Dans Recovery

My name is Dan, how is everyone. I’d like to thank you for takin the time to read about myself. Im fundraising for myself but really for my family. I have severe Crohn’s disease that unfortunately has impacted my life in multiple ways and has also caused issues among my family. 

The hard road I’m on started in 2009 with a relatively uneventful bowel resection when the medication I was on stopped working and I had severe structuring, or narrowing of the terminal ileum, last part of my small intestine. I recovered with a 2 week hospital stay at UPMC Presby under the care of Dr. Andrew Watson and went home on Remicade.

The remicade worked for years and from 2010-2015 were the non sick years of my life. Then a volcano erupted and spewed venom and pain onto my body for the next few years. I was always having flare ups and things weren’t going well at all. I was sick and I lost my insurance so I could no longer afford to be on Remicade. Which is an infusion medicine done with Iv every 4 weeks instead of pills. So that’s when the bills started to pile up. 

From 2015-2017 I was in and out of Presby until Dr Watson said a 2nd surgery was needed and I would need a temporary ileostomy to give my bowels rest. The day came and he performed the resection with ileostomy.  It took me a month to get out of the hospital because of complications with infections in my midline incision from the surgery. I went home with a Picc line and on TPN nutrition 12 hrs a day thru the line and packed my own wounds until they healed. 

6 months later my bowels having rested those 6 months a reversal surgery was scheduled to get rid of the bag and reconnect me. The surgery was done and I was put on a different biological called Humira. A month or 2 passed but was back with severe stomach pain. Things weren’t taking with the meds so inflammation n angry was what was going on inside of me. I made it 6 months and Dr Watson broke devastating news a 3rd resection was needed and it hadn’t quite been a year. I thought 3 major surgeries in a years time what is this gonna do to me. I said a prayer and we scheduled my 4th overall resection for July 2018.

So we did the surgery, I tried my best to stay positive but that’s when my mental health started to decline and get the best of me. Depression creeped in I lost 30 lbs with the surgery and I was no longer myself.

I then developed antibodies to the Humira so couldn’t take that medication so now my disease was untreated and I just tried to live my life. Pain and my depression and the mounting bills from not being able to work and denied for temporary disability hurt me bad.

The 2020 hit and I was having flare-ups so often half the year I spent inside a hospital room until my GI MD, Dr David Binion said I’ve suffered from the Crohn’s I’ve suffered from chronic pain and my body going numb from the pressure with all the weight loss that I would need a permanent ileostomy bag next time. I was so down about that I remember that I knew I needed something to change. So when the summer of 2021 came and I started developing abscesses in my abdominal cavity that made me scream and had to get surgically cut open and scraped and the first EC fistula appeared in my scar I knew the time had come. A fistula is an abnormal tunnel from one organ to another but in my case it was a tunnel from my small bowel to the surface of my abdomen. Eventually I had 4 fistulas that bowel and bile would pour out of the openings and I would do my best to bandage them and catch everything but it was bad and needed surgical intervention.

I had the fistulas wreak havoc on me all summer until Dr Brian Zuckerbraun, head of surgery at UPMC Presbyterian said he would be able to perforce surgery. Fistula repair surgery is very tricky and he was the only Dr in the hospital that had the skill to do so. We scheduled the operation for Nov 8 2021 to repair the 4 fistulas and resection of the diseased portion of the small bowel. Surgery number 5. I went home after 2 weeks and an fistula reappeared. Stool and bile would pour outta my stomach again and the pain was unbelievable and so I was readmitted and had been in the hospital ever since then with the 6th surgery being performed, given a permanent ileostomy bag and have a PIccline with TPN nutrition again and the current issue is short gut syndrome as we speak. 

I’ve lost 50 lbs this time around and am just trying to make it home to see what my future now holds. 

The birthdays I’ve missed, the holidays I was in the hospital, the times where the family went out but I was too sick to go see too numerous to count.I was given and ileostomy bag this time around so between many complications, the medication and the supplies I will need indefinitely for the ostomy, I just fear will forever keep me in debt. I do not know yet what the bill will be when I am discharged but I’m sure I can’t afford a fraction of it. I have also found out since I have been months in here that my pipes burst at home and ruined my living room and bathroom. I’m ready to give up and this almost took my life and I am scared it will and leave my family my medical bills.

If you or someone you know could help me, my family and kids get right I would forever be thankful and look forward to pay it forward when I get past all my sickness. Thanks god bless anything you feel you can help with! Prayers, meals, donations, I thank you and will forever be grateful.