caffeine
• Popcorn
• Nuts and Seeds

Plus my surgeon explicitly warned me to not eat sushi for a variety of reasons (the seaweed wrap, concerns about immune system, etc.).

Upon my promotion to a full diet yesterday, I elected to eat several items on this list but only a little bit of each one to ensure that I don't shock my digestive system.  In the last day, I've eaten these things:

• Popcorn
• Pistachios
• Orange juice
• Peanut butter
• Whole grain bread
• A sushi roll (Phoenix is my favorite :) )

Today I'm going to eat:

• Sweet corn on the cob
• Spicy foods
• Peaches (with  their skins!)

I'm very excited!

But even though my gut may be able to mechanically process these foods now, I still intend to introduce the foods gradually.  I'm concerned that my gut fauna are not prepared to digest the higher fiber foods.  To help with this, I intend to take some pro-biotic foods on the days I intend to expand my diet.

Diary of a Crohn's Flare: Wound Debridement

When I last wrote, I mentioned that I had developed a second infection of my surgical incision which we discovered on 8/26.  My surgeon changed the treatment plan from a wound vacuum to using a twice daily wet-dry dressing and changing it twice a day.

Regardless of the dressing and treatment used on the wound.  Each dressing change starts by cleaning the wound with sterile saline and gauze sponges.  The wound nurses swabbed the wound and ensured that all exudate and loose tissue was sponged off the wound.  They then blotted the area dry in preparation for the application of the dressing.


Wound Vacuum (aka negative pressure therapy)
This consists of a porous material which fills the wound.  An air-tight sealing tape fastened a suction device to  the porous material (in my case an open-celled foam) and the surrounding skin.  This allowed a machine to provide suction to the wound and extract any wound exudate/drainage.

Until 8/25, the quantity of drainage extracted by the wound pump from my wound was small.  Over the evening of 8/25 through 8/26 the wound pump extracted the equivalent of a weeks worth of wound exudate.  On the morning of 8/26, the drainage had turned milky or tan in color (purulent exudate) which strongly indicated the wound was infected again.

Wet-Dry Dressing

The dressing consists of gauze (they usually use 1-2 4x4 gauze pads on my wound) moistened with sterile saline solution applied directly to the wound.  They cover the wound and "wet" gauze with a sterile dry dressing (they use ABD pads on my wound - I assume "ABD" stands for "abdominal").
The principal is that the moistened gauze will wick any wound exudate/drainage out of the wound and into the dry ABD pad.  In my case, the exudate from 8/26 looked like purulent (likely an infection), that of 8/27 appeared seropurulent type (suggests an infection), while later it appeared of the serous type (indicates normal wound healing).


Surgeon's Visit
Because my wound's symptoms strongly suggested that I had developed another surgical infection, my surgeon scheduled me to visit on 8/29.  Because of the possible seriousness of the second wound infection, my surgeon instructed me to prepare for out-patient surgery.  This meant that I stopped taking anything by mouth (PRN) after midnight on Thursday in preparation for general anesthesia/sedation and to ensure that I had someone to drive me home.  As of Wednesday of this week and due to the condition of the wound, I convinced myself that I was going to get minor surgery.

Luckily for me, the signs of infection in the wound cleared up and by the time I visited my surgeon, the wound looked healthy again.

During this visit he declared that I was promoted to a "full" diet - meaning I can eat anything that I want :)  He also noticed some unhealthy tissue (left over from the infection?) and elected to "debride" my surgical wound.

Wound Debridement 
The purpose of wound debridement is to remove unhealthy, necrotic (dead), and/or infected tissue so that only healthy tissue remains.  In most cases, this significantly increases the rate of healing.  There are many methods of removing this tissue.  In my case, the surgeon mechanically scraped the tissue out of the wound using the back-end of a surgical applicator (it looks like a q-tip with cotton swab on the front-side and a wooden stick on the back-side).

The process took several minutes and the surgeon asked my wife to watch (did he want her to do this to me later in the healing process?).  He scraped the tissue until he removed all of the unhealthy tissue and induced minor bleeding. 

In my case, I kept my eyes shut through the process.  The reason for this: I had no pain medication from midnight the night before the procedure (over 9 hours), so I was already in moderate pain (about 4-5 on my pain scale).  The debridement process, in my case, was uncomfortable but did not induce lots of extra pain.  However, when the process was complete and I was able to take some pain medication, I did so as soon as possible :)

A day later the whole area still feels a little raw and is somewhat more painful.

All in all, my recovery from this surgery continues at a pace much faster than my previous surgery.  Three weeks after the surgery my mobility, pain, and flexibility are all very much better than they had been after that surgery.

Hospital Bed to 5K: Second Week

Unlike the couch to 5K or other training programs, my recovery from surgery doesn't include a well defined work out plan.

When I feel good (my surgical pain is under control), I get up and do things.  When I'm feeling especially well, I accompany my family members (who drive) to the store and walk through the aisles with them.

I don't know the distances I walk (although I should ask my wife to map my run, lol), but I suspect the total distance walked is a 1/4 mile or more for each trip.  What I've noticed is that when I increase my activity, I generally experience increased pain later in the day.  Sometimes the increased pain is enough that I take an extra pain pill.  Usually, it just makes me more uncomfortable and less willing to move around in the house.

The benefits of keeping active include medical things like lower chances of developing blood clots in the legs (I am at increased risk for this), lower chances of developing pneumonia (I suspect my compromised immune system leaves me at increased risk for this too), and lower chances of developing bed sores from sitting and sleeping on the same pressure points on my back, bottom, and legs.

Keeping active also improves the rate of healing of the wound.

For the record, my second week of activity included about 6 trips including trips to the grocery store, library, and doctor's offices.  The distance walked for each trip equaled about 1/2 mile each.  Total distance for the week 3 miles or so plus incident movement around the house.

