Well, like last time I’m well overdue for a post-takedown update.
To start, things are going very well. I tell everybody that asks it’s a week by week or month by month thing, definitely not a day by day recovery (especially the first few weeks). I first have to start by again profusely thanking and recognizing my incredible wife for supporting me and our 9 month old son throughout this entire process, she’s been amazing! It’s really important to have a good support structure in place when you go through this surgery, between my wife and family I’ve been spoiled!
After a very enjoyable holidays with my family and ileostomy bag it was time for my reversal. I was scheduled for January 3rd so I didn’t have much time post-holidays. Unlike earlier GI procedures I didn’t have to do a bowel prep (one of the very few advantages) the day before surgery, it was simply clear liquids only. Like any surgery nothing after midnight including water. My procedure was scheduled for first thing in the morning so I had to be at the hospital at 5:30 a.m. for prep. Like last time I ended up waiting for everyone to show-up and get ready and about 8 a.m. (much better than last time when I got bumped by another case) I was wheeled away into surgery. There was a special forces medic present which was pretty cool (Army Rangers), he was watching a number of surgeries for training purposes. I told him the first one would have been much more exciting!
As usual I woke up what seemed like minutes later in the recovery room. I’ve always been pretty quick at shaking off the effects (I’m sure it’s not as quick as I think) of anesthesia and before I knew it I was being wheeled out of recovery to my room. Like last time I was in very good spirits and pretty chatty. No more ileostomy and a neat little 3” incision where it used to be! My surgeon used stitches not staples and he closed the entire incision (I’ve seen others where they leave the middle open to heal naturally). I did read and the surgeon confirmed that there was a much higher risk of infection due to the fact that there is / was stool passing through the ileostomy site. The surgeon told me to look for signs of infection and that unlike my first incision seromas (fluid pockets) that this incision if it did get infected would be an “abcess”. My entire abdominal area was pretty swollen, something I had not really expected as the reversal surgery seemed like such a simple process, this lasted about 7-10 days, and I’m sure contributed to things not moving through as easily as they do now.
My surgeon had also warned me that the pain of this incision would be worse than the much large mid-line incision from the first surgery. He explained that the mid-line incision, while grizzly looking, is not really cutting through muscle but through the connective tissue that hold the abdominal muscles together. During the reversal or takedown they make a cut right through the abdominal muscle and thus it’s much more sore, especially when you move. He was right about the soreness but overall I was in a much better overall mood after this surgery. Getting rid of the ileostomy bag and knowing I was done with surgeries was great. Not to mention I think I was more prepared for a longer recovery after my first surgery and the 14 day hospital stay. I even tried to sleep on my side, unobstructed by my ex-bag, the first night. Rolling was pretty excruciating but so is not being able to get comfortable in the hospital bed when you are forced to lay on your back.
The other good news after my takedown was that I didn’t have a NG tube or bladder catheter. The only tube I had attached was my IV line. I received saline, an antibiotic, and the occasional pain meds. Like last time I stopped taking the more hardcore pain meds in favor of IV Tylenol on about the second day. For both surgeries the IV Tylenol worked great for me, I looked very forward to the next dose and it was easy transition to oral Tylenol later. Not having an NG tube or catheter certainly allowed me more freedom as well. I was up and walking (and chewing gum) and using the bathroom by myself a few hours after surgery. The first time I used the bathroom I had to pee, and of course they wanted me to use the measuring canister. It was hard to go and when I did it burned and I only produced a little urine. I was somewhat worried but then the nurse told me that’s normal, I was confused but she told me that I actually had a bladder catheter in during surgery and they removed it before I woke up, thus the pain. Sure enough by the third or fourth time I went things were fairly normal.
The afternoon the day after the surgery it was time for my first number two in the bathroom. Like everything else I was asked to measure the output using the toilet “hat”. The first output was a small amount of green bile, but it was reason for much rejoicing, mission accomplished. My plumbing was reconnected and working. From this point through the rest of my stay I would say I went every few hours (or more). The output stayed the same, the volume increased as I drank more liquids. It started turning more brown and thickened just slightly once I started eating food on the 4th or 5th days. It was still fairly liquid even when I was discharged but I was told that too would change and I should start taking Metamucil fiber supplements that would also help. The nurses had warned me that as gas moved through my bowels for the first time in a while it could be very painful. I did not experience much gas during my 5 days in hospital and what little I did was not painful at all.
