Luke | CaringBridge

Journal entry by Angela Stacy — Oct 4, 2020

September 30, 2020

This morning as I sat in Luke's hospital room, I opened up my daily devotional by Cherie Hill entitled "He Whispers Your Name". As always, today's reading seemed fitting. It says:

The first thing you should know about faith is that it won't answer all of your questions in life, and it won't solve all of your problems either. Faith is about trust, not about being certain. Faith gives you what you need to take one more step in the darkness. By the light I have given you through My Word. I'm not asking you to walk in blind faith. I'm asking you to believe in who I AM and trust in what I've promised.

The strength or weakness of your faith is directly proportional to your belief in what I've promised through My Word. Faith has nothing to do with feelings. It should never be based on what you see. If you're walking by sight, and not by faith, you're not trusting in Me. If there is no trust, your heart will be restless instead of resting in Me. Don't miss out on the blessings that are just beyond your fears. I've promised that I'll never leave you. There is nothing to fear. If I AM for you, nothing can be against you.

Though doubt knocks, let your faith answer. Trust and rest in Me, and I will do more than you could think possible. It is your faith that moves My heart and My hand.

Psalm 119:42 (NIV) I trust in Your Word.

Starting over or new beginnings. Do they carry the same meaning? Or, perhaps opposite meaning? I believe it depends on one's perception. Pessimism or optimism? Glass half empty or half full? Fear or Faith? Hopeless or Hopeful? That's where our family is at the current time. Some of us see it as starting the process from the beginning AGAIN (which is understandable). I refuse to see it that way. I see it as a new beginning. As I shared with Luke during a long conversation recently; "As long as I have faith, I have hope and as long as I have breath I will keep fighting for your health." I understand why he is pessimistic; has a glass half empty attitude, filled with fear and feeling hopeless. After all, he has been dealt blow after blow. I don't know the purpose behind why he has endured all that he has; however I do know that I have a God that is bigger and is capable of healing him.

This entry is long but this journey has been as well. I hope you will take the time to read to the end. It will give you a glimpse of what Luke's life has been like over the past 2+ years.

I've tried to update Caringbridge multiple times but each time my heart hasn't been in the right place to share. To say I haven't been frustrated and angry with God at times would be a lie. I've included the entries I began but never completed . As you will see, there is a draft entry within the following draft entry. Many drafts were deleted. I later decided I needed to keep the remaining draft entries as a reminder of where my heart and head were at that time.

October 25, 2018

I've struggled with penning this update because quite frankly I can't believe the current situation we are finding ourselves in with Luke's health. My last journal entry was December 12, 2014. Life since then has not been "great" for Luke with respect to his health but there have been no major issues, so we thought, until now.

Earlier this year, Luke made the decision to transition from pediatric care to adult care. At the recommendation of others, Luke decided to see Dr. Bo Shen at the Cleveland Clinic. He was scheduled for an initial consultation on August 28th. In mid-August Luke began having health issues related to his Ulcerative Colitis. He was experiencing severe abdominal pain, nausea, extreme fatigue, loss of appetite, weight loss and fecal incontinence. Because of these issues, Luke became housebound. I called Dr. Shen's office to inform them that Luke's appointment needed to be more than a consultation. We were desperate for help.

When we met with Dr. Shen for the first time, he asked Luke, "What has been your biggest problem since your j pouch surgery?" Luke's response was, "I've never really felt good. I just tolerate my life." Dr. Shen's response was a promise to Luke that he would make him better; however, making him better required some procedures and investigation. Dr. Shen indicated that there were some possible issues causing Luke's health problems. Luke could have a leak in his pouch, his digestive system could be malfunctioning, he may have an obstruction or he could be experiencing "floppy" pouch.

The first procedure Dr. Shen ordered was an MRI. While we have never had a discussion with anyone regarding the results of the MRI, the report published on MyChart indicates "an atypical anatomic configuration of the pouch with inlet seen along the posterior left aspect of the pouch". If you can decipher all of that, please let me know. PLEASE REMEMBER THIS PORTION OF THE POST AS YOU CONTINUE TO READ.

