The ileostomy and the Reversal

01/6/12-Almost two months out of my 1st surgery. I haven’t had any posts in a while which is a good thing… I have felt 100% better. With only a couple of complications. I am being checked out on the 16th to see if they can put me back together and takedown the ileostomy. I can’t wait, this bag is terrible. The skin around the stoma is completely raw from getting burned from the output acid; I can’t get a good seal on this thing to save my life. I have done all that the nurses told me to and now the last nurse basically told me tough luck.

My stoma about 6 weeks after surgery, with the wafer and stoma paste showing.

My stoma with the wafer over it after shrinking to about 7/8in.

My raw skin around the stoma from the output.

So the complications I mentioned I had a couple of issues, but there was one that was really terrible. About three weeks after my first surgery I started getting really bad cramping pains, I tried to ride it out but after about 2 hours and with the pain continuing to worsen; my sister had to bring me to the hospital. I could not make it to the hospital I had my surgery at because of the pain so I went to a closer hospital. Once I was in the waiting room, I really started feeling excruciating pain.

The pain was so extreme I was swearing and groaning like crazy.  At this point, they took me straight back where they started giving me IV fluids and painkillers. With no relief from the pain, they took me back for a CAT scan. The doctors told me I had developed an air pocket in my body cavity from a small hole where my jpouch was attached AND that it was infected.

Since the jpouch surgery is fairly complicated the doctors thought it was best if my normal surgeon was the doctor treating me, they wanted to get me down to the hospital I had my surgery. Unfortunately they could not get my vitals stabilized enough to transport me, even by ambulance,  so they decided I would have to spend the night there.

The next morning, I was still in a ton of pain and very frustrated, from what I here. Because of the pain, I don’t remember much from the day I went in to the ER until the day they transported me to the other hospital. I do remember that they would not give me any painkillers because of the possibility of having to go into surgery, even when they gave me that bullshit of rating my pain from 1-10, I told them 11, still no painkillers… About 27 hours after sitting in pain I was finally transported.

So, finally at my surgeon’s hospital I begin to have some relief. Since there wasn’t any bowel activity in the area of the leak (because the intestine was being diverted to the ileostomy) I wasn’t in serious danger of having a big mess in my insides, so they loaded me up on painkillers and antibiotics, until the leaked air was re-absorbed by my body. The surgeon told me the small hole would seal itself over time, the total hospital stay for this event was about 5 days.

Once all that was over and I was feeling better, by the middle of December, things were good. The seal on my stoma was bad and the skin was raw BUT I was drinking and eating ANYTHING I wanted, it felt great! Beer, whiskey, hot wings-you name it, I tried it. Nothing really seemed to make anything better or worse.

My reversal surgery was scheduled for January 19th. A couple days before I had various check-ups.,my doctor wanted to make sure that the pouch was open and without scarring, which there was. He had to “tear” open the jpouch again it was painful and left me bleeding for the rest of the day. The next day I had dye put in my jpouch to make sure I had a good seal and no leaks. I got the all clear and was ready for surgery. The prep for this surgery was 100% easier, I just had to stop eating and drinking a couple days before.


1/19/12: The first incision was at 10:30am and was out by 11:30am, I stayed in recovery until about 4:30pm. When I got to my room, I felt GREAT. NO BAG! I was sitting up, walking, watching TV and checking emails. My incision was about the same size as the hole where my stoma had been and was covered with steri-strips. Then at about 2am I started experiencing a lot of pain that only seemed to get worse. By 8am I was literally screaming in and hunched over in pain, I thought I was going to pass out. My surgeon thought that I had developed a tolerance to the pain meds from my recent hospitalization, so he upped my medicine quite a bit. Still, I continued to be more uncomfortable and nauseous then I was after the first surgery. Also, my bladder was hurting a lot, and it felt difficult to pee with and without the catheter.

My surgery was on a Thursday, Friday I was still too nauseous to eat or drink. Saturday morning I began liquids and progressed to soft foods throughout the weekend. I left the hospital Monday afternoon feeling okay. While I was at the hospital I had some small bowel movements but nothing burning, urgent or substantial.

Monday night I started to feel sick again and I started getting a fever, by Tuesday morning I was vomiting. Tuesday and Wednesday I continued to feel nauseous and sore, it continued to hurt to pee, I continued to vomit and my fever wouldn’t go away. So Wednesday night I was admitted back into the hospital.

After a CT scan, they discovered what I already knew-I had NOT developed a tolerance to the pain meds-I was actually in an ABNORMALLY HIGH AMOUNT OF PAIN! The CT scan showed I had a large pocket of fluid in my abdomen. So, the interventional radiologist inserted a long needle into my stomach to suction out the fluid from the sack.  They couldn’t get all of the fluid out, so they left the drain in with a long bag to allow gravity to collect the drainage. During the procedure I was supposedly mildly sedated but I was wide awake and pretty uncomfortable.

The scar from the reversal on the left and on the right is my leak drain.

The drainage bag for the leak complication after the reversal surgery.

So,  I had to keep the drain for 3 uncomfortable weeks and TODAY 2-15-12 I was able to have the drain taken out. It was a little weird but I’m glad to finally have nothing hanging off my stomach.

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