Diary of a Crohn's Flare: the Broncoscopy

One of my diagnostics for this hospital stay was a broncoscopy.  This was my first broncoscopy and so I thought I'd share my experience.

Because the broncoscopy required sedation, I was given the "nothing by mouth" (NPO) order the night before the procedure.  Since I was only on full fluids at the time, it wasn't too difficult to go without food.

My broncoscopy procedure began with medical staff verifying my lack of drug allergies and taking my vitals.  Then they began me on an inhaler filled with lidocane.  The purpose was to numb my esophagus and lungs.  It took 15-20 minutes to complete the lidocane inhaler.  The aerosol tasted awful and also caused me to cough.  While I was on the inhaler, they began giving me IV sedation medication (I believe the started me with the Versed).

As far as I know, the medical team used Versed and Demerol for my "waking" sedation.  Normally I remember some of the procedures when only these two drugs are used for sedation, however, after initially losing consciousness, I don't recall anything before I woke up in the recovery room.

What I do recall before falling asleep was being wheeled into the procedure room.  They had the broncoscopy equipment set up in front of me and I could see the screen which would display what appeared in the broncoscope.  The nursing staff leaned me back to about a 30 degree incline and that's about all I remember.

The pulmonologist mentioned that they did not notice anything abnormal in my lungs with broncoscope.

When I recovered from the procedure, I did not suffer from coughing fits (although I'm told this is a common side-effect of the procedure).  Because I had abdominal surgery a few weeks before this hospitalization, the small amount of coughing I did experience was more painful than normal.

During the procedure, they performed a "wash", "brushing", and "biopsy".  The wash / flush just rinsed the tissue with water which was suctioned up and then cultured.  The "brushing" took a brush and brushed the lung tissue and then this tissue was cultured.  The "biopsy" inserted a needle into the lung tissue and withdrew a core sample of tissue at one of the sites indicated by the chest CT scan.  Then this core was cultured for organisms.

The first two of these samples did not culture any foreign bodies.  However, the biopsy tissue did culture an organism and this was also the Cryptococcus Neoformans.

Infection with C. neoformans is termed cryptococcosis. Most infections with C. neoformans consist of a lung infection. However, fungal meningitis and encephalitis, especially as a secondary infection for AIDS patients, are often caused by C. neoformans making it a particularly dangerous fungus. Infections with this fungus are rare in those with fully functioning immune systems.

The NIH's comments on C. Neoformans include these comments:
Cryptococcus is one of the most common life-threatening fungal infections in people with AIDS.

Central nervous system involvement often causes death or leads to permanent damage.

Another site indicated that when C. Neoformans progresses to meningitis or encephalitis most people die even with treatment.  Most of the people who do survive will suffer from some brain damage.  However, in my case there was NO indication that this infection had spread beyond my lungs.

The infectious disease doctor stated that it'll take a minimum of 6 months of treatment for me to eliminate this infection.  He also stated that I may never be permitted to use Remicade or other biological anti-Crohn's medications.

Diary of a Crohn's Flare: a Long Absence

Much has transpired since my last post made on 9/8.  The reason for my long absence is that I've felt like crap and hadn't had the energy or motivation to compose any posts.

My hospital stay which started on 9/7 continued through 9/11.  The first couple of days of my stay focused upon the bowel obstruction.  First with diagnosing it and then treating it (which mostly consisted of pain management and limiting my diet).

My doctors who reviewed the CT scan indicated that the bowel obstruction occurred upstream of the location of my surgery.  This meant that I suffered an obstruction in a location not compromised by intestine severely affected by Crohn's or surgical scarring.


One of the diagnostics was a CT scan of my abdomen (taken on 9/7). Here's the summary of the CT scan results:

IMPRESSION:
1. Findings suggest partial small bowel obstruction.
2. There is induration/inflammation around the ileocolonic anastomosis in the right abdomen but there is no discrete abscess in this area.
3. Small fluid collection in the anterior abdomen deep to the midline wound. This contains no gas bubbles. It could be sterile or infected.
4. Potentially significant abnormality in both lung bases where there are new nodular infiltrates. These are only partially included on the study. A CT scan of the chest with intravenous contrast is suggested for further evaluation.

Item #2 indicates that they see something going on near my bowel resection but that it doesn't look like an abscess.
Item #3 indicates that I *could* have an infection under the incision wound.
Item #4 indicates big problems.

