5 days out of surgery and struggling....

Hey there all,

Quick update post surgery:

Doc is pretty confident he found the cause of my pain/vomiting: adhesions upper left, and structure/adhesions lower right. It’s been 10 years since my last open surgery, and I am struggling.

Beyond the obvious issues, all of the meds I was on caused terrible side effects. I had low blood sugar and almost passed out, low potassium, and now have the most lovely “urgency” shall we say that hits me even while sleeping.

Just left the hospital and they swear it’s just due to the medications designed to speed things through. Now, I am stuck with the most awful D and am weak beyond belief with no interest in eating at all. I’m trying to keep up my blood sugar and my strength but I am struggling. Man, this was much easier when I was younger. Sorry to vent. I know it will pass, but I am just weepy tonight. Thanks for listening friends.

Unfortunately, I too have no helpful advice to get you improving. Just offering you support and strength. Hopefully you'll see improvements each day and you'll renew your fortitude. As tough as it might be, you probably really need keep your calories up. At least stay hydrated, and try to get some boost or ensure down. Keep us posted.

So sorry to hear your struggling, Juliet! I know the last surgery I had it was certainly a struggle for me, compared to my previous ones. They had me on TPN for a month following, so I could get my nutrients through that and wouldn't have to rely on the food intake... which was a huge help. After TPN, then it was 3x weekly potassium chloride infusions at the hospital, for 6 months.

I do believe you are dealing with dehydration too... see if they can get you some regular fluids right now while your body is healing. Intake of fluids didn't work for me, as my absorption through my intestinal tract was hindered. IV fluids may be of help, IMO.

Otherwise, will be sending prayers your way that things get better... day by day... unfortunately it could be a bit of time...

Thanks everyone. Now, I have the D, and just started bloating. I look like a Macy’s day parade float. No vomiting or pain just discomfort. Praying it doesn’t escalate so I have to go back to the hospital. 🙄 I cannot fathom an NG tube.

I am happy you had your surgery but sorry you are still struggling! I had the same experience after resection #3 last August. My doctors just kept telling me it was normal post op pain and inflammation. I tried to believe them but finally, 7 months and 6 CT scans later, we found a leak and abscess at the new anastomoses. So listen to your body! I wish I had been more insistent instead of suffering these past months. Most days I could barely get out of bed. I knew something was wrong. I am headed back to surgery the end of this month after finishing 3 weeks of antibiotics. I too thought I was just slow to recover because I was older this time (I’m 47). You are only a few days out from surgery, so too early to panic, but just be persistent. You deserve to have a good outcome! This is such a frustrating disease and even the doctors don’t always have answers. I’m terrified of my future with all the radiation I have been through and drugs put into my body. Not to mention losing more bowel with each surgery. But what choice do we have other than to keep plugging along? : )

Hi again! After that awful weekend home right after the surgery, I am feeling much better. Still have the same pattern, however, each day: eat breakfast, D for about two hours, then quiet until the next day. What’s gone is the excruciating pain when I eat which is an absolute miracle. Y’all, I ate and eggs the other day and cried. It was one of the most delicious things I’ve ever tasted. I do believe I had lots of issues digesting even small portions of soft foods because it had been so many months of not eating. I’m sure my body was a bit confused about what it was supposed to do.

Meanwhile, my dear 76 yo Mom is staying with me, cooking meals, and doing my laundry. We are having a great time visiting together, and I am getting a tiny bit better each day. I go for my 3 week check up next week. I am still sore and achy in weird places, and it looks like a bikini is out of the question this summer (ok, so that hasn’t been a thing for about 30 years!), but I can eat!

Honestly, I am so grateful for this forum. I don’t know how I could have survived the past year without folks that understand and without your advice. I was in a very dark place many times, and this was a blessing. Thanks to everyone that responded, and even those that just read my updates and sent positive thoughts and prayers my way. I appreciated it all.

I am aware that even though I’ve gotten through this rough time, there will be more at some point, but for now, I am trying to appreciate the good while it lasts. I’m a few years away from retirement, my son graduates from college in a few months, and summer is coming!

Love y’all so much, and wishing you all the best health ever. I’m here if anyone needs to chat. ❤️

-Juliet

That is such great news! You so deserve a run of good health. Hoping it continues for a very long time. My “redo” surgery is Monday. Hearing your story makes me cautiously optimistic for a good outcome finally! I have a great surgeon.