Hello, I am writing this more as a vent of frustration than anything else. This will be long, so I apologize in advance.
My husband has had UC for 15 years and was considered moderate to severe and was never really able to go into remission. The only thing that ever helped was Steroids and Vicodin. So, after realizing that we couldn't continue just "dealing" with his problem we considered the Jpouch surgery.
Unlike other UC people that I have read about, my hubby is actually overweight. So, when we did the consult with the surgeon he said his only concern was for my husband's weight and he probably would not want to do the surgery laproscopically as it could cause more harm than good. So, knowing all the risks... we decided to go through with it. Also, the surgeon wanted to do it in 2 steps if he could instead of 3. He said if he got in there and didn't think it would be possible we would do the 3 step but if he thought it was ok, he would go ahead and do the pouch at the same time as the colonectomy.
So, my husband's surgery was last Friday. I am writing this message while sitting in a reclining chair next to him in the hospital room. He has been in the hospital going on 11 days now. For what we hoped would have been a smooth experience.
The first few days we were really optimistic. The doctor said the surgery went really well and he was able to do the 2 step. He was in a ton of pain but he had his pain button and a positive attitude. He seemed to be progressing really well and his vitals were good. He started on clear liquids and then on day 2 his ostomy bag farted. They moved him to a soft diet and then on the third day he got moved to solid foods. This is where things got bad.
The food gave him a bit of nausea and they gave him an IV drug for nausea. Well, apparently this drug (and I really can't remember the name) is known to have adverse mental reactions. He fell asleep and then he started hiccuping and it started to sound like he was choking so I tried to wake him up. I was unable to wake him for about 5 minutes but then suddenly his eyes shot open (like bug eyes) and he literally flew out of the bed as if he had no pain or had not had a surgery. Mind you he was hooked up to all kinds of IV's and had a catheter. He started demanding that he leave and that I take him home. He then started pulling out cords and such and trying to get up off the bed. I freaked out and couldn't seem to get a nurse to come help me. I was scared to death. He was talking very strangely and all the time had these huge bug eyes...he was also getting angry and annoyed when I told him he couldn't leave.
Finally, I got a nurse to come help me and we had to detangle all his lines and try to calm him. He let me walk him around the floor ... all the while with these huge creepy eyes. I was crying at this point cause I was totally freaked out. We finally got him back to bed and calmed down but everything changed after that. I tried to go home and get some sleep and when I came back I found out that he had some major vomitting sessions and his BP had gone down. He was also developing a fever. He was also highly dependant on the hydromorphone pain killer, so his breathing and oxygen levels were sort of low.
To make a long story a little shorter, his BP dropped to 74/34 and his heart rate was 150 at that point they finally realized something else was going on and decided to put him in the ICU. They also discovered that he was dangerously dehydrated. This was the 4th day in the hospital. That night, they pumped over 6 liters of fluids into him and he was not improving. I was really afraid he was going to die. Finally, they had to put a central line into his neck to get the medications and fluids into him more efficiently.
It was then that they realized he was in septic shock. Which made things more critical. They started him on heavy antibiotics and sent him off for a CT scan. They found multiple abscesses in his abdomen and figured that some of his stitches on the Jpouch probably came lose and allowed bacteria to leak out into his system. On the morning of the 5th day, his blood pressure finally started to come up and we got his oxygen levels into the 90's.
After the CT scan, they needed to install another drain on the other side of his stomach. Once they did that and he started getting antibiotics, he began to improve and I started to relax a bit. He spent 3 days in the ICU and was moved up to the regular surgical floor yesterday. His BP normalized, his heart rate went down and his fever came down from 101 and has been fluctuating now from 97 to 98.6 or so.
Yesterday, they decided that it was time to get him off the hydromorphone and on to oral pain medication. He was on Hydromorphone for 8 days and allowed to push the button every 6 minutes and get .5 per push up to 10 times an hour. He made sure that he was pushing the button as often as he could. By the 8th day, he was having hallucinations and nightmares. So, we agreed he should move off it. However, they cut him off cold turkey. So, last night I left him to go home and sleep at 1:30. At 3:00, I received a frantic phone call from him that he couldn't breathe and he thought he was going to die and I needed to come get him. So, I rushed back to the hospital and he was quite upset and in a panic. They had apparently forgot to give him his oral pain medication after I left, so he was suffering with absolutely no pain control at all. He was in so much pain he couldn't breathe. So, this triggered the nursing staff to do a "rapid response" as they thought he was having a heart attack. I knew it was because he was having withdrawls from the hydromorphone and that they had not given him any pain medication in hours. The on call doctor also confirmed he had nothing going on in his lungs or with his heart. Again, I had been faced with a super scary moment.
Once his pain medication started kicking in around 4 am this morning, he settled down and was finally able to get about 4 hours sleep. Today, he has been much better and more "himself". He isn't high anymore and the withdrawls seemed to have been fairly quick.
So, after that loooooong story here I sit on day 11 of what we thought would be a 5 day surgery. It has been a long hard road but we are hoping and praying that this has all been worth it. Other than the sepsis, his ostomy bag is working perfectly and he is now eating soft foods again. He still has bacteria in his stomach and still has 2 drains to remove the infection from his belly. He also has wall to wall bruises across his stomach from all the Heprin injections he has been getting to thin his blood.
Today, he is supposed to get a PIC (did I spell that right?) line installed so he can receive antibiotics when he goes home. And we think he may be on them for 2 more weeks. Aside from trying to manage his pain, we are doing well now. He has been up and walking throughout this whole thing except when he was in the ICU. We were starting to regret the surgery but we keep trying to focus on what his life will be able to be when this is all over. He already feels the weight of the UC lifted and hopes the take down won't be as horrendous as this has been (knock on wood).
I'm also hoping that since he got this done in 2 steps instead of 3, that he will have more time to heal and won't have to go through 2 more surgeries.
Did anyone else have a similar near death experience doing this surgery? Most of the stories we researched and read about online were all basically positive. We knew it wouldn't be a walk in the park but I also didn't expect having to think my husband was going to die. I just thank God that the doctors were able to act quickly and treat him properly.
Anyhoo, thanks for reading... I needed to vent a little. This has been the hardest thing I've ever had to go through. I have literally been at his side as much as possible and only leaving to take short naps and feed our cats.
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