Svdlux23

I have not posted in ages and all was going good til yesterday. Went on my first long hike and ended it with major dumping syndrome. I mean bad news. I even got an extra added bonus of my extremeties going completely numb for about 15 minutes which sent me into a panic attack. Horrible experience.. So been resting today and eating cautiously.. I had not even eaten anything sweet or naughty before the horrid event.. all in all been happy and down 35 since 9/13

So my son, who is 13, asked me today what it's like when I am hungry. I said its the same as when you are hungry. My brain wants to eat a horse! But then i get my food and eat my few bites of whatever and get this sense of having to stop through discomfort not through mental satisfaction. I had to explain that the joy of eating is not there anymore. Like looking at yummy things is all good and my brain still says YAY.. but my body just says.. ya right. So this is the hardest thing for me. The mind bending fact that having a nice meal will never be. I mean I know we can eat whatever we want etc.. but the factors of sitting down to a nice dinner out or holiday meal.. its all gone in that way. My brain is depressed about the social factors of this surgery. My body is stoked to be down 25 pounds in 2 months ofcourse.. but i'm just hoping this is all newbie syndrome and my mental state will improve.

Just had to rant.

I got to wear my underwear and socks and wore my pajama bottoms after.

On 10/20/2018 at 3:18 PM, LynnV1964 said:

Major success.....went to my annual BP check up this week. BP 101/69!!! Of course my dr said no more meds!! Yay!!! And down 19 lbs since surgery 9/25.

Im on BP meds. how did they measure your bp while you are still on meds? Or did I miss something. I sooo want to get off mine.

14 hours ago, ellie123 said:

Update: wounded up in ER for Vomiting and dehydration. They obviously don’t know much about Bariatrics and doc and nurse were so unsympathetic! Pouch has been balled up since yesterday. Today I had nada to eat but threwup 4 times, just awful. They did an X-ray said I don’t lol blocked and gave me IV with Zophran and then Promethazine. I threw up while on their IV too. I refused pain meds cuz was so dizzy from anti nausea and did not want their strong stuff. They told me that’s all they can do for me and sent me home, where I continue to throw up. I NEED to be well! I have a mother son school date tomorrow (he’s been waiting a year for this!!), I have work in the morning! I have an international trip next week! Ughhhh, can’t beliebe I’m laid up like this...

Wow, So Sorry Ellie! Maybe you have some sort of bug? I hope you are better today.

On 10/10/2018 at 9:31 AM, nibble said:

@Frustr8 - yay, good for you! Ffeels so good, doesn't it, seeing the numbers go down? Those "little" victories are HUGE.

I am 4 weeks post op today and have lost 17 pounds total. Slow go last couple weeks but doctor said all is normal. Have lost 3 inches around my waist and an inch on my arms. I have also noticed alot of change in my face. So that makes it all worth while. Even if the scale is not moving the clothes are!

26 minutes ago, leeanna1309 said:

Its everything i tried 3 different Proteins and honestly they all gets tiring after just having that. im on liquids for 3 weeks. Im a mom so i still have to cook for the kids. Maybe its the not having someone to talk to that understands what im going through is making it so hard

I was suppose to be on liquids for a month. .l started on soft stuff week 2.. my body needed it. I was tired and had no energy. I eat what I want now mostly (no steaks yet obviously) and feel fine. Our mouth is a grinding machine so we are able to mush up food and grind our teeth as good as any blender. I just keep hydrated and don't eat too fast or too much. Maybe start with yogurt and soft stuff. We all have different plans but its more about how our bodies are working for us. Honestly, not even 3 weeks out and haven't had any issues since gas pain post surgery. Just don't overdo it. But makes you feel happier to have something in your mouth to chew for sure. I even had some salad last night and all was good.

44 minutes ago, Megan Sadler said:

😭😩😭😩😭😱 my boobs shrunk!!!! Wtf....they’re half the size of my. Bra and they filled it before..... I’ve been wearing no bra or wearing sports bras since the surgery but I’m going to something so I put them up and damn!!!!

My Fella is so concerned about this! i am not gonna be too sad if they shrink a bit.. too big at the moment.

On 9/27/2018 at 6:56 AM, Elizabeth C said:

Hi all! So I had the sleeve done recently. The first week I lost 20 lbs and was very happy. I just finished my second week and the scale has not moved at all. I am following the doctors orders, getting all my fluids and Protein. Granted I did very well the first week, it is a little discouraging. Anyone else experience this during their second week post op?

I am exactly the same! Sleeved 9/13 and haven't lost a pound in a week! First week and a half 16 pounds.. I can feel my clothes fit different thought.. but still.. its is hard to get on that scale and see no movement. But I know its impossible to not lose more weight as only taking in such small amounts of calories per day. I think our bodies are just going through a change of metabolism and it takes a while to get to the normal place we will be living in.