Diary of a Crohn's Flare: Gas, Bloating, and Cramps

Since my abdominal surgery I have experienced a variety of different feelings and pains.  One of these has been intestinal gas, increased diarrhea, abdominal bloating, severe cramps, and pain from those cramps.  The pain from this gas cramping often exceeded the pain of the incision!

I did not understand what might have been causing the gas, diarrhea, and cramping but eventually I remembered that Ensure nutritional shakes had induced intestinal gas in me on previous occasions.  So I tried cutting the Ensure out of my post-surgical diet and my gas cramping and most other related symptoms (especially the pain) decreased by 80% or more.

Because I have no known milk allergy or sensitivities, this puzzled me until I carefully read through the ingredients of Ensure.  Ensure includes soy oil and soy protein.  I have no known soy allergy, I suspect that I could have a soy sensitivity.  Alternatively, since I do not eat soy products very often, my gut biota might not be able to easily break down soy oil and protein.

Regardless of the reason, the elimination of Ensure from my diet really helped me.  If you are suffering from these sorts of symptoms, try eliminating foods that are not part of your normal diet.  There's a reasonable chance that foods new to your diet could be causing the problems.  Sometimes these foods are hidden within a product you've added (such as when I added Ensure to my diet).

Hospital Bed to 5K: First week

The day after surgery, my nurse came in and told me it was time to "get up and walk around."  I was in pain but doing OK, so I got up and moved to the chair in the room.  While I was there, the nurse informed me that they wanted me to walk around that wing of the hospital (each lap was about 180 yards ~0.1 mile) later that day.  I told her that I was already up so that we should just get going.


For that first walk, I walked just a single lap of the wing.  They asked me to try to walk at least three times per day, so that was my "training schedule."  I timed my walks to occur long enough after taking pain medications that I wasn't too woozy but no so long that I lost the pain killing effects.  I kept that going for most of my stay in the hospital - trying to do something to keep active (move to chair, use the toilet, or walk some laps) after taking pain medications.

While in the hospital after my recent surgery, I came to the realization that other than the pain of surgery, I felt GREAT.  Perhaps the best I've felt in two or more years.  Of course part of this may have been the mild euphoric feeling some pain medications instill, however, I firmly believe a significant portion of feeling better was the removal of all of my inflamed (and diseased) intestinal tissue.

It means that as my incision and wound heal, I should be able to resume my running training.  This training started with the requests by the nurse to move around after surgery.  When I get permission from my doctor to resume light walking (I'm hoping to get that permission on 9/3), then I'll start walking greater distances.  On or around 9/17, I hope to get permission to resume light running and perhaps do a little light weight lifting (strictly for muscle tone and not to build bulk).

Since my first walk in the hospital, I have walked at least 3 times per day and most of those laps were more than one lap.  Since getting home, I have spent some of each day walking around (literally in the grocery store these last two days), to get some additional mileage.

I'll blog about my progress as I move from a hospital bed to my first post-surgical 5K.  I do plan to run another marathon before the end of 2015, however, I haven't selected the race yet.

For the record, the distances I walked during my first week of recovery:
Starting the day after surgery I walked around the wing at least 3 times each day (often I did more).  For each walking adventure I always walked at least one lap and sometimes walked as much as 4-5 laps per trip (I believe I averaged about 2.5 laps per trip).  Each lap was about 190 yards.

Average distance traveled per day =  0.8 miles
Total distance traveled in the first week (6 days of walking) = 4.8 miles

Thought of the day: Envy versus Inspiration

Amyotrophic lateral sclerosis ("ALS" also known as Lou Gehrig's Disease) is a devastating, debilitating, painful, and eventually deadly disease (ALS Symptoms).  The muscles of patients with ALS atrophy while their mind remain completely intact.  People diagnosed with ALS typically live for about 2-5 years.

Recently in fund raising circles the ALS Ice Bucket Challenge has taken the country by storm.  This fund raising activity has raised more than $20 Million for ALS research and support of families dealing with ALS.  The money generated by the ALS Ice Bucket Challenge does, in part, go to help defray the costs of caring for people suffering from ALS.

Since patients with ALS eventually lose control of all muscles (including involuntary ones involved in breathing, digestion, and heart beat), the cost of care for ALS patients becomes exorbitant.

ENVY

I tell you all of this because lately I've noticed a backlash by some people against the popularity of this fund raiser.  Mostly the backlash comes from people with loved ones suffering from other potentially fatal diseases (including addiction, mental disorders, and other conditions).  Their thinking is that this attention and funding is disproportionate to the number of people affected by ALS.

The comments and blog entries I've seen on this are extremely negative of ALS and the Ice Bucket challenge, the people making the entries are infuriated that so much attention has been paid to this (seemingly unworthy) cause.

INSPIRATION
I find this envy to be a terrible, negative, and destructive emotion.  Rather than allowing your rage at the "unfairness" of one rare disease receiving attention disproportionate to its affect on the population, use these wonderful results as an inspiration for what could be done for other rare diseases.

Do not look at the popularity of this fund raiser as a reason to hate & envy, use it as inspiration.  Through your energies in trying to replicate the success of this drive for your own favorite cause / charity.  There's no reason there cannot be another wildly successful fund raiser next year to raise awareness of (for example) substance abuse.

On a side note:

There have always been celebrity diseases (AIDS receives disproportionately large federal funding) that receive funding way out of proportion to how the disease affects people's lives.  Similarly there have always been orphan diseases that do not receive funding anywhere close to being representative of the disease's impact on the population (Disproportionate funding levels hampers Alzheimer's disease research).  The lack of attention paid to an orphaned disease should never be used to detract from the attention and funding paid to these other conditions.  Although I personally think an objective measure should be created and used to allocate public funds towards researching these diseases.

To allocation public funds, an objective measure should be used for allocating funding, something like Disability Adjusted Life Years (DALYs).  It is a measure of overall Disease Burden, expressed as the number of years lost due to ill-health, disability or early death.

