ALL RIGHT, BE WARNED this will be a very long and detailed post. I’m now 5-weeks out from my first surgery and getting better by the day, very slowly however. I read everything there was on the procedure and thought I knew everything I needed to know, boy was I wrong. I’m going to try and detail every little aspect of the surgery so that others can go in prepared. I found even the painful things were not nearly as troublesome when you knew about them in advance, when things surprised me however I did not deal with them well. I will summarize that while I did experience some complications and set backs, they have not affected the long term integrity or success of the procedure, so for that I’m extremely grateful. As bad as things get in any hospital you only have to go a few doors down to find others that are experiencing much worse!
Prednisone Pre-Surgery & During
Like many posters on this site I was “steroid dependent” even with my Remicade treatments. I would also work in some Imuran during and after flares to get rid of the flare. I was on a steady 20 mg / day dosage since my last bad flare in May and didn’t want to change that and risk another one. However my surgeon wanted me to get to 10 mg if possible before the surgery. I tapered slowly to 15 mg for a few weeks then 10 mg a week before the surgery. He gave me fairly high dosages of IV Hydrocortisone steroids during and immediately after the surgery and tapered them relatively quickly. This might have affected my overly positive attitude immediately following the surgery. I was sent home with a 2-week 5mg / day supply to continue the taper I begun beforehand and have been off completely for about a week, no complications. As many of you know steroids work on UCers by suppressing our immune system, they also impact healing however. My surgeon made an interesting comment regarding this as when I asked about removing the staples he said normally 7-10 days but since I was on steroids he wanted to wait longer (ended up being 14 days) to make sure the incision was properly healed, hmmm! I’m still curious how this might have affected my healing and recovery in other areas???
I was on an 8-week interval of Remicade infusions pre-surgery. My surgeon wanted me at around 6 weeks after my last infusion to perform the surgery, so that the immuno-suppressing impact was minimized and early enough that I wouldn’t be flaring. Made sense to me.
As usual I was prescribed the GoLYTELY bowel prep for the day before. Having done this numerous times before now I wasn’t looking forward to it but I did use a straw to drink the mix each time and believe it or not that seemed to help! I also used the day before to make about a dozen “stool samples” for the hospital staff, see picture! I have to give credit to a good friend of mine who made me one when I was first diagnosed and doing all kinds of tests but I thought it would be a great laugh at the hospital, and was it ever. I had some med students asking if I had any extras so they could have one. It was great giving it to the nurses and doctors and looking at their face in disbelief when I asked them to open it, many actually put on gloves before doing so! I bought most everything at my local Michael’s craft store (containers, glue gun, dowel rods, small razor saw, black construction paper as the containers were clear, and even the wood discs for the tops). I bought small Avery labels at the office supply store and printed them at home to make them look official! It was great fun, minus the fact I was referred to by some as the “stool sample” guy!
Morning of Surgery
I didn’t sleep well the night before as expected, I could have taken a sleeping pill but thought I would stay awake through that and be double miserable. I had requested the first available surgery time so I had to arrive at the hospital at 5:30 a.m. I knew I would be very nervous when I arrived and asked for something to relax me but they assured me it would go by very quickly and with all the other drugs I was getting ready to receive they would rather not. I met about a dozen people, nurses, anesthesiologists, would nurses, etc… I was given my attire, had my IV hooked up, and had my epidural inserted (see below) on pain management. The epidural was not bad but I was at a teaching hospital and I think about 3-4 people had a poke at me inserting the epidural. I wish the most experienced person had done it originally and gotten it over with, it was an dull pain (they give you a local Lidocaine shot first) but very awkward feeling and it took them about 5 minutes to get the placement just right. After all this we learned there was a required doctor / surgeon conference that morning that would delay my surgery by and hour (how they didn’t know this in advance?) but figured that wasn’t too bad. Then we later learned the surgeon had an emergency surgery he had to tend to first. I think I finally went into surgery around 10:30 or 11 a.m. To be honest I don’t remember much of that as I think the anesthesia affects your pre-surgery memory and they gave me a small sedative at some point before hand.
Like any surgery I woke up seemingly “minutes” later in the recovery room. I was somewhat elated, I survived, was told all went well, and it was OVER! I’m sure the pain meds and the large amounts of steroids I was given also helped. I was parched and wanted a drink but all they would give me was a small water soaked sponge to wet my mouth, actually that would be all I would get for about 3-4 days! I was told the surgery lasted around 4:30 hours, and I was in recovery for about 1:30 hours. I was finally wheeled from recovery to my room and greeted my wife and parents, they were shocked how cheery and alert I was.
