My GI Guy

We had a phone consultation with Dr. Seth Shaffer, the Crohn”s GI specialist this past Friday.

The phone call lasted about 45 minutes and started with me giving a detailed history from my perspective of everything that has lead up to this point. He indicated that he’s had several discussions with Dr Hyun the Colo-rectal surgeon and has reviewed all the scans and biopsy results.

After all the review,, he is still not sure why this is happening or exactly what “it” is. The consensus is that it is Crohn’s, mainly because perianal abscesses and fistulas are associated with Crohn’s but it’s unusual to not to have bowel issues as well. Apparently only 5% of people have Crohn’s without any bowel issues.

Again, all the biopsies are reviewed and don’t show cancer, a good thing, just “non-specific inflammation”

With a new doctor in the mix of there are new tests to be performed, some blood work and a capsule endoscopy. Also, an in person visit is to be arranged to review the results and any proposed treatments. No dates yet, but his admin person will get this lined up ASAP

The radiation doctor, Dr Dubey, has requested that no strong biological be used to treat the Crohn’s while treating active Lymphoma..

The concern is that the biologic might interfere with the cancer radiation treatment. Dr. Shaffer will consult with both the radiologist and oncologist but it seems likely they will recommend proceeding with a product called Entyvio. Apparently, this product is more “gut specific” and has a lower risk for causing or worsening Lymphoma.

Another “new” thing is being tried to help with the pain issue, Noratriptoline. This drug seems to have quite a few different uses and in this case it’s to help with neuropathic pain. It takes several weeks before any results may be noticed and an increased dosage may also be required. So, not an instant kind of thing like Tylenol, so we will see how it goes.

Input from the editor alias Shirley:

Dr Oladini, the primary care physician, has been in regular contact with us regarding the drugs for pain control. This past week he said it was “ inhuman” to leave Garry in such severe pain for this length of time and he has sent in repeated, urgent requests for the Chronic Pain Team to assess Garry. Similar requests have been sent by Dr Moltzan, the Oncologist, and by Dr Hyun.

Dr Oladini advised Garry to go to SBGH ER if the pain worsened and to refuse to leave until they provided an alternate option that would be effective. Dr Shaffer concurred with that directive.

As Garry has difficulty walking the block from the parking structure to HSC CancerCare, I will be driving him for the next 18 sessions.

We have been so thankful for the support, prayers, and encouragement from our Oasis Church family. Other than medical appointments, that is the one thing we refuse to give up on attending. It’s so good for us to be in a place “where it’s okay not to be okay”.

In spite of everything, we have that peace that passes understanding as we lean on God for strength and endurance, and as we are supported by the steadfast prayers of family and friends.

We are so thankful for each of you as we continue our journey.