Additionally, for private funding of diseases I think no one should be criticized for donating to any cause.  Charitable donations to worthy causes should be celebrated.  I recommend verifying that charitable organizations spend your donations wisely.  You can use web sites like Charity Navigator to evaluate the quality of charitable organization.  It provides a graphic showing how your charity rates (chart shown for the National Organization for Rare Diseases):

Inflammatory Bowel Disease (IBD which consists of Crohn's Disease, Colitis, and a couple of much rarer rare diseases) is considered a "rare" disease (and both are listed in the National Organization of Rare Diseases: NORD: Crohn's Disease).  Although CD rarely kills its sufferers directly, I have now twice come very close to death due to side-effects and complications caused by this disease.  Despite modern and more effect treatments, it is likely that CD (and its complication) will shorten my life and will certainly degrade my quality of life substantially.

*I* do not begrudge the attention and funds flowing into ALS from this Ice Bucket Challenge and have cheered wildly as my children have been challenged and answered the challenge in support of this cause and I have matched my kid's contributions to this cause.  I do not envy the attention, I do not secretly seethe at the "unfairness" of attention - instead, I wonder how I might increase awareness of my particular issue (Crohn's Disease) or even nearer and dearer to my heart the condition of my 19 year-old daughter, Trigeminal Schwannoma.  This condition will require her to undergo brain surgery in the next couple of years.  The surgery has a substantial risk of causing permanent facial paralysis and this possibility scares me more than any possible complication or side-effect of my own condition.

Just because you are unaware of other people's health conditions, does not mean they do not also suffer from varying degrees of medical issues.  For instance, many members of my family have issues you would never have known and most likely we would never have told you about:

I suffer from:
Crohn's Disease (and related issues & conditions like kidney stones, fistulas, eye issues, etc.)

My daughter suffers from:
Trigeminal Schwannoma

My wife suffers from:
Endometriosis
Fibromyalgia

My brother suffers from:
Diverticulitis

My father suffers from:
Degenerative disk disease

My mother suffers from:
Sarcoidosis

My maternal grandmother suffers from:
Dementia/Alzheimer's

My paternal grandmother died from:
Cancer

My maternal grandfather died from:
Cancer

My paternal grandfather died from:
Aneurism

My sister suffers from:
Lichen Sclerosis

Diary of a Crohn's Flare: Complications

Consistently during my recovery, my heart rate was elevated, sometimes by a lot.

Intermittently over my recovery, I ran a fever.  On one day my fever reached 102 F.

Because I had performed a rapid taper of prednisone prior to surgery, one suspicion was that I was suffering from adrenal insufficiency.  Therefore, they started giving me mega doses of steroids again (not sure of the exact formulation but it was IV steroids).  This resolved my fever and high heart rate for approximately 24 hours.

Then the rapid heart rate and high fever returned.  During one inspection of the surgical wound we noticed the top end of the wound weeping fluid.  So within the hour, the surgeon, physician assistance, and a team of nurses showed up.  They removed my staples and my wound popped open.

At this point in the process I became a bit "creeped out" and stopped paying close attention to the work they performed on my belly :).

My belly with staples.  Note my belly is very bloated from both surgery and from infection. It turns out the discoloration was likely due to infection and not due to surgical scrub or other reasons for skin discoloration:

The surgeon and physician's assistance worked my entire belly, pushing in from the widest point of my waist towards the open wound.  As they worked the skin, pus came out - a lot of pus.  After they finished I asked one of the nurses how much they removed and she stated it was about 100 cc (about 40% of a cup).  This volume is very much greater than the size of the open wound left in my belly which is now (Wednesday 8/20) perhaps 2.5 cm x 2.5 cm x 2.5 cm (the maximum dimensions of the wound are slightly larger than the opening in my skin).  The wound was somewhat larger at the time they first worked on my belly (which was Saturday 8/16).

Since the removal of the staples, they've packed the wound with "open-celled foam" and applied a wound vacuum.  This is supposed to keep any infection drained and stimulate circulation to the affected area.  My particular wound is not weeping very much fluid (perhaps 1 CC per day).

My stomach is still very bloated, however, much of the discoloration has faded.  The wound vacuum has been applied to the open wound (the open wound is under the strip of foam which is under the suction cup).

I finally got discharged from the hospital on Monday 8/18.  The hospital staff treated me very well, but there's no place like home!

I got my wound repacked today (Wednesday 8/20).

Removing the wound vacuum's dressing tape is the most painful part of the process:

Although I do not find the unpacking and packing of the wound especially painful, it does cause pain, it is uncomfortable, I find it a bit creepy, and I find my levels of pain elevated after they finish working on it for a couple of hours.  For these reasons, I have been taking the maximum dosage of my pain medications about an hour before the nurse's arrival in preparation for the procedure.  In the hospital, Valium was included on my list of allowed medications and I asked for a dose of Valium in preparation.  This worked well for me in the hospital, however, I do not have a script for Valium so I just use my pain medications.

I have pictures of the wound after the unpacking from today and I will post that picture later - it's just not readily available at the time of this posting :)

My open wound is very small compared to some (perhaps 2.5 cm .  My complications are very mild compared to some.  I count myself lucky and feel grateful.

I *may* still have some infection in another location of the wound but between keeping an eye on the wound and the wound vacuum we should

Diary of a Crohn's Flare: Surgical Review/update

An update on the surgery.  Over time I've learned more details about what the surgeon did and why.
All of my diseased tissue (fistula, abscess, diseased ileum, inflamed cecum, etc.) was in a tight knot about the size of a softball in my abdomen and centered my my terminal ileum.  For this reason alone he had to switch from laparoscopic to open abdominal surgery (most people can't fit a softball through an opening an inch wide).