The radiologists report ended with a recommendation for a CT scan of my chest.

The radiologists report on the chest CT scan (taken on 9/7 too) looked like this:

IMPRESSION:
Multifocal pulmonary consolidation, consistent with pneumonia. A subcentimeter cavitary nodule is present in the right middle lobe. If the patient is immunosuppressed, one should consider opportunistic infection.

It was explained to me as "atypical pneumonia".  Ironically, I was displaying no overt symptoms of this pneumonia - no fever, no coughing, no wheezing, and no crackling in my lungs.  In fact, I was told repeatedly by the doctors they could not believe that I was sick.

At this point I had several doctors looking in on me on a daily basis.  This included my surgeon, pulmonologist, infectious disease doctor, and an internal medicine doctor.  They concluded that my prednisone use with Imuran suppressed my immune system enough that an opportunistic infection had set up in my lungs.

The second part of my hospital stay was a series of diagnostics intent on figuring out what was infecting my lungs.  This included 40 blood tests and a broncoscopy with biopsy.  The initial diagnosis based upon the results of a blood titer test (a test which indicates my body had developed antibodies to an organism) revealed that I likely had Cryptococcus Neoformans.

This organism is a fungus and is consider an environmental pathogen - meaning its spores are commonly found in the environment around my home.  People without compromised immune systems rarely suffer from infections by this organism.

Because this is a fungal bug, they immediately started me on anti-fungal medications.  The dose they put me on, 400 mg of Diflucan per day, is much higher than I've ever been on before.  Because of this, they are monitoring my kidney and liver function using blood tests every 2 weeks or so.

The doctors held onto me for several days to ensure that the bowel obstruction cleared and they had gotten enough blood tests started.  I was told that it would take 2-8 weeks to get the results from all of the tests.

Diary of a Crohn's Flare: Four steps Back

Since I sent my last message, I've experienced a number of developments.

First,
(Mentioned in a previous post) The wound seems to be growing and not healing properly.

The bad news is that my doctor has elected to try to surgically correct the problem.

Second,

My fistula, treated last summer, resumed its shenanigans.  It has resumed discharging blood & pus and I now have a swollen nodule underneath the fistula outlet.  This nodule shrunk in size from two finger widths (1.25"?) to one finger widths (.675"?).  It is uncomfortable and somewhat painful.

The bad news is that this causes me pain and discomfort.

The good news is that both the surgeon and GI doctors feel that the Remicade treatment will clear this problem without further treatment.

Third,
Saturday night I experienced what I thought was a partial bowel obstruction.  I went to the hospital, and based upon their diagnostics (CT scan, blood tests, urine tests, palpitation of the abdomen), the medical staff agreed with my assessment and admitted me. 

The bad news is I'm back to the NPO "nothing by mouth" diet.  This is a great weight loss diet but isn't fun.  :(

The good news is the hospital can treat me with heavy duty pain meds and knock the pain back.  They provided me with medications for pain and nausea.  Now I'm feeling quite comfortable and I'm able to sleep again.  My surgeon has promoted me to a clear fluid diet.

Fourth,

The CT scan performed on me to confirm the diagnosis of bowel obstruction also imaged the lower portion of my lungs and found "nodules" there.  The doctor ordered a second CT scan of my lungs and this confirmed that I have unexplained/unusual nodules in my lungs.  The initial assessment was that I had pneumonia, however, the doctors are rethinking this conclusion because both my symptoms and the nodular appearance in the lungs are atypical for pneumonia.

The bad news is that they will probably not release me from the hospital until after they've got these nodules figured out.  Also from the research I've done, there are very few possible explanations for these lung nodules that are not bad or very bad news.  Rather than spending time worrying about what it could be, I'm waiting for a consultation with the pulmonologist today (Monday).  I may be getting a bronchoscopy today so that the pulmonologist can see what is going on and get a biopsy.  Because I will need sedation for a bronchoscopy, I'm restricting myself to NPO until I learn what we'll be doing today.

The good news is that if this is an infection or cancer, then we identified it before starting the Remicade.  Taking Remicade with an active infection that can cause these nodules or active cancer would be a recipe for disaster.  So in a way, the bowel obstruction may have been a a huge blessing in disguise.