After the MRI, Luke had an Anorectal Manometry procedure. This procedure measures how well the rectum and anal sphincter are working. As a result of that procedure Dr. Shen ordered 10 consecutive Biofeedback Therapy sessions. This therapy provides auditory feedback to help retrain the pelvic floor and anal sphincter. There was some controversy between the therapists and Dr. Shen as to whether or not this was the appropriate therapy for Luke. After some conversation between the therapists and Dr. Shen, the therapy was shortened to five sessions. At the conclusion of the 2nd session, Luke was told that his muscle coordination was fine and it could not be improved any further.

On October 26th Luke had a defocography. This test is done in the radiology department. During this test, an x-ray video is taken that shows how well the rectum is functioning, how much stool the rectum can hold and how well it holds and releases stool. To perform this procedure, a small amount of liquid barium was released into Luke's j pouch. The results of this procedure showed that the stool evacuation of the pouch is normal. However, the test also showed that his small intestine has fallen behind his j pouch. It now rests in the presacral space which is inside the pelvis, behind the rectum and in front of the coccyx and sacrum. In layman terms - it's not where it should be.

On October 27th Luke had a repeat pouchoscopy. The results showed chronic pouchitis (inflammation of the pouch). During our consultation with Dr. Shen, he showed us the current position of Luke's pouch.

FEBRUARY 12, 2020 - CONTINUATION OF POST

Luke's health continued to decline, and on November 6th we met with Dr. Shen to discuss other treatment options. That appointment did not end well and Dr. Shen referred Luke to Dr. Hull, a colorectal surgeon. On December 31, 2018 (yes New Year's Eve) Dr. Hull performed a pouchoscopy so she could see, firsthand, what Luke's pouch looked like. Her findings included:

- Pouch was full of undigested vegetable matter;
- Shape of J pouch is not typical (a J pouch is usually constructed long and narrow to allow stool to flow down and out the rectum. Luke's pouch was constructed short and wide and her opinion was that the shape of the pouch could be preventing complete evacuation of stool thus potentially causing some of Luke's issues);
- Luke could not relax his rectal muscles when the probe was inserted for the pouchoscopy indicating issues with his pelvic floor muscles.

Dr. Hull's recommendation for the time being was for Luke to continue the biofeedback sessions. Luke had a difficult time believing this was his issue so he pushed her recommendation aside for a long time.

During the months of August and September 2019, Luke completed 5 biofeedback therapy sessions with the same therapist so progress could be recorded by the same person. After five sessions, it was determined that Luke was using his pelvic floor muscles satisfactorily and no further therapy sessions were necessary.

SEPTEMBER 28, 2020

Once Biofeedback Therapy was completed, a follow-up appointment was made with Dr. Hull on November 26th. Below is some of her post-visit notes:

Fecal incontinence and incomplete pouch emptying (this is the main issue and I think he avoids eating due to his defecation problem). He has had physical therapy with Cameron and I think that his paradox is better. There has been a question of afferent limb syndrome, but I am not sure that is what is going on. At EUA it was open and easily we went well into afferent limb. I also am not sure I see this on his defo testing.

I had recommended a stoma but he has not been ready and does not want to speak to anyone who has one

Losing weight (he looks chronically ill to me and is thinner than when I saw him just under a year ago) and has moved in with parents due to his inability to function. His parents are rightfully worried what will happen to him.

I am not sure if redo pouch will help this

I think his relaxation is better when doing a digital

I always am concerned this is a structural issue that we cannot detect when he bears down since the course after pouch construction was not smooth. Also today when he was able to relax his pelvic floor after defecating, I almost felt like the anterior wall of the IPAA drifted back over the outlet but it was not definitive. That would support incomplete emptying but he feels he empties completely.

He definitely is not thriving and losing more weight. I do not think this is a medical issue, but he would like an appointment with IBD GI here since Dr Shen is leaving and I support this and will set up with Dr Qazi. I sent a note to him

I discussed options

--I think he needs a stoma but he is not ready for this

--redo pouch which I do not know if it will improve him. I would do stoma before to see if we can get him healthier as he is not in best nutritional shape for a redo surgery

--Also discussed K pouch which I had discussed before . We discussed that would be a bridge burner to using his anus again. Went over function and anticipated outcome.