However, there were a few adhesions that also require work and one of these thoroughly cemented the diseased tissue to the blood supply of my colon.  If I was to keep my colon, the surgeon felt he had to get his hands on this particular adhesion.  He stated that I did also have strictures but they were all contained in the knot of tissue he removed (about 8-10 inches of small intestine and 2-4 inches of large intestine).

He also had to remove my ileocecal valve and appendix ( :( ) since these were part of the inflamed portion of my large intestine.

The good news was that ALL of the active portions of Crohn's Disease in my body were contained in this tight knot and that after appropriate recovery from surgery, I ought to have no Crohn's related symptoms or restrictions and I should feel like someone without Crohn's (except I will still have pretty bad diarrhea).

I haven't spoken with my GI doctor yet but I think the plan is still to start with Remicade some time after getting out of the hospital (we REALLY do NOT want the Crohn's to get started again).  I will resume the Imuran and Sulfasalazine.

After completely recovering from surgery, I'll have completely stopped taking steroids and I hope to not have to restart those from another 15 years.

Diary of a Crohn's Flare: The Surgery

The surgeon started performing the operation laparoscopically and managed to complete most (80%) of what needed to be done with the laparoscope, however, I had a very bad adhesion between the inflamed portion of my ileum and the blood supply for my colon.  He could not separate these two laparoscopically, so he had to open me up to get at the adhesion, separate the tissue, and then remove the diseased portions of my ileum

My surgeon was very pleased to discover that the fistula, abscess, and inflamed intestine were all in a small well defined area.  He removed 8-10 inches of my small intestine and a small bit of my large intestine too (for total of about 12 inches removed).  Because of where the diseased tissue was, he removed both the appendix and the ileocecal valve.  It is my understanding that this will exacerbate my diarrhea and that I can expect far more liquidy stools.


My main incision is about 4 inches long.  There is also a 1 inch incision that was used for one of the bits of the laparoscope (I'm not very knowledgeable about how they do this), and another incision in my belly button.

The picture below is clinical in nature, some will find the picture below disturbing.  If you are disturbed by pictures of humans and surgical incisions, you should skip reading the rest of this blog.

What I remember of the surgery was talking to the anesthesiologist about the different color coded ports in his tubing.  During this discussion he injected one of the drugs into one of the ports; I guessed that it was versed for the anti-anxiety effects.  He confirmed my guess.  I do recall him reaching for another syringe but the next thing I remember was waking in the recovery room.

Laparoscopic surgery uses 3 openings plus access through the belly button to remove materials.  Since my surgery was a combination of laparoscopic surgery and conventional open abdominal surgery, I had the incisions for both of these approaches.  Since I did not require the stoma and ileostomy bag, I did not get the incisions for that.

This is what my belly looks like 2 days after surgery:

Update on 8/14:  It turns out that discoloration is NOT from the surgical scrub.  The doctor, nurse, and I are keeping an eye on it.  It could be an infection or bruise but we want to ensure that it doesn't grow.

Update on 1/15: I should have written this earlier but the discoloration shown above came from a wound infection.  A day or so after the picture was taken, the doctor popped all staples off and a wound team drained 1/2 cup of pus from the wound.  The discoloration was caused by that infection working its way under my skin.
 

After surgery - they've removed my NG tube and monitoring electrodes but I still have oxygen, catheter, IV, epidural, and CO2 monitor lines.

The anesthesiologist used an epidural as the primary means of controlling pain.  I do not know what he normally uses to control pain but usually it's dilaudid or fentanyl.  Because he used fentanyl in his epidural, I assume that is what he used as his pain control medication.  I also don't know what he used as a hypnotic to ensure that I slept.

It appears to me that he taped my eyes shut.  This caused me problems.  When I awoke, my eyes were extremely irritated and (based upon a prior incident with a damage cornea) it seemed that they damaged my right eye's corneas.  Luckily, I had experienced this problem before and I knew how to treat the issue.  Unluckily, the hospital didn't have the medications that I used to treat it.  Since it's an OTC medication, the hospital didn't offer the type that I used for treatment (the GenTeal gel), they gave me OTC Refresh PM ointment.

Anyway, I treat myself four times over two days - essentially two per day (morning and evening) and supplemented this with Refresh Tears Eye Lubricant.  Use the second one as often as necessary to remain comfortable.  You might need to work with the hospital pharmacy staff to get permission to do this.

Diary of a Crohn's Flare: Probable Outcomes of Surgery

What's wrong with my gut and what does my surgeon plan to do about it?

What they know is wrong with my gut:

• I have an abscess and it is 1-2 inches in diameter as of the last time the did a CT scan.  I may have additional abscess other issues.
• I have highly inflamed and damaged tissue in my terminal ileum.  The extent of the damage isn't known, however, a colonoscopy revealed that some of the inflammation extends into the cecum (the highest portion of the colon.
• I have strictures in my small intestine that have caused partial small bowel obstructions.
• I have a fistula, probably connecting two loops of my small intestine to each other.

The surgeon plans to begin the operation laparoscopically.  He'll attempt to first drain and then remove the abscess.  However, the surgeon, my GI doctor, and I all believe that I have a perforation in my bowel (the fistula) that keeps refilling the abscess.  So after draining the abscess, the surgeon will likely remove the portion of my ileum with the perforation.

The quantity of small intestine to remove will depend entirely upon the severity of the disease and the length of intestine involved.

After the surgeon fixes these issues, he'll perform a careful inspection of my entire GI tract from the outside.  He'll inspect from stomach all the way down to my rectum.  He'll be looking for a couple of different things:

Adhesions (scar tissue from Crohn's Disease and prior surgeries on the outside of the intestine)
Strictures (scar tissue from Crohn's Disease on the inside of the intestine)
Inflamed tissue (active diseases portions of the intestine in places other than those spotted by the CT scan)
Other signs of infection or fistulas (looking for any other diseased tissue)

If he finds adhesions, he will attempt to remove them.

