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macadamia

Gastric Sleeve Patients
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  1. Thanks
    macadamia reacted to Bari_KS in There is so much more about me than just weight-loss surgery... Very Long!   
    I salute to your resiliency. What a stoic, positive and strong man you are. Good luck and successful surgery! I wish i could shake your hand and say THANK YOU FOR YOUR SERVICE in person.

    Looking forward to my VSG!


  2. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    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.














  3. Like
    macadamia reacted to GreenTealael in Assumptions   
    They hurt your feelings...

  4. Like
    macadamia reacted to FluffyChix in Assumptions   
    So far no one has said quit losing weight. I'mI'm not too thin until someone has to carry me around in a back pack. assuming people still think, "Hey fatass, you better not be looking at those french fries with desire in your eyes. Keep losing. You're still in the overweight category!" No offense to anyone here who has in the past or is presently being carried around in a backpack due to any ana probs or degenerative diseases. Sorry to Stephen Hawkins as well and anyone with mobility issues. In fact, I should just probably erase this post.
  5. Like
    macadamia reacted to sillykitty in Assumptions   
    And I definitely did it for vanity
  6. Like
    macadamia reacted to GreenTealael in Assumptions   
    I definitely did it for my healthy
  7. Thanks
    macadamia reacted to sillykitty in Assumptions   
    I think it is interesting that many people who know I have had WLS assume that I am done losing weight. It seems to come from a good place. They think I look great, and figure why would I lose more.
  8. Thanks
    macadamia reacted to 336Mike in Assumptions   
    Where to begin...people have assumed I'm sick, that I lost weight because I'm no longer married, that I'm too active (like your walking example), that I need to eat more, that I should have some cookies/ cakes/candies because a litte won't hurt, that I'm too thin, that I need to stop losing (which I have), etc, etc.

    The reality is that many have never struggled with weight or they don't care about their weight. And they don't see the health problems I've overcome by losing weight. They can't relate.

    So, I'm doing me and living my best life. Sometimes I get it wrong and that's ok I learn and move forward. I'm not trying to impress or be better than anyone else. All I can try to do is be a better me than I was the day before. And as for the assumptions, they can get aggravating but I try to laugh most of it off.

    HW = 360
    SW = 292
    GW = 220 reached 3/7/18
    CW = 204 @ 6'5"
    156 pounds lost! [emoji106]


  9. Thanks
    macadamia reacted to Orchids&Dragons in Assumptions   
    Well, there's always the assumption that WLS is driven by vanity, not health. Whereas I've found for most people it's about long-term health and looking better is just a great perk.
  10. Thanks
    macadamia reacted to GreenTealael in Assumptions   
    I've noticed that people assume all kinds of things about me now. I've mentioned needing to walk to a place because I have walked long distance in a few days, and people assume it's specifically for lossing more weight.
    I have to explain the benefits of walking beyond weight loss for anyone to be satisfied with my reasons. So disturbing.
    People constantly tell me now that I don't need to lose more weight. Many don't know I had WLS and must be thinking I'm trying really hard. I'm not.
    I think people assume I have a new found eating disorder. Not present.
    Debatable but i'm not specifically actively trying for more weight loss (fat loss, muscle growth yes), I'm just letting my body find it's range. I comfortable where I am, I can stay here or go lower ,my body will pick but I'm not making an effort to stop lossing either.
    I think people are obsessed with my weight loss and think I am also. I'm not. It's so weird, it's all anyone around me wants to talk about.
    What assumptions have you found/do you believe are being made about you? Are they spot on or way off?
  11. Thanks
    macadamia reacted to Wanda247 in There is so much more about me than just weight-loss surgery... Very Long!   
    Your life story is so touching...you are so brave and very positive. I know you will do good, you have a lot of support here.