Sleeping is hard work in the hospital, at least for me. A recent poster had made the comment that the hospital “is a great place to heal, but a bad place to recover” and I couldn’t agree more. With no bag and not many tubes poking me I was able to try and sleep on my side and that allowed better sleep than my first stay but it was still not very good. The last night I actually tried sleeping on a roll-away mattress in my room and did so for a few hours. While it’s important to stay at the hospital and “heal” I think it’s also important to get the heck out of there ASAP so you can get home and “recover”. It’s a very fine line however, don’t push it too fast!
My entire hospital stay I was very fearful about developing another ileus like my first surgery. For this reason I took things really slowly, especially introducing foods. On the third day I was cleared to have clear liquids and I ate a fair amount (popsicles, soup, jello) plus drinking liquids. That night when I laid down I started getting really worried. When I laid down I could feel things in my stomach rise in my stomach to the point I started feeling nauseous. I was afraid I had another ileus and that things were backing up again. I even told the nurse it was “inevitable” that I was going to vomit and carried the bed pan around for a few hours. I requested some Nexium and eventually things settled down and I didn’t vomit. I told the doctor the next morning and he agreed it was likely just reflux. Thank goodness, no NG tube necessary and still moving forward to discharge.
After a couple days on clear liquids on my fourth day I progressed to soft foods. I handled everything well but continued to proceed cautiously. Things were getting through but it wasn’t a easy trip. There was lots of rumbling and many trips to the bathroom. As I mentioned things had started to turn brown but remained mainly liquid still. I kept on my rigorous walking schedule and wore out the hospital hallway. On the 5th day I was discharged and told to proceed cautiously. It’s always a joyous day and at least with my surgeries I was more than ready to “escape”. By this point the pain of the incision was getting much better but it was definitely still very sore, it’s amazing but you use your stomach muscles for just about everything! Sneezing was always scary, even 5-10 days after the surgery, the nurses recommended and it helped to hug a pillow to your abdomen when and if you need to sneeze.
After getting home I was very excited about finally getting some much needed sleep. This was tough as the “rumbling” in my stomach was pretty violent. I think it was a combination of gas, food, healing, etc… But the noise and sensation was unmistakable, I told my wife it was a “thunderstorm”. It was if things didn’t flow smoothly through my new plumbing but instead were stopped up would collect and then violently explode through. Good news was things were passing. The pain was minor, kind of felt like a mild cramp, with the occasional sharp more painful cramp. It was enough though to wake me up at night and / or keep me from sleeping, even with sleep aids like Ambien.
After discharge I was fairly careful with my diet, you never want to go back to the hospital but like my last surgery it progressed fairly quickly. I find now that I eat smaller meals and snacks, more often, and I have to be careful to not skip or postpone meals as I then tend to overeat and eat too quickly. I’m also eating bigger breakfasts and smaller dinners, something I probably should have done all along. For the first 2 weeks about every two to three days I would get a “food bolus” or blockage. Fortunately they would typically pass after 4-6 hours and drinking lots of water. I found eating bread was a common culprit. I also started experimenting with Metamucil but I was hesitant due to the frequent temporary blockages to slow things down further. I remember going to my 2-week follow-up pretty disappointed with the progress and the surgeon told me to be patient and things would settle down and start flowing more smoothly, he guessed no more than 2 more weeks. He was right and fortunately for me it was practically the day after my appointment right after the 2 week mark I noticed a fairly dramatic improvement and the calming of my abdominal “thunderstorms”.