If he finds strictures, he will try to use a small balloon to try to stretch them open.  If that fails or the tissue is too diseased, he'll have to cut that portion of my intestine out.

He may also find other portions of my intestine with active Crohn's Disease.  Since these do not appear in the CT scans, then it is likely the tissue isn't as damaged as the portion in my terminal ileum.  Therefore, it is likely he won't need to remove any of this tissue.  I hope that he identifies these sections so that we can observe them in the future.

I may have additional fistulas.  In fact, my fistula from last year never completely healed.  I still occasionally bleed from the external opening of this fistula.  I hope my doctor finds the internal opening of this and is able to correct the problem while he's in there.  I'm fairly certain that this isn't a priority.  When I finish healing from this surgery, I may have to return to my surgeon to get this problem corrected.

If the damage is severe enough, then the doctor will disconnect my small intestine from the lower portions of my GI tract.  This will allow my lower GI tract a chance to heal without having food passing through it, however, it also means I'll have to use a ileostomy bag for several months.  After it has healed, then my surgeon will go back in, remove the stoma and reconnect my upper GI tract to my lower GI tract.

The best possible outcome for me would be to complete the surgery as laparoscopic with removing a minimum amount of small intestine.  I've already had 14 inches of my small intestine removed and it is likely I'll have more of it removed in the future, so the more I can keep, the better I'll do.

In my opinion, a more likely outcome will be that the surgeon will have to switch from a laparoscopic to an open abdominal surgery.  My wife states that she heard the surgeon say that he'll try to use the same surgical incision that I have from my 1998 surgery.  The anesthesiologist will use a spinal block that should better control the surgical and post-surgical pain.  From watching my wife recover from her hysterectomy, I anticipate that this will last 1-2 days.  After this time, the pain will be controlled primarily with opiate medications.  This hospital uses dilaudid, which works better for me and causes fewer side effects (I only had one headache during the week of my last hospital stay).

The worst outcome, would be open abdominal surgery with the ileostomy bag which would then require another surgery 4-6 months later.  I do not know whether the second surgery could be done laparoscopic but I assume that it couldn't.

Diary of a Crohn's Flare: Things to take to the hospital

Most of my hospitalizations (including my major surgery in 1998) started with a trip to the ER.  This is one of the rare situations (for me) in which I'll be checking into the hospital in a more orderly manner.

From my frequent trips to the ER, I've developed a list of things that I like to bring with me.  I thought I share that list along with the other things I want to bring with me to the hospital tomorrow:

Things to bring:

• Book / something to read / something to entertain you
• Computer (so I can blog!)
• Ear phones (so I can listen to things without disturbing my lovely wife)
• Neck pillow (like the ones people use on airlines - it makes semi-reclining in bed more comfortable and supports your head so you don't slump.  It also works as a small pillow for my elbow and to hold across my abdomen when I cough)
• Running socks (made of wool & silk, these keep my feet warm but don't let them get sweaty)
• Pajama shorts (I wear these under my surgical/hospital gown)
• Long pajama pants for when I get cold
• Preparation H wipes (hospital doesn't provide them, I prefer to use these when cleaning after a bowel movement since it only takes one wipe to get completely clean)
• Diaper cream (with my Crohn's Disease, I have 8 or more bowel movements a day and my bottom gets very sore and sometimes bloody from it)
• Multiple change of clothes
• Eye drops/gel (they taped my eyes shut and this really irritated my eyes)
• Phone charger 
• Talcum/baby powder (to put on my legs underneath the compression socks) and anywhere you might get sweaty.
• Seasoning (Hospital food tends to be very bland.  When you're permitted to add pepper to your food, you should be permitted to add other seasonings.  I bring Jane's Crazy salt to make the food more interesting).

Things to wear (you typically swell after surgery, so ensure the clothing you bring to wear afterwards is very loose fitting):

• Loose cotton shirt
• (Loose) Shorts
• (Loose) Sweat pants
• (Loose) Underwear
• Cotton socks or running socks (I like the running socks because they keep your toes/feet warm but they also wick away any sweat so your feet never get sweaty).
• Crocks (the no-slip rubber means I can slip them on and wear them during recovery)

Things to take off

• My rings
• My running watch

Diary of a Crohn's Flare: Count down to surgery

Warning: I am NOT a medical professional, you should follow the advise of your doctor in the areas related to your health.


This is the surgical count down that I was given by multiple people (the surgeon, the hospital, and the home health care nurses).

Two and a half weeks before surgery

• Schedule surgery
• Discuss diet with doctor (low-residue)
• Discuss activity level with doctor (walking is fine but no running, no lifting more than 8 lbs)
• Discuss medications with doctor
• Arrange IV antibiotics at home

One and a half weeks before surgery

• Surgical consultation (surgeon isn't sure what he'll have to do, he's given me a range of possibilities which I'll discuss in another post).

7 days before surgery:

• Stop taking supplements (vitamins, minerals, and other supplements)
• Stop taking NSAIDS and blood thinners (doctor said it was OK to continue with the weak heparin solution for the IV flush).
• Get the house's financials in order
• Get my college kid's college paid for
• Arrange for my kids to go to GenCon :)
• Hair cut
• Cut finger and toe nails 
• Wean myself from coffee (so I don't get withdrawal headaches in the hospital)

24 hours before surgery:

• Adopt clear fluid diet (sherbet does not count as a clear fluid :( , Italian ice does :) along with Broth, Jello, Italian Ice, Cranberry juice).
• Pack for hospital
• Wash sheets (so I have clean sheets when I get home)

18 hours before surgery:

• Last IV antibiotic dose
• Last dose of oral medications (down to just 3 oral medications now!)
• Charge my cell phone
• Pack my computer

12 hours before surgery:

• Last food before surgery 
• Last water before surgery

6 hours before surgery:

• Last shower before surgery
• Scrub my entire belly with surgical scrub

2 hours before surgery:

• Check in at the hospital
• Since I have the PICC line already installed, some of the prep work won't be necessary.  I hoping they put me out after not too long :)

Diary of a Crohn's Flare: How I'm doing

Two and a half weeks ago I was discharged from the hospital.  Tomorrow I get surgery.