Pain Management – Epidural vs. Pain Pump
I did not notice that a lot of people mentioned the epidural in their posts and maybe it is less common with the 3-step surgery. I was undecided on whether I would go with the epidural or not as late as the morning of the surgery. I talked to the anesthesiologists and they were no help in deciding. When my surgeon finally appeared I asked him as the tie-breaker, and he was emphatic I should go with the epidural so that’s what we did. Ironically the epidural worked GREAT but the drug they used (Ropivacaine or Naropin) in it dropped my blood pressure to the point the docs worried I might not have sufficient profusion (blood flow) to the surgery site and thus it might compromise my healing. It was removed the day after surgery. After that point I was on the pain pump with Hydromorphone. I think I was allowed to use the button every ten minutes and for the first few days used it quite a lot. I would try to use it proactively as well, if I knew I was going to move around or have to get up. I used the pain pump for the first 5-days, after that I did not use it at all. I was told it did not help the recovery and thus wanted off it as quickly as possible. I did do some IV Tylenol which helped and worked quite well, I can’t remember what days but I think that was around the 4-7 day mark as I was transitioning away from the pain pump.
Post-Surgery Gizmo Inventory:
Nasogastric (NG) tube to pump stomach contents and let bowels rest
Jackson Pratt (JP) Drain – Coming out of the left side of my abdomen, opposite of my stoma
Two IV Lines – In case one failed and so that some drugs did not have to mix. One was put in during surgery.
Drugs / IV Drips:
Ropivacaine (epidural, stopped on day two due to low blood pressure)
Hydromorphone (Dilaudid) Pain Killer on-demand pump
Lovanox Blood Thinner Injections (twice daily – skipped during epidural removal)
Nexium Stomach Acid Prevention (twice daily) – IV then later orally
Hydrocortisone Steriods (250mg tapered down over about a week)
Zofran Anti-Nausea – given twice daily at first then as needed later
Potassium, Phosphorous, Magnesium Supplements (based on blood work) – Potassium burns so it should be mixed well with IV fluids. I even told my nurse this beforehand and it still burned!
Some Daily Highlights / Lowlights from the First Few Days
Day 1 (surgery day): I had heard of some people walking that same day, no luck as I was not allowed to get out of bed till the third day to walk. When you are confined to a bed they put the pressure cuffs on your legs to prevent blood clots. They were hot, sweaty (especially when you’re pumped up with steroids) and uncomfortable. One of the nurses finally recommended I use baby power on my lower legs with these and that helped greatly! She also mentioned you could use long cotton socks. I kept the room at what felt comfortable to me but everyone else was freezing, again possibly due to the steroids. Just about everything is sore and it hurts to move, breathe, heaven forbid you sneeze or cough! Output into ileostomy is light and is a reddish clear liquid. The surgeon used a small bar under the ileostomy to keep it from receding, it was removed around 3-4 days later. Vitals checked every 2 hours. Nothing by mouth, not even liquids, just that damn wet sponge!
Started getting some hiccups, which hurt. Was given x-ray to check placement of NG tube. Hard to sleep with soreness and constant interruptions. Dressing taken off center line incision, cut runs from about 2” above my belly button, curves around it, and then another 8” to just above my pubic bone. About 30 staples in all. It looked good so they left it uncovered to heal.
Cleared to walk and walk I did, about 8-10 times a day. I also chewed a lot of gum as I heard walking and chewing gum help digestive activity, it is hard to chew gum when your mouth is dry however! Moved NG tube 5 cm further down stomach, only got it 3 cm further due to tape residue around nose section. Vitals moved to every 4 hours, less interruptions. Output in ileostomy is starting to turn blackish color, still not much output.
Sponge bath with help of wife, signs of life from between my legs, no nerve damage, yay! Nurses and docs use stethoscope and report that they can start to hear good bowel sounds, although still faint. NG tube removed! Allowed to sip clear liquids in small amounts.
Foley tube removed, have to get up to pee now.
Day 6 and beyond
This is when I started feeling really crappy and I did not take any specific daily notes. My NG tube had been removed but unfortunately my bowels were just not cooperating. In lieu of making plans to go home and start eating again I was getting worse. My energy level was low from no food or drink and from lack of good solid sleep. It was at this point I started developing chronic hiccups and burping. This would last for about 6-8 hours, making it impossible to sleep, and then I would vomit about a liter (everything gets measured by the way, pee, puke, and ileostomy output so docs can keep track of your Is and Os, “ins and outs”) of disgusting black / green stomach bile. It was VERY painful to vomit but I felt incredibly better afterwards till things started backing up again.