Regarding bathroom usage: As I mentioned earlier I was probably using the bathroom 15-20 times a day the first week or so. This started to get better as solid foods were introduced but for the first few weeks was still 10+ per day including 2-3 times at night. I must say going at night definitely affects your sleep as I would typically be in the bathroom for at least 5-10 minutes, by that point your body has woken up and it’s hard to get back to sleep, as opposed to stumbling in there to pee and jumping right back in bed! I was at the 8-10 times a day for probably 2-6 weeks out, at least once at night and thought that might be where I ended up. After things started moving better I started experimenting with Metamucil and now take it twice a day, in the morning and at night before bed, about 1-2 tablespoons. I have not had to take and haven’t experimented much with Imodium. I’ve noticed sometimes it feels as if I can’t empty the entire pouch like I would like to, I would go but then feel shortly thereafter that I would have to go again, sometimes sitting on the toilet longer would help and I would pass more. I also noticed blood occasionally, not in the stool but when wiping or right at the end of my movement. I’ve read from others and was told by my doctor this is common. At about 6-1/2 to 7 weeks I noticed a really positive change with my bowel movements. I went from 8-10 a day to 4-5. That includes not getting up in the middle of the night which is helping my sleep incredibly. I’m definitely more confident I can hold it and won’t have to run to the bathroom. I find myself thinking sometimes I could use the bathroom but then I get side-tracked and I realize hours later I haven’t gone or felt the need to. I also appreciate being able to proactively empty, if I’m going out I can typically use the bathroom so that I know I will not have to use it in the next few hours (some of my friends with colons even appreciate that ability)! I now can typically empty my pouch entirely much more quickly, especially if I haven’t gone in 4-6 hours. The gold standard for me is going to the bathroom and emptying till I pass gas, that tells me the pouch is empty. There are days where I can’t do that and I do feel just slightly bloated and end up using the bathroom more often, lying down after not passing gas sometimes helps. I notice at night once I’m horizontal I can safely pass gas as it moves through my pouch, simple physics I guess, I don’t dare try while standing or sitting.
Butt “burn”: Almost everyone that has commented on j-pouch surgery on this site and others has talked about very painful butt burn. I think I’m a combination of lucky and somewhat well prepared in that I had some minor issues but nothing like others have talked about. I took my own high-quality and very soft toilet paper and baby wipes to the hospital in addition to some of the ointment which I ended up only using once. I also took Blake’s advice and ordered a bidet for home. I bought a retro-fit seat model from Coco model from Bio Life Technologies. I can’t tell you how super impressed and happy I am with its purchase. It was around $300-400 bucks and installs on top of your standard toilet. It took about 15-20 minutes to install, nothing too complicated. It requires power, we had to run an extension cord to the nearest GFCI outlet as outlets typically aren’t located near the toilet. It has 4 or 5 different functions, I use the “wash” function after using the bathroom and it’s amazing and leaves you as clean as if you’ve just got out of the shower. Between the bidet seat and plenty of baby wipes I’ve for the most part avoided the dreaded burn.
At about 6 weeks I started exercising again. I’ve run about half a dozen times and I’m already back up to 30 minutes. I also hit the exercise bike and do some yoga about twice a week. I’m going to try to keep off the weight I lost during my surgeries and get ready for a very active Spring / Summer season.
All in all I’m feeling pretty damn good considering all that has happened. It’s a very tough process but to be honest if it stayed like this I would be very pleased, but I’m hoping it gets even better as my body continues to adjust. I’m a Chipotle restaurant addict (while the food is spicy it’s all organic) and I’ve cut out the burrito in favor of chicken soft tacos, that typifies all the other small changes after a surgery like this, it’s different but not much. Honestly, had I known some of the difficulties I would have had with my first surgery I probably could not have forced myself to do this. However as it’s in the past, we humans have an amazing ability to shove bad memories way back in our brains so that we tend to forget. I no longer have UC, I’m off all the meds, I’m exercising, and have an above normal quality of life! I know there are risks to this surgery and there are people out there that have had complications (all be it rare) but it’s a long messy surgery and recovery but in my case it’s worth it!
As a final thought, I am also getting very actively involved in my local Crohn’s & Colitis Foundation of America (CCFA) chapter. My company sponsored their “Super Bowel 5K” (held Super Bowl Sunday), I’ve signed up and am putting a team together for the “Take Steps” fundraiser, and should my progress continue I’m going to run one of the CCFA Team Challenge half-marathons. Too many people affected by UC (and Crohns) are afraid to talk about it but it’s amazing how many people have it or are close to someone who does. And like many other avid supporters of CCFA I do believe there is a cure out there, we just have to find it!
Good luck to all the others out there suffering from colitis, we all have a different path. If surgery becomes part of your solution please don’t hesitate to contact me if you have any questions or concerns you would like to discuss!
written by Baker
read all of Baker’s stories here: https://www.ihaveuc.com/author/baker/