Today, I've had more pain than normal (running at about a 3 even with the pain medication).  By 2 pm, I have already taken my second dose of pain medicine and am still fairly uncomfortable.  I've also feeling dopey (a side-effect of the pain medication, I think).

Today, I'm also bloated and feel very full.  In preparation for my surgery tomorrow, I've switched to a clear fluid diet (per the surgeon's orders).  Even so, the chicken broth I drank for lunch has left me feeling over full.

I'm also feeling lethargic and not feeling like doing much.  I'm not sure whether this is due to dropping down to 0 mg of prednisone.  Despite the feelings of lethargy I've been working through my list of things to do before the surgery.  I'll write about that in my next post.

However, I'm in a pretty good mood.  I'm actually looking forward to the surgery despite the small bit of fear I have about it.  I know I'll be in significantly more pain after surgery, but I'll also FINALLY be on the road to recovery.  I'll finally be able to put my energies into the things that will help me heal faster.

Diary of a Crohn's Flare: Running hot and cold

Despite "running" in the title, I won't be talking about it today :)

With the rapid tapering of prednisone and my other issues, I've felt pretty awful most of the last month.  Some of the symptoms of this "awfulness" include:

• Body zaps
• Feeling hot / feeling cold
• Low energy
• Terrible acne, especially on my back
• Continuous pain in my gut
• Bloating
• Intermittent nausea
• Weight loss
• Some aches and pains
• Edema
• Some intermittent tingling and numbness of various parts of my body
• Loss of libedo

Body zaps:
This is a new symptom for me.  If involves a feeling almost like electric current running through my body and out to my hands and feet.  It isn't actually painful but it is unpleasant.

Feeling hot & cold
Over the last month or so I've suffered from bouts of feeling both hot and cold.  Due to the several instances of sepsis I've suffered over the last couple of months, I check my temperature every time I feel hot or cold.  So far, I've not had a fever.  For these, I just start feeling warm and break out in a sweat, despite having no fever or sometimes I just start feeling very cold and need to dress more warmly.

Low energy
This isn't so much a feeling of exhaustion for me as more of a feeling of lethargy - not wanting to do anything.  Earlier I experienced periods of feeling severe exhaustion, however, that hasn't been a problem lately.

Acne
I experienced some problems with acne from the steroids earlier during this flare.  However, after my hospital stay (they had me on 60 mg of solu-medrol which equates to roughly 75 mg of prednisone), I broke out in a severe case of acne.  After I returned home, they had me drop down to my pre-hospital dose of 30 mg / day of prednisone.  Today I dropped down to 0 mg (Hurrah!) but I still have the acne on my back.  I'm hoping it'll clear up by the end of my hospital stay next week.

Gut pain
As I mentioned in earlier posts, I actually suffer multiple different kinds of gut pain.  I assume different things cause the different pains.  The main pains include a dull raw pain near my Crohn's which I assume is due to the abscess (usually rates between a 1 and a 4 on my pain scale), sharp stabbing cramping pains which I assume are due to cramping (usually rates between a 3 and a 6 on my pain scale), bloating and a sense of fullness (which I'll discuss in the next section), and an occasional burning sensation (usually rates about a 3 on my pain scale).

The norco works well in suppressing abdominal pain for me.  A full pill generally drops the pain level by about 2 on my scale.  Since my release from the hospital, I've generally been taking full pills rather than half pills.  On most days I've needed 2-3 of the pain pills but I've had a few days with no pain medication and two days on which I was eagerly awaiting my next dose of pain medication.

Bloating
My abdomen has been distended continuously since before my admission to the hospital on 7/19.  Since then the distension has been worse.  When I've had more severe bloating, it's accompanied by a full sensation which makes me feel like I've eaten a Thanksgiving dinner and simply don't have room to eat anything else.  I can have these feeling even when I haven't eaten for 12 hours or more.  Occasionally my distension eases somewhat and my belly gets softer.  When this happens I take the opportunity to eat :)

Intermittent nausea
Some days I've had nausea and need to treat for nausea through the day and other days I don't have it.  I'm not sure why the nausea comes and goes like this.  I have generic phergan to help with the nausea but I usually start by sucking on peppermint candies.  These are often sufficient to suppress the nausea and they don't make me sleepy.  When I'm feeling nauseated, I can only tolerate the thought of eating a couple of foods, the two that work the best for me are chicken broth and sherbet (I prefer mango).  So far I've been able to eat some sherbet no matter how nauseated I've felt.

Weight loss
After my release from the hospital I lost about 5 lbs.  My nurse told me to try to put some weight on in preparation for surgery.  Since I'll almost certainly have a small bowel resection, they won't let me eat until after my bowels start moving again.  This can take a few days or a week.  Since being asked to try to put on weight, I've managed to get my weight back up to normal but I haven't been able to gain any more weight.

Aches and pains
I've been told that rapidly tapering off prednisone, that I could suffer from joint pain.  Mostly this hasn't been a problem but on some days I have had some joint pain.  When I have joint pain, it has mostly been in my knees but I've also had some shoulder and ankle pains.  I can't really take any ibuprofen or aspirin for these pains so I've just lived with them.

Edema
This hasn't been too bad for me.  I did take one diuretic since my release from the hospital.  This was primarily to deal with swelling in my legs that made me knees and ankles feel stiff and swollen.

Numbness & tingling
I'm not certain what this relates to.  I assume that it has as much to do with my use of Benadryl as anything else.  I usually have the numbness and tingling after taking Benadryl.

