Update after gastrectomy at Cleveland Clinic

  I had the complete gastrectomy with Roux limb reconstruction and J-tube placement on July 6th at Cleveland Clinic with Dr. Kroh.  It was a butt-kicker, but I knew it would be.  The surgery went fine, and I'm sure Dr. Kroh has seen a lot of weird stomachs, but he said mine was very bizarre...spongy and lumpy, kind of like a muscle that has atrophied from lack of use.  I spent 12 days in the hospital.  I needed 2 units of blood after surgery, by blood count had dropped below 8.  I was also experiencing tachycardia (high heart rate), at rest my rate was about 125, and if I got up at all it would jump to the 150's.  I think in the end they chalked it up to surgery stress, loss of blood, and pain.  Pain, that's one I could do without...it's been 3 weeks and I'm still in so much pain.  I also had some atelactesis while in the hospital (collapsing of the alveoli in the lungs due to not being able to take a deep breath).  I have a huge incision from right under the breast line that goes beyond the belly button.  I still have my staples, getting them out on Monday.  I had 2 drains which they removed right before I left the hospital, there was one that was super long because it went all the way around and behind the liver, and I believed it when they took it out, yowsa!! I was on full J-tube feedings when I was in the hospital, but it's better to eat through your mouth than a tube so they sent me home without them to see how I could do on my own.  I haven't done too well, I can only eat or drink so much, it's very tight in there with esophagus straight to small intestine, no real pouch.  I went to my local ER for dehydration on Thursday, got 3 bags of fluid (needed 2 before I could even pee), also had ketones and protein in the urine (a sign that your body is using its own reserves to live).  They only let me go home because they had gotten a hold of a resident at Cleveland clinic that agreed they would talk to Dr. Kroh the next morning and get the home health tube feedings reinstated, unfortunately that never happened.  Dr. Kroh was in surgery all day, I'm still trying to sip what I can and take small bites of pudding/yogurt/anything that will stay down, but I feel like I'm back in the dehydrated gutter I was in on thursday, muscles don't work and twitch, and very little sleep.  I'm trying not to look at now, I am looking to the future and having faith that this will help.  I saw a chef on TV the other day and he had his whole stomach and 95% of esophagus removed due to cancer about 5 years ago and other than being a little thin, he was eating and really doing well.  It gave me hope to see that, a lot really.  It's hard to come across people like us, and that's why I feel like this blog and website are important...I don't want anyone to feel alone, we never are, there's always someone out there that can empathize and you just never know who you may help.  Again, I have to thank all my family and friends who keep pushing me to the next step.  This is a really difficult hurdle for me, and that's why it has been a bit since I updated.  I hope this finds you all feeling better and at least on the right path to wellness.  Hugs, Jules

HUGS.. I was worried I have not see you posted. Glad you are OK>

as for hydration -
I know that it may be drastic - but have you tried pure water high enema t see if you can ge****er through the  colon? 
Google that. 
I use holding enema and cleansing enemas but I also notice that my body will absorb some water what you do that. It will clean your colon, but also the colon is disigned to absorb water. 
I use distilled or purified water. You also can add minerals to the water. (little bit of salt - not much) to try to match the body (1/2 tsp for 1 galon of water)
Just an idea ...

"Enemas have been used for rehydration therapy (proctoclysis) in patients for whom intravenous therapy is not applicable.<sup>[1]"

http://www.jpsmjournal.com/article/S0885-3924(97)00367-9/abs tract</sup>

 Thanks H.B.   It's probably a very sound idea, I'm going to ask my surgeon about it monday when I see him. I'm having a lot of diarrhea and I'm a bit worried it may cause that to continue, not sure, so I'll check it out. Thank you & hugs :)
Jules

When I have diarrhea - I do somethingthe enema - clean - v. light sal****er- to wash the irritatig stuff out and get some water in. 
Not sure if yu get taht - but somethime when i get runs - the stuff is burning irritation inside and even though I may be done - still feel cramping. 
doing fleet enema - with chemical and stuff - or even too much salt will pull water out of your system and makes you even more dehydrated.  So it is a very fine line.
To rehydrate my system and wa**** out (when I get stomach bug) I do pure warm water.  Nothing added.  At the same time I drink salty water (water with minerals added like salt and some mineral mix, or my greens - if I can handle them... ) 

Good luck Jules. 

Hi Jules. Newbie on here, and primarily a lurker, but have read your story recently, and have been checking for your update. I am glad to hear that you are overcoming this hurdle. Please do know that prayers are being offered on your behalf. J.

 Thanks SevenCats! I need all the prayers I can get :)
Jules

 So glad you are marching on! wonderful to hear your great attitude again.
Be well...

 Hi! My name is Danielle and I'm new to this website. Someone told me to go to your blog because I am having some of the same problems you are having. I too had to get a gastrectomy but in my case it was because the stomach pouch that the first surgeon had made for me had collapsed in on itself and was full if scar tissue causing me not to absorb anything. I had been like that for a year slowly starving to death because the surgeon felt that it had to be something else causing my problems. But I wanted to tell you to hang in there. You will be able to start to eat more. Not much more, but more than you are able to handle now. I still struggle with nausea and vomitting and recently I have begun aspirating in my sleep so we are looking for answers on how to stop that. But you need to be careful with what you eat now. Like carbs are a big thing. Since there is no stomach to break them down the correct way they ferment in the intestines which can cause very painful gas pains and painful bowel movements which may explain some of your pain. Also I have chronic pain from all the scar tissue that the j-tube and I also had a g-tube. I take pain medicine everyday because of it. So please be careful and if you have any questions please don't hesitate to contact me or just to talk. I can't believe I found someone else out there like me. I thought I was all alone. Good luck in Cleaveland and I hope you get the answers you are looking for.

I'm sorry for all you all are going through. I've developed food intolerances after the surgery, malnutrition, etc. and its been something else. The nice part was getting dumped out of my surgeon's practice because they've done all they can. You can't go to the other surgeon's practices, so I have no follow up care.

Gotta love it ... I am glad that so many people have good experiences, and I love what's been done and being thinner but this was NOT what I thought it would be like. Luck of the draw.

swim