Crohn's manifests itself in different people in very different ways. I never really had issues with what I ate, except for nuts and raw veggies. It seemed that no matter how much I chewed them, they would cause an obstruction. Some people cannot eat anything spicy, fried, or raw. I never had those issues, except with raw veggies, like I said. My biggest symptom is fatigue and pain from all of the intestinal ulcers.
It is common to do a little experimentation after surgery. That is how we learn. Some people can tolerate anything after surgery while others have problems and can tolerate very little. Weight loss is achieved during the short weight loss phase through meal volume control. The two operative words here are short and volume. So if you want to maximize your weight loss during this phase, you need to adhere to the program guidelines. I slid into the maintenance phase at 7 months.
So, I have promised to share my story with anyone who is interested. I’m not simply a bariatric surgery patient. Feel free to ask questions about what I have gone through. I am not shy about talking about my travails and have lots of experience with surgery in general. The photos I am sharing may be disturbing to some people. I am scarred and have an ileostomy. If you are squeamish, you may want to skip the photos.
Here we go… Get your popcorn, this is a very long post.
My name is Andy. I turned 52 in early July. I am single and live alone with my dog. I’ve been heavy most of my life. But, my journey is about my chronic illness and the effects it has had on me and my body.
I have Crohn’s Disease. I started having symptoms when I was 15. It got really bad when I was in the Navy, but it was in 1990 that I was first hospitalized because of it. I was, at first, diagnosed with ulcerative colitis and started on medication. This seemed to help for a while, but it kept getting worse. In 1995, when my doctor said I had to start taking Prednisone again, I opted to have a radical surgery to “cure” me by removing the organ of choice for this autoimmune disease. On April 20, 1995, I had the first of three major abdominal surgeries at Northwestern University Hospital, in Illinois. I had my entire large intestine removed and an internal pouch was made out of my small intestine to take the place of my large intestine. The surgery took almost 12 hours to complete. It was done open incision; laparoscopic surgery of this type was not perfected until the early 2000s. (My youngest brother had this exact surgery performed in 2012 laparoscopically. Crohn’s disease runs in my family.) This pouch was connected to the exit and I had a loop ileostomy for three months while the internal pouch healed. Yes, I pooped into a bag hanging from my stomach for three months back then. Then, after the three months, I went back in for another surgery where they closed the ileostomy and dropped my intestine back inside. Things went well for a couple of years, then I got sick again.
I moved to California and started a new job in 2002. When I found a new gastroenterologist in southern California, he did some tests and said I did not have ulcerative colitis, but Crohn’s Disease. (The difference between these two irritable bowel diseases is ulcerative colitis only attacks the large intestine, but Crohn’s disease can attack any part of the digestive system.) This doctor started me on an infusion medication called Remicade. This was the first medication that ever really worked. I took it for about 14 years until I developed antibodies to it. I kept taking it even though it was not working because the doctor never had me tested for antibodies.
In 2014, I moved to Idaho. I found my current gastroenterologist, who is the best doctor I have ever had. He put me on Humira. This is a self-injectable medication that also worked for a while, this time about two years. When he saw that the Humira was no longer working, he ordered a blood test that would see if I had antibodies to it. This is when I found out that I had antibodies to both Humira and my previous medication, Remicade. I was then switched to Cimzia, which never worked. I just keep getting sicker and sicker. (The worst part of having Crohn’s disease is there are no outward signs that you are sick. I looked fine but felt like crap all the time. No one at work believed I was sick)
One of the side effects of my surgery in 1995 was scar tissue in my small intestines where the ileostomy was. Because of this, I periodically have small bowel obstructions that usually require hospitalization. To date, I have had 17 small bowel obstructions. These usually clear themselves while I am in the hospital, by not eating anything (NPO) and having an NG (Naso-gastral) tube inserted up my nose and down into my stomach, to remove any contents using suction.
Let’s jump ahead to last year – May 2017. I had yet another small bowel obstruction. I was hospitalized as usual, but this time it did not clear. I had been in the hospital for two weeks and then they decided I needed surgery to clear the blockage. When I was talking to the surgeon before the surgery, he said I had a 90% chance that I would come out of surgery with a permanent ileostomy. This was not the case. In this second major open abdominal surgery, the surgeon was able to remove scar tissue strictures from the outside of my small intestine and they immediately inflated and the blockage passed. I got lucky. The surgeon told me that if I had another small bowel obstruction, he would be forced to remove my internal pouch and give me a permanent ileostomy.
In August of 2017, this is exactly what happened. A bit after 4 am on August 21, 2017 (yes, the day of the total solar eclipse – I’ll say more about this in a minute), I went to the emergency room and was admitted about 8:30 am for yet another small bowel obstruction. I had been up all night throwing up and getting sicker, so I was exhausted by the time I got to my room. About 10 am, the nurse came in and asked if I wanted to go out to the parking lot and watch the eclipse. I was so sick and exhausted that I said no and slept through the entire event. (I live in one of the areas where people came to view the event (eastern Idaho) and I missed the entire thing because of this damn disease…) When the surgeon came in later that day, he said that he had scheduled me for surgery on Wednesday, August 23, 2017,, for the removal of my badly diseased internal pouch and give me a permanent end ileostomy. So, again, I poop into a bag.