Loss of libido
My desire for sex has dropped considerably.  In fact, I haven't initiated or even hinted at wanting sex for more than a month now.  When my wife initiated earlier this week, I was interested but for the first time in my life I wasn't able to have intercourse :( .  Thankfully, I was able to satisfy her in other ways :) .  I attribute part of the problem to pain, part to pain medications, and part to my body just not having the energy for that sort of thing.

After my last surgery, my libido didn't decline and I was able to have intercourse even before the doctor officially approved of the adventure.  My loss of libido is more of a loss of interest in initiating an encounter.  When my wife has initiated, I've generally been receptive so maybe the problem is more related to impotence.  Luckily there are medications that can help with this.  If my problems persist after surgery, I'll ask my doctor about a prescription for one of these drugs.

Diary of a Croh's Flare: When to go to the ER

This is a tough question and it'll depend upon you, your disease, and how familiar you are with your disease.  I'll write my particular guidelines in a minute but I suggest that whenever you are in doubt, call your physician and see what he thinks.

Lately, it seems to me that doctors are less willing to tell you what you should do and they won't give you a definitive answer.  If this happens, ask them "what would you suggest if I were one of your family members?"

If this doesn't work, then I would err on the side of caution and go to the ER.

Until this year, I had become very familiar with the pains and sensations of my Crohn's Disease.  So, even when I was having quite painful partial small bowel obstructions, I almost always stayed home.  In cases in which I thought I had a partial small bowel obstruction, the warning signs that I should get to the ER were pain that was not controlled by the medicines I had or a fever.  If I got either of these, then I did go to the hospital.

Since I developed the abscess, the symptom that I used to decide whether to go to the hospital has been fever.  One of my doctors said 102 F was the magic number, I believe the Mayo Clinic said 101.6 F was the magic number.  I would say that if you know you have an abscess or fistula, then if you develop a fever, you should be ready to go to the hospital.  If your fever goes over 102, then call your doctor and prepare to go to the hospital.

Sorry if this entry is a bit disjointed, I'm writing after having taken Benadryl and Norco; so I'm feeling a bit disjointed :)

Anyway the main concern I can think of for IBD patients is bowel perforation.  In conjunction with a small bowel obstruction, the perforation will cause severe pain - for me this was one of the most painful experiences of my life (on par with the pain of major surgery).  Alternatively, your bowel could perforate in a slower manner with a fistula.  The fistula will also cause pain but it will be a much lower level of pain over a much longer period of time.

If either of these things happen you could develop sepsis (infection getting into your circulatory system) or peritonitis (infection getting into the spaces between your organs in your abdomen).  Both of these are life threatening.  Both of these cause your body to develop a fever to fight off the infection.  For me, I can tell I'm developing a fever when I start feeling extremely cold and begin shivering.

Peritonitis will cause abdominal distension.  With my abdominal abscess flares of my symptoms cause abdominal distension (what I call bloating) and my abdominal muscles also go very rigid.  For the last several months, I've had some bloating almost continuously.  At times I look like I'm 6-7 months pregnant :| .

Sepsis
Fever
Rapid heart rate
Rapid respiration
Source of infection
Abdominal pain



Peritonitis
Fever
Abdominal distension
Nausea/vomiting
Loss of appetite
Thirst
Low urine output
Fatigue
Inability to pass stool or gas

Additionally, I have sometimes experienced a feeling of unwellness that is nondescript and doesn't fall into any of the categories listed above.  If this happens to you then depending upon how bad you feel, you should consider getting this checked out too.

Listen to your body, if you are experiencing issues that are not familiar to you be sure to speak to your doctor about it before it becomes an emergency.  If you feel like it is an emergency, it is better to check it out and be found wrong than to not get it  checked and discover that it is an emergency.

Diary of a Crohn's Flare: Disability and work

Since last May, I've been working from home when I can.  When I'm at home but don't feel like I can work, I've taken PTO (paid time-off) which counts as both my sick leave and vacation leave.

Because I've missed so much work, I requested the paperwork required for intermittent disability leave.  I completed my portions of the documentation and then left the forms with my GI doctor.  They completed the forms and returned them to my employer.

Work granted me intermittent disability leave of up to 3-4 days for 3-4 times each month.

With my recent hospitalization and the drugs I'm taking now, I really don't feel like I can work at all (between feeling dopey from the drugs, tired from the condition, and pain).  So I requested the paperwork for full-time disability (I'll need it for the surgical recovery anyway).  I've completed this paperwork and turned the documents over to my surgeon.  I haven't heard whether this paperwork has been completed or accepted yet.

I don't know whether I should pursue social security disability or not.  I mentioned earlier this year that 'd look into doing that but I have not investigated the issue yet.

Diary of a Crohn's Flare: Rapid Steroid Taper

In preparation for my surgery scheduled 8/11, I am tapering off prednisone rapidly.  This involves dropping by 10mg / day of prednisone every 4-5 days.  I've performed one drop (from 30 mg/day to 20 mg/day) and will do another on the day after tomorrow.

Unfortunately, the rapid taper leaves me feeling unwell in a nonspecific way.  I can't point to any single issue (pain, achiness, etc.) that makes me feel bad, however, I do not feel very good.  I often feel hot & sweaty despite not having a fever.  Pain comes and goes in my gut (but I can't honestly say I know this is due to the prednisone taper).  I'm tired and listless, sometimes falling asleep while working on my computer (like right now).

Despite tapering off the prednisone, I've broken out in acne all over my back :(

Some days are better than others.  Some days I've needed as little as 3 1/2 pain pills.  Other days, I've needed the maximum dose and wanted more.

Between the abscess / infection, opiate pain meds, benadryl with my twice daily IV antibiotics, Phenargan (anti-nausea medications), and the steroid taper; I'm not very energetic.  I'm finding it hard to get much of anything done.