    Please keep us posted buddy ((hugs))
  12. Thanks
    macadamia reacted to Frmamomzeyez in There is so much more about me than just weight-loss surgery... Very Long!   
    Wow... you are an inspiration and you are definitely a fighter. Sending good wishes to you on your surgery tomorrow.
  13. Thanks
    macadamia reacted to Oct517 in There is so much more about me than just weight-loss surgery... Very Long!   
    I wish you the absolute best with your surgery tomorrow! I hope you have speedy recovery!

    Sent from my SM-G960U using BariatricPal mobile app


  14. Thanks
    macadamia reacted to LynnV1964 in There is so much more about me than just weight-loss surgery... Very Long!   
    What a mess you’ve been thru! Your resilience will carry you thru tomorrow and beyond! Good luck!
  15. Thanks
    macadamia reacted to Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    Wow! What a rough journey!
    You deserve all of the health and happiness that is coming your way!
    Rooting for you!
    The first 2 weeks after surgery are usually the worst, not trying to be a downer. Just want you to be prepared and know that it only gets better from here!
  16. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    I weighed in at the doctor's office and I'm down to 345.1! That makes 38.8 pounds lost since June 29, 2018. I'm uploading a screenshot of the trend from the LoseIt! app. As you can see, I had a big uptick in weight in late July and mid-August and it took a bit to re-lose that same weight again.

  17. Like
    macadamia got a reaction from Wanda247 in There is so much more about me than just weight-loss surgery... Very Long!   
    I suppose so, thank you for saying so. There is nothing I can really do about it, so I choose to be mostly positive. I still get cranky when I am either very tired or not feeling well. Except for the three small bowel obstructions I have had since I had the surgery last August, I've felt pretty well.

    (-:
  18. Like
    macadamia got a reaction from Wanda247 in There is so much more about me than just weight-loss surgery... Very Long!   
    I made it! I’m at my appointment, waiting for the ostomy nurse to come and mark placement of my new stoma location.
  19. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    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.














  20. Like
    macadamia got a reaction from Christabelle in *** September 2018 Sleevers ***   
    I'm scheduled for 07:30 am tomorrow morning.
  21. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    I weighed in at the doctor's office and I'm down to 345.1! That makes 38.8 pounds lost since June 29, 2018. I'm uploading a screenshot of the trend from the LoseIt! app. As you can see, I had a big uptick in weight in late July and mid-August and it took a bit to re-lose that same weight again.

  22. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    Thank you! Prednisone is the worst drug I've ever had the misfortune of taking. If you look at the photos, all of the stretch marks are because of Prednisone. When it was first prescribed, I was on an ultra-high dose. I gained over 75 pounds in about three weeks. My skin never recovered. A couple of years later when the doctor said I needed to take it again, I said no way. That was when I opted for the first surgery back in 1995. It is the only drug that has ever made me rage. I was a mess when I was on it. Aside from the weight gain, I was so short-fused no one could stand to be around me. Once I stopped taking it, that all went away. IMHO, Prednisone is evil, plain and simple...

    As for the Keto diet, I've tried it and the high fat made me ill and gave me acne really bad. I'm basically doing a modified keto, modified Atkins, which is high Protein and low carb. It has helped so far.
  23. Like
    macadamia got a reaction from Christabelle in *** September 2018 Sleevers ***   
    I'm scheduled for 07:30 am tomorrow morning.
  24. Like
    macadamia got a reaction from Sleeved36 in There is so much more about me than just weight-loss surgery... Very Long!   
    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.














  25. Like
    macadamia got a reaction from Christabelle in There is so much more about me than just weight-loss surgery... Very Long!   
    Thank you! If the bariatric surgeon can do it laparoscopically, great! However, if he cannot, at least the skin he will be cutting through has never been cut through before. My upper abdomen is virgin when it comes to surgery. This will make for an easier recovery than the lower abdomen, where I have been opened three times prior and have a lot of scar tissue.

    And, the bariatric surgeon really does not want to do it open. He says it makes his job much more difficult. They have perfected the surgery to be done laparoscopically and the tools work much better when used that way. They do not work as well when they are not locked within a trocar

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