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
Baker is a 39-year old active professional from Richmond, VA. After being diagnosed 9 years ago, recently his GI Doc stated he was his worst case of “UC”. 2 years and lots of Remicade, Imuran, and Prednisone later it’s J-Pouch time. In his twenties Baker competed in triathlons including numerous Ironman distance events and is now the President of a large multi-state distributor with almost 200 employees. Baker and his incredibly supportive and caring wife just had their first child in June 2012.
I’m feeling honored to be the first one to comment on your story, you are AMAZING, and I wish the very best to you and your family in the coming weeks/months/years, and the speediest of recoveries from this and the next surgery.
Much love from the folks out here in Californ,
Thank you so much for sharing your story. I just want to say that I cried through your very detailed story. My husband was recently dx in June( I believe he has had it for years, but finally got the dx) It has been a very rough ride. He no longer feels up to doing things with the family( do to the many uses of the bathroom) He is always in pain and in flare ups. So lately he has been reading up on the surgery and is leaning towards it. I do believe some of the things he reads or not that informative. Your story is truly amazing in the details that you shared. Thank you so much for your story. I will be sharing with my husband. I pray that it was worth it for you and that you are feeling much better. Thanks again.
Thank you for a honest detailed description of the surgery, I am thinking about getting this done and no matter how much research you do it’s never enough to describe what you may possibly go through.
Good luck on the final step and hope your life becomes much easier with the j-pouch.
Thank you for sharing your story… it is crazy to me the amount of complications that can happen from what you “think” the surgery will be like. My husband had his surgery on 10/12 and was in the hospital for about 14 days as well but had totally different complications. He never had an NG tube but the whole experience left a bad taste in our mouths. He was fine until day 4. He had just started eating solid foods and then he started vomitting, had about a pint of blood fall out of his butt when he stood up and his blood pressure dropped to 74/34. His doctor put him in the ICU and he stayed there for 4 days. He was severely dehydrated and had to have a central line put in his neck to get fluids into him fast enough. They also did a CAT scan and found that he had abscesses in his abdomen and he was going into septic shock. If things hadn’t been dealt with quickly, I could have lost him.
Because of the abcesses, he was in so much pain all the time. He was doing the hydromorphone every 6 minutes and by day 9, he was hallucinating and having “episodes”. They then took him off the morphone cold turkey and he went into withdrawals from it and had another “episode”.
All in all the experience was incredibly traumatic and scary. They actually didn’t want to release him from the hospital but I begged them and so did he. He really needed to go home… for his sanity he needed out of that hospital. The doctor said as you did, that he would probably end up back in the hospital from dehydration in a few days but I’d be dammed if I let that happen. I did everything in my power to make sure he was hydrated, eating and taking his vitals and measuring output… his ostomy bag is still mostly watery but his surgeon said that he had to place his stoma so high up in his tract that it probably would always be mostly watery.
So, when I brought him home he had a JP drain and a simple drain and a PICC line and I had to give him IV antibiotics for like 3 weeks. He also had a series of CAT scans.
Today, he has had the drains removed and his PICC line. The abscesses have appeared to clear up (we pray he doesn’t get anymore). We were hoping his take down would be before the end of the year but his surgeon said we need to wait till next year to be absolutely certain there are no more leaks inside.
He is doing super well though… he can drive, get around by himself… I can finally go back to work and leave him alone. He does get weak if he tries to do too much and I am still fearful of dehydration all the time but he’s off all medication and everything seems to be good now.
After all we went through, I sincerely hope the takedown goes smoothy. :)
But I definately appreciate you posting this here as well… before my husband had the surgery we did lots of research and only found positive things and we knew it would be tough, but we had no idea just how bad it could be. This surgery is not for the feint of heart.
Baker…Awesome! You’re amazing…thanks for the details…your story is another great addition to the tell all/informative surgery route of the likes of Blake, Curtis and others!
After 30+ years I have had the conversation recently with my primary and GI-just again the other day-in the midst of fighting off another flare after being Med free for almost a year and a half…no jpouch surgery up here where I live! and now your story explains a little more why my GI is not so keen…of course he still wants to try ALL possibilities of any meds despite the fact that I’m allergic and intolerant to pretty much all!
Thank you for sharing your journey and we look forward to following you through and hearing your updates and progress.