Diary of a Crohn's Flare: A major set back

The evening of Friday 7/18 (the night I got back from the presurgical consultation and getting the midline removed), I developed the full sensation and severe bloating I normally associate with a partial small bowel obstruction.  I was uncomfortable enough to take the maximum dose of my pain medication and it still kept me from falling asleep.

Around 2-3 am, I was finally able to climb into bed and fall asleep.  I awoke around 5 am "freezing to death" and piled blankets on me.  By 6 am, I knew I had a fever and took my temperature.  It had gone up to 102.3 or so.  Over the next hour my pain continued to increase my pulse & respiration became very rapid and my fever went up to 103.6 F.

I woke my wife up and told her what was happening.  She called my doctor's practice and they both agreed I needed to get to the hospital.  My wife got me to the hospital by 7:30 am or so and they got my vitals as temperature around 102, heart rate at 145, blood pressure was 100 over 50 or so - and they admitted me almost immediately.  My understandings is that an elevated fever, with rapid heart rate & respiration were signs of sepsis.

While at the hospital they tried getting blood and inserting an IV line and blew out my veins multiple times (2 weeks later, I still have bruises up and down my arms from the problems they had).  Once they got the IV in they ran saline at 175 ml per hour (almost as fast as they could) and offered me dilaudid (a very powerful opiate), which I accepted.  This really helped knock back the pain.

However, my blood pressure continued to fall.  It got as low as 73 over 40 at one point and from the looks I was getting, I figured I wasn't far from getting sent to the ICU.  They performed another CT scan and found that the abscess had grown 40% from the scan taken just 1 1/2 weeks earlier.

All during this time, I drifted in and out of consciousness and when I had to move around I felt extremely .  I figured it was partly due to the low blood pressure, partly due to my lack of sleep, and partly due to opiate pain meds.  By 2-3 pm or so, my blood pressure began to slowly return to normal but it didn't get back into the normal range until Sunday morning.

Getting IV Tygacil with my rubber chicken - feeling a bit better.

My doctors decided to keep me in the hospital the entire week (I didn't get discharged until 7/25).  During my stay, they took another CT scan (to see how the IV antibiotics did) and found that the abscess had grown a bit more, however, the abscess had became more consolidated / organized.  Instead of appearing to be multiple small abscess, it looked more like a single large one.

My joke to the hospital staff - they hadn't been letting me eat anything so I warned them to keep their hands away from my mouth.  One nurse was very worried when she first saw the message.

They kept on a fluid diet most of the time (to rest my bowels) and treated me with pain meds, antibiotics, and steroids.  The GI doctor and surgeon were undecided about whether to proceed with surgery immediately or to try to wait.  Ultimately the surgeon decided to wait for 2 1/2 weeks forcing me to do a rapid taper.  He is hoping to avoid performing two surgeries: cutting out the most diseased portions of the intestine and installing an ileostomy bag.  This would allow my lower gut to recover from the surgery and disease.  It would be followed by a second surgery 4-6 months later to reconnect my ileum to the lower portion of my intestines.

Even though we are performing the rapid taper and attempting to do this in one surgery, there's no guarantee that this is how the surgery will go.  The doctor stated that he has no idea what he'll find and what he'll have to do to correct my issues.  We're hoping a single surgery will be sufficient.  We're hoping that he can do what needs to be done laprascopically.

At this point, I just want to get the surgery done so I can begin healing.

Diary of a Crohn's Flare: Abscess responds to antibiotics

During this time, I continued taking my oral antibiotics too (that was Ciprofloxicin and Flagyl) because the doctor did not order me to stop taking them.  During the second week of IV & oral antibiotics I began to run low of the oral antibiotics, so I called my doctor and asked them to refill the oral antibiotics.  At that time, my doctor told me to stop the oral antibiotics.

The last week after completing the IV antibiotics, I got another CT scan.  It revealed that the abscess had not decreased in size.  So my GI doctor discussed surgical intervention with my colorectal surgeon.  They scheduled me for a presurgical consultation with the surgeon.

In the meantime, they kept the midline in but I didn't infuse any medications.  To maintain the line, I had to flush at least once per day with saline and Heparin.

I did very well during the week I spent after finishing the IV antibiotic but before meeting the surgeon.  I didn't require any pain medication and my energy levels and general sense of well-being improved.

At the surgery consultation (7/18), the surgeon scheduled me for surgery around 9/1 to give me time to taper off steroids and stop taking the Imuran.  While in the appointment, I asked the surgeon about the midline and he said we would not use it and we could remove it.  In fact, he offered and we agreed to remove it during the appointment - which he did!

So the plan was laid, 6 weeks then abdominal surgery to resection my diseased bowel, drain the abscess, and fix anything else that needed fixing.  The doctor planned to begin the surgery as laprascopic and only switch to open abdominal if necessary.

Diary of a Crohn's Flare: Allergic Reaction to IV Antibiotics

It's been a while since I last posted.  Much has happened and I have to get caught up on entries before Monday 8/11 (you'll see why later).

After 3 days of IV antibiotics, I experienced a mild allergic reaction to the IV antibiotics (my chest and neck flushed red).  I didn't get hives, welts, or even feel itchy but it was enough that the on-call nurse told me to begin taking the IV Benadryl with each antibiotic infusion.

This modified my infusion in a couple of ways.  The IV Benadryl literally puts me to sleep for 2 hours after I get it.  So I gradually moved my IV antibiotics from 6pm back until 10 pm.  That way I could just go to bed afterwards.  With the Benadryl, I had no problems getting to sleep!

Also, instead of using the S.A.S.H (saline, antibiotic, saline, and then heparin) method, I had to add an additional saline & then Benadryl so the infusions were:

1. Saline
2. Benadryl
3. Saline
4. Antibiotic
5. Saline
6. Heparin

So now when I get antibiotics (especially IV antibiotics, they're predosing me with Benadryl).