It felt as if his issues were a guessing game at the end of each appointment.

Dr. Shen left the Cleveland Clinic so Dr. Hull referred Luke to Dr. Taha Qazi who took his place. On January 10th Luke had his first appointment with Dr. Qazi. Prior to the appointment he had reviewed Luke's history and had had many conversations with Dr. Hull. He noted , in part, the following :

In brief, Mr. Stacy is a 22 y/o man with a medical history of UC s/p IPAA. His course appears to be a complicated by mechanical complication related to the pouch resulting in functional obstructive symptoms. He has been on long-term antibiotics with limited response and has been seen by Dr. Hull for the evaluation of an ileostomy, which he prefers to avoid. Considering his prior lack of response to Cipro, we will plan for a cycle of another antibiotic. Of note, his last pouchoscopy in 10/2018 showed afferent limb angulation but with evidence of mucosal inflammation, confirming this there was evidence of ongoing chronic, active enteritis on biopsy.

Plan:

I am in agreement that his symptoms appear to be most in line with a mechanical dysfunction of the pouch. Nevertheless, he has been losing weight and there is concern for a potential secondary etiology. We will plan to treat with a course of Augmentin as a means to cycle antibiotics. We will obtain labs and plan to restage his disease with a luminal evaluation. Should be confirm active enteritis or concern for Crohn's disease, we can consider escalation to biologic therapy as noted above.

His most troublesome symptom continue to be fatigue and will plan on obtaining a further evaluation for medical fatigue. He reports no sleep related issue or active symptoms of mood disorder per a PHQ-2 screen. Additional etiologies to consider is/are potential adrenal insufficiency vs. Hypotestosteronism. As such, we will refer to endocrinology. If workup by the specialist is unrevealing, we will consider evaluation with sleep study and/or sleep diary and continue to re-engage in discussion regarding a mental health workup.

Dr. Qazi referred Luke to Dr. Skugor, an Endocrinologist. On January 29th, Dan and I took Luke to see Dr. Skugor. A complete evaluation was done and lab tests were ordered. Dr. Skugor tested for Thyroid, Adrenal and Testosterone deficiencies. All labs came back normal.

On February 11th, Dr. Qazi did a pouchoscopy on Luke so he could get a first hand look at Luke's pouch. The pouchoscopy showed mild localized inflammation. Diagnosis was mild pouchitis. Dr. Qazi ordered a round of antibiotics to help with Luke's symptoms.

Before anything further could be done, COVID 19 hit and things were put on hold. Luke did have a virtual visit with Dr. Qazi on April 10th. Dr. Qazi's plan was to continue a cycle of different antibiotics to help with Luke's symptoms. His notes state that it is his impression that Luke's symptoms are "likely attributed to mechanical process and a surgical intervention is likely best".

I'm not sure exactly how it transpired at this point, but at the end of August I called to make an appointment for Luke with Dr. Hull. He was also in need of more antibiotics but Dr. Qazi wanted to see him first. Fortunately we were able to make appointments with both doctors for the same day.

On September 1st, Luke first saw Dr. Qazi. This was a routine examination. It was decided that Luke would continue the cycle of antibiotics adding a different one to the mix.

We then went to see Dr. Hull. This is a portion of her notes:

Assessment:

Plan/recommendations:

here with his mother - She feels he is better but still has more bad days than good and seems to sleep alot

I spent a long time going over options

I emphasized that I cannot guarantee that a redo pouch will improve his situation as I am not convinced listening to his symptoms that this is a structural problem. He has an abnormal defecation pattern that is very intermittent.

he also states on the augmentin he seems to do much better with less pain.

He is very thin and seems to eat for a couple of days and then cannot eat as will have explosive stools. Unclear why this is.

WHAT I THINK REALLY HAPPENS IS THAT HE GETS BUILDUP OF PRESSURE IN HIS POUCH WHICH DOES NOT EMPTY WELL MAYBE FROM PELVIC FLOOR ISSUES AND THEN HAS EXPLOSIVE STOOL.

I suggested a G tube which he was very much against.