46.. sleeved 9/13.. lost 14 pounds so far but the scale has stopped the last few days.. dunno why but i know it will keep going. .

1 minute ago, Hungryman said:

I thought the pain was minimal you just need to walk and do more walking that is the key!!!! Just sore but no sharp pain...you can do it

Sent from my SM-G950U using BariatricPal mobile app

I agree 100%.. pain was not bad at all..ive had tattoos and childbirth .. this was a walk in the park!

6 hours ago, Avrilyn said:

I had the sleeve 9/13. Still dealing with the gas in my chest, shoulders and back. But otherwise moving around fine and getting my Vitamins and Protein. I lost 58 lbs pre surgery and 3 since. Very happy with my decision.

I had mine also on the 13th. Doing good so far with everything.. gas is finally subsided.. just feeling hungry! Its odd.. i am struggling getting in enough Water cus it seems such a steep hill to climb. Doing shakes and Jello and popsicles..just want to eat! But i know I cant. I think watching tv makes this all harder cus the commercials for food are constant! I never really noticed it before now!

I have told everyone for 2 reasons.. so they are aware I am going in for surgery.. as well as so they don't think something is wrong with me when I start drastically losing weight! I wouldn't want to have to have people think i have some illness and not feel comfortable about asking about it.

your phone should have a step counter or you can get an app for it!

5 hours ago, Ed_NW said:

Bugs the heck out of me to think they're just trying to make money off of me. The place where I did my sleep study lost my records so my insurance was trying to make me do a new sleep study as a prerequisite to getting my WLS. I think I found a way around it.

Ed

I did an at home one first and which was with this wrist monitor.. and they said that came back that i had mild sleep apnea.. HMMM.. then they made me do the in-house one this week. I agree think its a way to make money out of insurance as i have not had to pay a penny out of pocket for any of that. They got my insurance to approve before i did them.

That's good its worked for others.. i have no trouble sleeping though. I did the sleep study earlier this week and they gave me the cpap before i even did the study! Like I said I think its an insurance requirement issue.. ugh.

I just got a cpap machine and hate it. I don't have issues sleeping but my surgeon is making me use it for 90 days. I don't get it but its just not working for me at all. it was my 3rd night with it last night and i took it off after an hour. I guess this has something to do with insurance approval maybe? I got the nasal pillow too but can't stand wearing it..

Jeez, i read that back and feel awful.. i don't want to scare you.. she had a pik line in her arm that was the cause of the embolisms.. so not just from the stoma surgery.. It's just close to my heart and know how hard chrones can be..

xo

Oh and we are surgery twins!

Hi,

Your story brought back alot of memories for me.. my mom had chrones disease and went through a lot of the same things as you did. She was diagnosed in the late 80's and went through countless surgeries until in late 97 she went in for a stoma repair and caught a staff infection.. she had 2 months in hospital to get rid of that and then had another surgery on the stoma in Jan 98. The next morning she got up from her bed to be walked around the hospital corridor and collasped and died. She had a pulmonary embolism. She was only 52 year olds. It was such a sad story because she went in for a stoma repair and never made it out.. Sorry just your story brought alot back. I hope you have great success and this will help you deal with your chrones easier.

13 hours ago, macadamia said:

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 29^th, 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.

On 8/24/2018 at 3:47 PM, Lillytan said:

Had my GB on the 6th so 21/2 weeks out and already lost 19lbs. I am a little surprised that my blood sugar numbers have not come down much farther but maybe because I am still healing. I still get a bit nauseous when I drink Water or eat but it is getting a little better. I have found a wonderful Protein Shake that I really like I just wish I could get a flavor other than chocolate lol. Never in my wildest dreams thought I would be sick of chocolate! It is called Orgain Clean Protein and it is Gluten free, 140 calories, 20g Protein 2g fat, 10 carbs, 3 Fiber and 4 sugars. It is also Soy free, non-GMO and Grass fed. You can get a big box of 11 oz. Individuals at costco for like $18. It works ot to admit a $1 a shake if you all are interested. Congratulations to all who have had their surgeries and best of luck to those getting ready. Looking forward to hearing all your experiences.

Sent from my SM-N950U using BariatricPal mobile app

If you look on the costco website they have a variety of the flavors.

https://www.costco.com/Orgain-Organic-Nutritional-Shake-12-count.product.100084577.html

13 minutes ago, Frustr8 said:

My Bariatric Program would say Yes they want all cardiac💓 ones stopped 72 hours ahead.

awesome thanks for the response! 2 weeks to go!

Is anyone taking Lisiniprol for high BP? I am and asked for a recommendation on if i need to stop pre surgery at all.. haven't heard back from the nurse yet.

46 and sleeving on 9/13.. been thinking about it for years and finally taking the leap!