Continued healing and well wishes,
Thank you so much for this detailed account. I am waiting for my surgery date but it is likely to be in Jan/Feb. My main concerns are the pain after surgery and how long I will have to stay in the hospital. I am in the UK and apparently they try to get you home in four days!! This really concerns me, especially after reading this account. I will be speaking to my surgeon to get clarity on this now! All the best with your continuing recovery and your take down surgery.
Hey Baker, you’re the man! You’re surgery sounded a lot worse than mine. Kind of glad I did it in 3 steps rather than 2 after reading your story. I love how detailed you were and it brought back a lot of memories of being in the hospital that I forget. You’re so right, they don’t let you get any rest in the hospital, even though that’s one of the main things they want you to do. There is always something beeping. I wish you all the best with the rest of your recovery and with the next surgery in January. And if it makes you feel better, I’m feeling great with my J Pouch. I’m really happy with it and hope you will be too. Side note, I got a bidet and that has helped a lot I feel so you may want to look into getting one as a gift to your ass once this is all over with. I love that thing! Best of luck to you!
Blake and Baker,
Loved what you said about noise in the hospital. And then you have a roommate who is a television-watcher. When one roommate fell asleep, I had the nurse turn it off, and he never knew the difference when he woke up!
And I was afraid to go to sleep, for fear I would roll over and pull out the IV, or the NG tube, or the catheter, or ….. so I lay there and stared at the ceiling.
Baker, you’ve been through a lot. I am glad my uc diagnosis/emergency surgery three days later wasn’t as hard medically, although emotionally it was pretty difficult at the time. (I made a Youtube video: rochuc75) My thoughts are with you for an easy January. You seem to be the type of guy who faces a challenge – whether easy or hard – and sees it through. Wishing you all the best.
Thank you so much for posting these details. It helps make it very clear that this surgery, like most surgeries, is very serious. I wish you the best of health and happiness going forward.
This was really hard to read as I think my 31 yr old son is going in the direction of this surgery and he wants its! He doesn’t have a life and wants to get his life back. His Lady of his life is very supportive but we need to think about how much help our son could need. Our family is about 4 hrs from him and so we have some big decisions to make. Thank God for VNA’s etc. and then co-ordinating schedeules to see him through. Thank you for your brutal honesty and reality. It’s very important to get a picture of what could happen and what to expect.
My thoughts and prayers are w/you as yo9u go into your”takedown” in Jan. Prayers from everyone who reads this! GOD IS GOOD, You are a brave, strong person!
Hi Baker! Good to see your in the final stages! I had mine done in 1987- two step procedure. One thing to note after your final surgery- it can be a very emotional experience. I was informed of this beforehand and I definitely experienced it but not sure how common it is. I think what happens is that when you have been suffering from UC your body starts to expect the severe pain when you go to bathroom. After surgery, you go like normal and there is no pain but your body has prepped itself expecting it- perhaps building up some endorphins or whatever. When the pain doesn’t happen, it can be very emotional. Doesn’t last too long, but it’s a trip to go through since you don’t have much control over it. I hope your surgery is a big success!
Thank you for sharing your story, Baker. You have been through it! I’m glad you are getting better and healing well. I’m awaiting the 3rd of a 3-step jpouch surgery, and had a number of complications d/t C Diff. If you start to feel crappy again, make sure they do a cdiff test. That nasty bug seems to be popping up more often these days!
Take care and keep us posted re: your progress!
Saw on another post you just had your takedown, how did it go, how are you now? I’m about 10 days out from mine!
wow.. completely gobsmacked about this D: sorta makes me hope I never need surgery!
noticed something you said about potassium, that it burns!!
I had to take it orally when i was first admitted to hospital, in a cherry flavoured mix, around 20ml of the stuff.. as much as I like cherry flavour, it burned my mouth to pieces!! I had open sores in my mouth from it! eventually I was changed to IV, so it burned less, but it really needs to be diluted well and administered very slowly.
Glad my experience wasn’t nearly that rough since I chose the 3 part surgeries. Was out of the hospital 3 days after my first 2 surgeries and hopefully my last one won’t be so bad. I guess the part where they create the j-pouch is the most rough procedure(I did experience that painful dark green vomiting and was in a lot more pain compared to when they made the ileostomy).
Thank You Baker,I have had my pouch for 6 long years all miserables am in the process of going back to a permanent ileostomy, never should have let my surgeon talk me in to this nightmare.