I should either learn more about what's going on sometime today, in which case I'll try to post what they find OR I should discover what other diagnostics they think I'll need. 

Less tubes than August and about the same food.  Due to the obstruction, I got no food for several days.

Diary of a Crohn's Flare: Dealing with a sore butt

I suffer from severe diarrhea.  Several issues contribute to the problem:

• Crohn's Disease
• 14" of small intestine removed in 1998
• 12" of small + large intestine removed on 8/2014
• Ileocecal valve removed on 8/2014
• Recent surgery
• Extremely low fiber diet
• Troubles digesting the soy proteins found in Ensure

All of these factors contributed to having 8 or more (sometimes many more) per day.  All of this action and the associated clean-up after each of these made my rectal area very sore and sometimes caused it to become so raw that bled.

In addition to these issues, I also contracted a yeast infection in the area a couple of weeks after the surgery.

Needless to say, I've been uncomfortable.

I deal with these issues using the following:

Cleansing Wipes:

Each time you clean after a bowel movement, the material you use can leave micro-lacerations (cuts) in the rectal tissue.

I only clean with (generic) Preparation Wipes.  Although the wipes contain alcohol and can cause some pain when used, I am able to complete clean after a bowel movement with only 2 wipes of the area.  Fewer wipes of the area causes less abrasion of the tissue.  The witch hazel in the wipes works as an astringent which helps close up any microscopic lacerations left after cleaning.  The aloe in the wipes both soothed the tissue and helped it heal.

Preparation H/Diaper Cream:

When the soreness and itching get really bad, consider using either diaper cream or preparation H ointment/cream.  Both of these help protect the rectal tissues from exposure to your stool.  They also provide a little protection from damage caused by cleaning up after a bowel movement.  Lastly they aid in tissue healing.

Diaper cream works better as protection while Preparation H does better at aiding healing.  Both of these seem to work fine for me.

Sitz Baths:

Several spots on your body have poor circulation compared to other spots on your body.  Both your feet and your butt have about the worst circulation on the human body.  To aid in healing, you can apply heat to these spots to help stimulate blood flow.  Luckily, the heat also feels soothing to sore tissue.

One way to apply heat to rectal tissues is to sit in a bath of hot water.  One method of providing hot water to sit in is a "Sitz Bath".  This is a plastic bowel that sits in toilet and contains hot water.  Furthermore, a vinyl bag can be filled with even hotter water and hung above the bowel to supply fresh hot water to the Sitz bath bowel allowing the hot water bath to last longer.  Epsom salts can be added to this water for certain conditions (like treating fistulas or abscesses?), however, for the purpose of aiding healing to sore rectal tissue, I recommend not using Epsom salts.  Ask you doctor about this before using them.

Also as I mentioned before, the Sitz bath provides relief to both soreness and itching in the area.

Yeast Infection

When you take Sitz baths regularly, you will be making this area much more moist.  This significantly increases the chances that you get a yeast infection.  To deal with the yeast infection, use over the counter (OTC) yeast infection remedies by following their directions.  However, you should also notify your doctor of this development and inform him of how you plan to treat it.

I've found that generic remedies for yeast infections work just as well for me as the name brand remedies but they're much less expensive (sometimes half as expensive).

Involve your doctor:

Discuss the problem with your doctor (the diarrhea, frequency of stools, consistency of bowel movements, and the soreness of your rectal tissues).  Ask your doctor what else you should be doing and/or other things that you can do to treat it.


Good luck!

Diary of a Crohn's Flare: Two steps Forward...

A brief history of my recovery from surgery:

8/11 - Surgery
Intermittent fevers, elevated heart rate, and occasional lower blood pressure
8/16 - Infection found in the incision
8/17 - Wound vacuum applied to the wound (negative pressure therapy), wound size about 2.5 cm x 2.5 cm x 1.5 cm
8/22 - Home health care starts and the wound dimensions are down to 2 cm x 2 cm x 1 cm
8/26 - Wound shows signs of infection (warm to touch and purulent exudate)
8/26 - Wound vacuum removed and wet/dry dressing applied to the wound
8/29 - Surgeon examines the wound and finds the healing satisfactory.  He debrides the wound to aid in healing.  He expands my diet to a "full diet."