My ileostomy output was slowly increasing but no where near where it needed to be. Some bowel sounds were heard so I am assuming the docs stayed the course hoping things would improve very shortly, they did not. A day and a half later with no signs of improvement and late at night after my most recent vomiting episode, I was told I would need a CT scan. Not so bad except that on top of my backed up stomach I would have to drink 800cc (or .8 liters) of contrast on an already upset and full stomach! That was miserable (actually it didn’t taste bad) but I got it down, vomited up most of it, and was wheeled away to radiology for my CT scan at about 1 a.m. At about 3 a.m. I was woken up by the nurse and told I would have to have my NG tube re-inserted, the nurse instructed me she would be doing it and that they do it all the time. Now, having had the NG tube for the first 4-days it was awkward but not painful. On the first attempt the nurse got the tube down about 10-12 inches, hit my gag reflex, I vomited a small amount, and I reached up and grabbed it and pulled it out. She explained that if you get past the hard part it’s much easier once it’s in and it’s over with, so we tried again. This time with another nurse holding one arm and my father (who spent many nights during these not so great days) had the other held down. She got it down but only after I vomited enormously all over myself (remember I’m sitting upright in my hospital bed) being forcibly held down. The tube was in but it just wasn’t right, it hurt and I was having difficulty breathing and talking, totally unlike what it was like earlier. After everyone let go of my arms I waited about 10 seconds to see if things improved, which they didn’t, and I reached up and pulled the tube out again! My only speculation is that with all the vomit coming out of me the tube was diverted into one of my lungs, not a good feeling! The nurse, who was overall awesome by the way, I think was as traumatized as everyone else in the room including me. After much clean-up the on-duty surgeon who ordered the CT scan was paged and called in to insert the tube. The major advantage the docs have is they can order meds, HUGE difference!!! She ordered a shot of the sedative Ativan, wowzer that stuff works well, and covered the tube in jelly lidocaine. It went down with little to no problem, what a difference. Lesson learned, if you ever have to have an NG tube inserted request some meds from the doc! I know there are a lot of people that might read this that have had them done with no meds, for me it was one of the hardest things I had done during my stay. That night went down as the single worst night of my stay. From here we basically started again with letting my bowels rest and for the next 3-4 days I was NPO (nothing orally) while we waited. I have to say I was really miserable during this time period as it was now more than a week and I wasn’t going home anytime soon. It was during these days as well I was sent to get a PICC line inserted so that I could receive TPN (total patient nutrition) via IV line. I guess its common practice for most people who recover in the 5-7 day period to survive and regain their strength by eating, after 7-8 days and not having anything to eat I could tell I was extremely weak and lacked any energy whatsoever. After I got my TPN I felt better physically but as my family describes it I just shut down for about 4 days, I did not talk much, couldn’t read or use the internet, had no interest in watching TV, etc…. I think it was at this point I also was getting sleep deprived. I’m a side and stomach sleeper and thus being forced to sleep only on my back in an uncomfortable hospital bed was tough, not to mention the CONSTANT interruptions from nurses, docs, IV machine, bathroom trips, etc… I would recommend taking one or two of your own pillows from home to help and talk to the nurses about minimizing interruptions.
The next morning I was given the full details on the results of my CT scan. First and foremost I had an ileus in my bowels, basically they were not working. An ileus is often defined as a blockage of the bowels but it’s not really “blocked”, it simply is not working and thus nothing passes, there is not a physical obstruction. I’ve read different statistics but it’s a fairly common complication of this type of surgery, I think I read somewhere that 33% of people get it. I also read that an ileus is more likely in an “open” type surgery. In addition I was told the CT scan identified a blood clot in my portal vein. That really freaked my family and I out, it wasn’t till later when the surgeon came in and explained more that I was somewhat relieved. He said had he not done the CT scan they probably would not have known about it and it most likely would not have caused any problems. In addition if the clot did break loose it would travel to the liver. There it might be absorbed or worst case it could cause some pain and loss of liver function. I was prescribed blood thinners (I was already on Lovanox injections) so I used that to “bridge” to my longer term solution of Coumadin. I will likely take this for the next 3-6 months, actually one question I still need to ask my surgeon is how this will affect my takedown surgery. On the good side I was told my J-pouch looked great!
I’m not sure when exactly but I recall during the second week the most painful thing I was experiencing was the JP drain suture site. Whenever I moved or got up it was a short shooting pain, I was told it was common. There were about 2-3 stitches holding the drain in place, I’m still not sure what the pain was created by though, it’s such a small wound. It was removed on about day 12 and I felt immediately better, especially when moving around. I was told it was a quick and painless process to remove it but to be honest it was VERY painful but for only a very short amount of time, maybe 10 seconds.
On about the 10th or 11th day things had normalized, my bag output had increased and bowel sounds were good so we tried again. The NG tube was removed and we very slowly progressed from clear liquids (2 days), full liquids (1 day), and then finally low-residue solids. My dinner the night before my discharge was grilled chicken, mashed potatoes, and mac and cheese (see picture) – after two weeks of little to nothing it was delicious! I was hoping to be discharged on the 13th day of my stay but my ileostomy output was still very high and watery, but I was handling the solid foods well. My surgeon explained it the next day that had the output not decreased I would have dehydrated so quickly I would have been right back in the hospital. Sure enough my output decreased fairly dramatically that evening / night and on the 14th day of my hospital stay I was finally discharged.
I’ll detail more about more experience once I got home, again the good and the bad, fortunately more good than bad from that point on! I’m now between 5-6 weeks out from initial surgery and I continue to get better. It’s a slow process and it takes a lot of patience. My family, in particular my wife, have been AWEOME, and incredibly supportive. It’s really critical to have a great support team in place and I’m so thankful for mine. I think in retrospect I should not have had such aggressive expectations, this is a very complex surgery and there are many things you can’t control. I’ve scheduled my takedown for January 3rd so I have another 6 weeks till the final step! The end game to this whole process is a functioning j-pouch that allows a normal way of life, it’s a big investment but worth it!
written by Baker