Saturday, May 31, 2014

Diary of a Crohn’s Flare: How things progress



Because Remicade shuts down the body’s ability to fight certain illnesses and tumors, my physician wrote orders to screen for some of these diseases.  The screens required to for starting Remicade included the following for me:


  • Chest x-ray (looking for Tuberculosis, Histoplasmosis, and Hepatitus)
  • Blood screen for hepatitis
  • Blood screen for Tuberculosis
  • Skin test for Tuberculosis


I’ve gotten the results from all but the last of these and they were all negative.

I will get the results of my TB skin test tomorrow.  Today the site looks negative.

Because I also have a history of a high PSA (Prostate Specific Antigen) and I also spent 6 years as a life guard, I also arranged to speak to my urologist and a dermatologist about my concerns.

The urologist stated that he had no qualms about me starting the biologicals.  He felt that the risks were minimal and he encouraged me to start the treatment.

The dermatologist inspected my moles and found several that required closer examination.  One in particular was worrisome but didn’t require immediate action.  She recommended that my wife inspect the mole on a monthly basis and that the dermatologist inspect them again in a year.  We made a follow-up appointment for it.  However, she also encouraged me to begin treatment and found no reason to postpone treatment.

On Monday I’ll get my CT scan.  I should get the radiologists report from that scan by Tuesday.  If all goes well, I could be eligible to start the Remicade at that time.  If so, then it’ll be a simple matter of scheduling the first infusion.  I hope to get the first infusion within a week of approval.  However, I have no experience with the infusion centers and don’t know how long it normally takes from scheduling to getting an infusion.

Diary of a Crohn's Flare: February colonoscopy details

I got a copy of the physician's report from my late February colonoscopy.

FINAL PATHOLOGIC DIAGNOSIS:
A. Colon, cecum, polyp, polypectomy:
Tubular adenoma, negative for high grade dysplasia or
malignancy.
B. Colon, sigmoid and rectum, biopsy:
Colonic mucosa with congestion and focal neutrophilic
inflammation.
Negative for features of lymphocytic or collagenous colitis.
Negative for granulomas, dysplasia or malignancy.
Comment: The biopsies from the sigmoid colon and rectum show
colonic mucosa with intact architecture, focal congestion
and focal neutrophilic inflammation of the crypts. No basal
lymphoplasmacytosis, architectural disarray, Paneth cell
metaplasia, granulomas, dysplasia or malignancy is
identified. Clinical correlation is recommended.

COMMENTS:

CLINICAL HISTORY:
Signs, symptoms, medications and previous diagnoses:
Crohn's disease of small bowel and colon, follow up of
Crohn's disease of small bowel and colon.
Endoscopic findings: Perianal skin tags and perianal
fistula, stricture at ileocecal valve, 5 mm polyp in cecum,
erythematous mucosa in rectum and sigmoid colon


"Tubular adenoma or adenomatous polyp - These are the most common type of polyp and are the ones referred to most often when a doctor speaks of colon or rectal polyps; about 70% of polyps removed are of this type. Adenomas carry a definite cancer risk that rises as the polyp grows larger. Adenomatous polyps usually cause no symptoms, but, if detected early, they can be removed during a colonoscopy before any cancer cells form. The good news is that polyps grow slowly and may take years to turn into cancer. Patients with a history of adenomatous polyps must be periodically reexamined.


More polyp types can be found at the Colon Cancer Alliance.

Basically, the pathologist found no evidence of cancer.  Based upon my Crohn's and polyp, the doc recommended performing another colonoscopy within 2 years.

The comments section is consistent with Crohn's Disease but is not diagnostic of Crohn's Disease - meaning the pathologist can't declare that what he saw MUST be Crohn's Disease, however, it is typical of Crohn's Disease.

Thursday, May 22, 2014

Diary of a Crohn's Flare: A lot has happened.

Sorry for the hiatus between this and my last post.

I've been exceedingly busy and tired out from my responsibilities (both my own and other family members).  When I haven't been busy, I've been too tired to write.

I've had good streaks of up to 3-4 days of minimal pain and no pain medications.  I've had bad streaks of similar duration and needed up to 2 or so Norco per day (taken 1/2 pill at a time).

As previously mentioned, I have completely abandoned doing any running.  My running seemed to exacerbate pain and other symptoms.

I have begun resuming the consumption of fiber, however, I limit myself to pureed goods (such as V8, applesauce, and other such fruit & vegetable products).

I had an appointment with my doctor and I let him know how things were going.  He felt I should start with the biologicals.  I decided independently that even if I was improving that I was not improving fast enough and I wanted to start them too.

I picked up a case of Thrush and started taking Fluconazole for the thrush.  Within just 2 days the thrush got a lot better.  I'm still taking the fluconazole but the Thrush is almost completely gone.

In order to qualify for biologicals I need to get screened for potentially complicating conditions.  I've gotten my blood draws (for hepatitis and TB) and chest x-ray.  Now I need to get my TB scratch test.

However, three days ago I developed a high fever along with pretty intense belly pain.  My doctor ordered a CT scan and the scan revealed that I had developed another abscess.  So we've got to get that cleared up before I can start the biologicals.

Also, I've decided I will start with Remicade first.  My doctor's office is signing me up for RemiStart.  It will apparently help me pay for the first $8000 of drug costs.  For me this will be very helpful.  I'm within about $3000 of reaching the max out of pocket amount for my insurance.  I'm planning on writing another entry to discuss how I plan to pay for the cost of Remicade.  FYI, the cost was a major part of my decision to start with Remicade.  Humira was going to cost me vastly more ($5000 vs $800 for the year after the insurance picks up its portion).

I'm up to about 16 prescription scripts plus many OTC vitamins and supplements and I'm not happy about it.