He wanted me to redo the pouch straight away==However we discussed that he is malnourished and the goal is to redo the pouch when he is in his best physical shape to heal the area. Right now he is severely malnourished.

After extensive discussion of well over 40 minutes of back and forth, what we will plan is ileostomy (goal is laparoscopic approach). If he does not eat then would do PEG in future (he is just against a feeding tube for unclear reasons except he does not want something else on his body)

May have difficulty finding a suitable spot on his abdomen. He is very thin and has some previous scarring. His abdomen is more like that of a pre teen--very very thin and no fat with hips sticking out.

again emphasized and went in detail that I do not know if redo pouch will make him have better function.

By the end of the appointment, Luke was on the surgery schedule for Monday September 28th. He was also scheduled for all necessary pre-op appointments.

Dan, Luke and I had a long conversation about our fears of Luke going through this surgery again. Luke expressed that he felt pressured into having ileostomy surgery. We talked for hours about what this disease has done to Luke physically, emotionally and mentally. I believe it was therapeutic for Luke to hear himself speak about the effects everything has had on him and his fear of going through it again.

On Friday September 25th Dan took Luke back to Cleveland Clinic. He saw Crina, Dr. Hull's Nurse Practitioner. From there he met with the Stoma Nurses. He was tatted for his stoma location. This took some time due to scarring from previous surgeries. They also wanted to make sure the placement of the stoma would not cause issues for him when applying his ostomy appliances to his abdomen. He then went to the lab for some necessary bloodwork. He finished the day with a COVID 19 test.

This past Monday, Luke and I arrived at Cleveland Clinic at 9:00 A.M. Due to COVID 19, only one designated visitor is permitted. At 10:57 A.M. Luke was taken to the OR and I went back to wait in the Colorectal Surgery Family Lounge. At 11:35 A.M. I received word that Luke's surgery had begun. At 12:15 P.M. , I was taken to the Consult Room to meet with Dr. Hull.

It seemed like forever waiting for Dr. Hull to come into the room. I was nervous to hear the news she was going to give. Part of Luke's hesitation with having this surgery was the fear of finding out the ileostomy was permanent and he would live with an ostomy bag forever. Because Dr. Hull was unsure why Luke is having issues, she made it very clear that a permanent ostomy bag was a possibility. Knowing Luke's fear, I prayed to the LORD that during the surgery Dr. Hull would discover something wrong with his j pouch that could explain his health issues and I wanted it to be fixable. I was desperate for Luke to get some good news.

During the surgery, Dr. Hull discovered that Luke's j pouch is laying on his pelvis. Not only is it not in it's proper place but it is also twisted. She didn't want to poke and prod too much for fear of puncturing the pouch which would have led to additional issues. Hallelujah Jesus!!! No parent wants to hear that there is something wrong with her child; however this was music to my ears. Dr. Hull went on to say that none of the testing Luke had been through revealed what she saw during surgery.

Luke has been rockin' his recovery. He was discharged on Wednesday and he continues to heal at home. The plan is for him to gain some weight and strength so he can endure the next surgery. The next surgery is going to be extensive. Dr. Hull will have to open Luke up to make sure the placement of the j pouch is precise. At this point the condition of Luke's j pouch is good and she thinks she can use it rather than having to redo it.

You are now up to date on what has transpired in our lives, especially Luke's, over the past 2+ years.

Today's devotional from "He Whispers Your Name" by Cherie Hill:

I never change. I'm always the same-your Rock. I cannot be moved and neither should you. Your faith should be strong and unmovable when you're trusting in Me at all times, regardless of your circumstances.

You can thank Me because I AM good all the time. I pour out My mercy and consume you with My grace. In your praises you can have peace and gladness, knowing that I will render justice and rescue you from the fear of defeat.

There is nothing too difficult for Me. There is nothing I can't do-no miracle that I can't perform in your life. I AM all you need and everything is under My authority, so there is nothing to fear no matter what you must face in life. Although there are many reasons to give thanks to Me and praise My name, I want you to find joy and gladness in the most basic thing: that I AM God...all-loving, merciful and mighty.

I continue to hold onto Exodus 14:14 - The LORD will fight for you; you need only to be still.

Blessings,

Angela

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