So, on August 23, 2017, I had the third major open abdominal surgery. One thing to note here is this was the third time I had been opened up in the same place – from just above my belly button, vertically down into my groin. My wound had barely healed from the surgery in May and the surgeon was cutting me open again. This ended up being a long recovery.
There were two issues with this surgery: the first was the placement of the ileostomy. The surgeon placed it in the scar tissue from my ileostomy that I had back in 1995. This has caused issues with the seal on my bag.
The second issue was the surgical wound. While I got much better since the badly diseased part of my small intestine was surgically removed, the wound did not want to heal. I was in the hospital for over three weeks and eventually sent home on with a wound vac. This device keeps constant suction on the wound and removes any blood and body fluids from the wound, preventing infection and speeding healing. The problem with my wound this time is it was not closed properly and it took over four months for it to close enough for me to stop using the wound vac. I was able to finally return to work in January of 2018.
Back to my gastroenterologist. I went to see him in Februar 2018 for a checkup and an intestinal scope, called a sigmoidoscopy. This is basically the same as a colonoscopy, but they use a much smaller device. It is about the same size as an endoscope. When this procedure was over, he said to me that I needed to lose weight. (He basically says this every time I see him, about every three months) This time, I was sick of hearing about it so I asked him for a referral to see a dietician to help me with my weight and my eating.
About a month later, I get an unexpected call from a bariatric surgeon’s office near where I live and was invited to a seminar. I went and after the presentation, I went to ask the surgeon a couple of questions about whether or not I was a candidate based on my surgeries. She said that it was not out of the question, but she would need me to make an appointment to be sure. I was seen in late March 2018. When I met with the surgeon, she asked me to lift my shirt and show her my abdomen. She took one look at my scars and said she could do nothing for me. She referred me to a bariatric surgeon at the University of Utah, who I met with on June 29, 2018. Because I had already started the journey, according to my insurance, back in March, the doctor placed me on the fast-track to get everything done. Since June 29th, I have had 14 appointments in Salt Lake City, about 210 miles south of where I live.
During this first appointment, I also talked to the bariatric surgeon about my other issues and he referred me to a colo-rectal surgeon, also at U of U. I met with him on July 20, 2018. We discussed revision surgery on the placement of my ileostomy and the removal of internal scar tissue around my small intestines on the left side of my abdomen. He said that these things need to be done and that he would coordinate with the bariatric surgeon. The bariatric surgeon was more hesitant and needed much convincing. I finally was able to talk him into performing both sets of procedures during the same operating room visit. I was finally approved for everything and am scheduled for surgery on September 6, 2018.
In early August of this year, I was finally approved for yet another Crohn’s medication – Stelara. This, by the way, is the second most expensive medication in the United States, behind only Harvoni (which is used for hepatitis C). Stelara costs about $20,000 per dose and I have to inject one dose every two months. So far, it is working.
So, to recap – on September 6, 2018, I will be having a vertical sleeve gastrectomy, performed laparoscopically (prepped for open, but he is going to attempt laparoscopically first) by Dr. Volckmann as the first procedure performed. While I am still under and after Dr. Volckmann finishes, Dr. Pickron will come in and perform a revision on the location of my permanent end ileostomy and attempt to remove as much scar tissue from my small intestines as he can. This will be performed open, through the same incision location and scar tissue that has been used now three previous times.
I am also posting photos of what I look like without clothing, with privates blocked out. Since my surgery on August 23, 2018, only my doctors have seen me this way. And the last photo is of my "surgery" haircut. I hate to deal with my hair in the hospital so I just cut it all off before I go in.
If you have made it to this point, thank you for reading my story. I have never written it all down before and as such, have never shared everything with anyone.
I don’t mean to be a “Debbie Downer” but can I say that I am tired of logging on and hearing about cheating and going back to eating whatever you want, I haven’t even had surgery yet and I already feel like a failure when I read posts like this. I love hearing inspiring stories and how people have overcome their demons, is there a thread like that 😩
My quiz was written and done at the doctor's office. Then, I had an oral-board of sorts where the NUT asked even more questions to make sure I was ready.
Thank you. I'm glad I've been able to help a little.
I have a co-worker with Crohn's. He is extremely thin and very careful with whatever he eats. I don't know anything about his medications. We don't know each other that well. But you've helped me to understand part of it. I appreciate it.
Oh, man, I am so sorry that you've had to go through all of this. It really makes me appreciate how much I take for granted. You're such a nice guy and very positive; its a real credit to your character than you haven't become angry and bitter. Your story is inspirational. Thank you for sharing and best wishes on your surgery and a smooth recovery.
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