Today (9/2) the home health care wound nurse changed my dressings and found some "sero-purulent" exudate (not necessarily infected but a cause for mild concern).  Furthermore, the wound nurse measured the dimensions of the wound and it is now 2.5 cm x 2.5 cm x 1.5 cm (back to its original size :( ).

Some good news is that a small hole in the wound "pit" has closed up a bit.  She could "see" the hole but when she attempted to probe into the hole with a medical applicator, she was unable to insert the applicator into the hole (previously she had been able to insert the applicator into the hole).

The net result is that the home health care nurses will ask the surgeon's office whether they should resume wound vacuum therapy.  I'll update this post later with the results of that request (I should discover that later today or early tomorrow).

Diary of a Crohn's Flare: Sex during this Flare

Warning: this post contains information about my sex life.  If you find this sort of information lurid or offensive please stop reading now and move on to my next entry.

Background

I've always had a bit higher than average libido and my libido is certainly higher than my spouse's libido.  I have typically wanted sex 2-4 times per week and we have typically had sex once per week to once per month (and sometimes less often than that).  This has been a source of constant strain throughout our marriage.

On a side note (and you'll discover the significance later in this post :) ), I had long considered a morning erection to be a sign that I urgently had to urinate.  However, over the last couple of years, I ran across an article which indicated that morning erections were a response to the body's release of testosterone,  Before the start of this Crohn's flare, I would normally experience a morning erection several times per week.


I found that running or other exercise tended to both increase my libido and increase the number of morning erections that I experienced in a week.

Abscess 1

With the beginnings of this flare in December of 2013, I found that my libido declined.  I knew I didn't want sex as much but I wasn't certain why this was.  I was in constant low-mid level pain, I was taken opiate pain killers, jarring motions caused more pain, I had intestinal cramping, and I simply didn't feel all that well.  I really didn't spend too much time thinking about it because my spouse was understanding (or maybe relieved) by the decrease in my libido.

Over the period of time from December of 2013 through May of 2014 we settled into the habit of having sex once every 1-2 weeks depending upon what was going on in our lives.  Since I was traveling out of town nearly every week for work, if we missed an opportunity on the weekend, that would often translate into no sex until the next weekend.

I did not find this decrease in sexual activity as frustrating as I had in previous years.

Abscess 2

I was diagnosed with my second abscess in June of 2014.  This abscess was somewhat less painful in the beginning than the December 2013 abscess.  However, it lingered and over time, I began to feel much less well throughout my body.

As the treatment continued for this abscess, I suffered from multiple bouts of sepsis.  These both hurt and added to the sense of systemic unwellness.  I suspect my body's fight against this infection used up much of my energy reserves.  Honestly, I stopped physically desiring sex at all over this time and although I remained mentally in favor of having sex, I felt no urgency in ensuring that it happened.  From the diagnosis of this abscess until now (9/2) all sex that I've had with my spouse was initiated by my spouse.

The frequency of sex was very rare over this time.  I believe we only had sex once while I had the mid-line installed.  I do not think we had sex at all while I had the PICC line installed - although we did try, I was unable to maintain an erection.  Once again, I believe that my body was simply to sick to muster the resources necessary for sex.

Surgery & Recovery

After my previous major surgery in 1998, I managed to engage in sex with my spouse only two weeks the surgery before discovering that I should refrain from sex for a number of weeks.  I didn't cause damage to my incision and it was satisfying but I also required pain medication in order to do so.  We later found out we were supposed to refrain from sex but we continued to have sex - rarely - before the surgeon gave us the go-ahead.

After this surgery, my wife explicitly asked the surgeon about when we could resume our sexual relationship.  The surgeon admonished us to not have sex for six weeks after the surgery. He told us they were afraid of putting too much stress on the sutures and/or causing a hernia.

Despite this my wife and I successfully engaged in intercourse 11 days after the surgery.  We used a position in which I remained essentially motionless and she did all the movement.  I have to say the sex was very satisfying, however, I was also in more pain for a day or two afterwards.  My advice to others is: follow your surgeon's advice but if the patient simply can't wait that long, do everything in your power to minimize the stresses to the incision.  Also be prepared to pay some consequences for disobeying the surgeon's advice.

At the risk of providing a bit too much detail, the position that worked for us was me sitting up-right in bed and my wife mount my by sitting astride me.  She provided all of the motion and I worked very hard at not providing any motion.