Baker with his family
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/
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.
Baker, thanks so much for your update. I’m about 3 weeks post takedown surgery, and I’m still having a hard time. Your update gave me hope that there’s still more time and healing to be done. Like u, I was in the hospital for 14 days for my first surgery. Unfortunately, unlike you, I was there for 11 days after this one. I needed the ng tube, which I somehow avoided the first time, and the catheter for days. It was awful. I’m so glad you’re feeling well and that you can see how far you’ve progressed. I’m hoping the same for me. Best of luck as you continue to heal!
Christine, good luck, I was still very worried and skeptical at 3 weeks post takedown. You’ll have your milestones and things will get much better, the 6 week mark has been magic for me both surgeries. And like I tell everyone its week by week or even month to month, definitely don’t worry day to day, keep focused on the big picture!
Thanks Baker for your detailed story. I love the details and it helps me to have hope for the future and not be so caught up in the difficulty of the process. Knowing it gets better helps so much. I am waiting to have my 3rd surgery…I had the 3 step surgery approach and my j-pouch is in the process of healing and my body too. I have a doctor’s appt in about a week to see if everything is healing properly and if so, then I will schedule my 3rd surgery. Wondering how you did in the hospital after your last surgery? Did your bowels have to wake up? Did you have any vomitting or nausea? Those are my greatest fears b/c I had this with the first two surgeries, but they were also much more difficult surgeries. Thanks again for your story. When I have the energy, I would like to write out mine too. I would like to do it when I can end on a more positive note!
Susan,
To answer your main question, no I didn’t have nausea and vomiting after the second surgery, it was much better recovery, but I was also very cautious due to my fist surgery experience. I know there is still a risk of complications but much less than the first major surgery. I’m now about 8 months post-takedown and things are great, I’m flying again with no anxiety and enjoying summer to the fullest including exercising, BBQs, beers and cocktails, etc…. It’s amazing how the human brain works and I’ve already put lots of the traumatic experiences of the surgery deep away, you will too once you are finished and start your recovery.
Good luck & good healing!
How is your post procedure going now I’m only 8 days post op I need a success story or advice from ppl who have had my kinda problems
Baker,
Once again, you are amazing, and I’m sure you are going to continue to improve moving forward. Keep up the positive spirits, and best of luck to you and you family in the weeks and months to come!
(And good luck with all your work with CCFA!!! Maybe you’ll get in on the Vegas Half Marathon someday???:)))
-Adam
Baker it is so great to hear that you are doing so well and i hope it continues to get even better :) also thanks for sharing your story and tips for j-pouch. I am looking at having my colon removed this summer and get a j-pouch and I am scared to death but I guess living with this disease and meds is scary too! I appreciate all the detail you provided because it helps me get a better idea of what it might be like once my j-pouch gets hooked up.
I also hope to start getting involved and meet/help others with this crummy disease :)
Sucks to have to have the surgery but I read your post and definitely sounds like your best option at this point! I too scheduled the surgery months out, the waiting and pondering was difficult, I often wished I had just gone ahead and done it. However it’s always nice to know what’s going to happen so you (and your family) will be fully prepared!
Baker…Congrats and continued progress. Great detailed update to your other posts. Healthy thoughts! Shelly. :-)
Baker, thanks so much for your update. I was wondering how well you did, and by reading others experience with J-pouch, I know a little more of what to expect.
I have consulted my surgeon, and he has mentioned to me that there are two ways they can do this. One way is to leave a little bit of anal canel (about 1.5 cm), which reduces the rate of leakages, but I have to get the area checked out for cancer every year. Advantage of this method would be reduced rate of leakages. Another is to remove complete rectum including anal canel but only leave the sphincer muscle. The advantage is no risk of developing cancer but increased rate of leakage. Which one did you opt for?
Do you know the rate of pochitis? There are some people out there who get chronic pouchitis, ending up getting the J-pouch removed opting for permanent illiosotmy.
I am scared of two issues post-op: ending up to have Chrones, and chronic pouchitis which would require strong medications just like UC days, and needing to get the permanent illiostomy.
Were you scared of these risks I just mentioned before deciding on whether or not to get the surgery? Also after the surgery, how long did it take for you to be able to go for grocery shopping or doing the house chores post-surgery?
I am very glad that surgeries worked out well for you! (I dont think I can bring myself to go for the surgery…what made you decided the surgery was for you, knowing those risks?)
Thank you for sharing your personal experience with the rest of the people here.
I think there are a number of tests available to test for Crohns, I had one done at Mayo but I can’t remember the specifics, some sort of special “panel”. I don’t think they are entirely accurate, I was slightly more at risk of developing Crohns like symptoms based on one test but it was a 5-10% likelihood. My surgeon dismissed the tests, I’m not sure if he did because they’re inaccurate or he was just trying to get me to not worry.
I did talk to my surgeon about the “cuff” length as I had some bleeding post-op and thought it might be cuffitis. He said with the new surgical staples and procedures the cuff length left is very small. I haven’t heard about leaving a longer amount for better control or to reduce leakage. I haven’t had any real issues with leakage thank goodness, except for once right after surgery. I can imagine its not pleasant but don’t know if I would make a decision on the surgical process to reduce leakage, I just don’t think you have to. Have you consulted with another surgeon?
Finally, regarding pouchitis, I don’t think there is anything you can do to tell if you are likely to experience this or not. You’re right some people, although very rare, get chronic pouchitis, I think many more never get pouchitis at all. And I don’t think cuff length has anything t do with it.
Good luck, hope this helps, let me know if you have any other questions.
-Chris
I saw a forum dedicated for ostomate…there are a few people choosing ostomies instead of J-pouch reason being that only sure way to get rid of UC, ostomy is the answer for them. If I go throgh the surgeries (especially 2 surgeries that quite a lot…), I want to make sure no UC would return…
I am currently on Prograph (which is better version of Imuran), but its pretty strong and I would not want to risk developing lymphoma. Did you take Imuran for sometime, how long were you on it? I am afraid I am weak to infections by being on immunosuppressant for a long time. I live in a big city where I have to take trains to commute and I am wearing masks so I wont get bugs. How was it for you when you took immunosuppressant?
Would you go back to an ostomy if you have to? I am also thinking ostomy is better than J-pouch, I wont know what to explain to my employer regarding two surgeries to my employer.
Just to keep my options open, I am going to see another surgeon. I can go and get the best surgery from other doctors but its another state. I wouldnt know what I would do if I get post op. isses if I have to travel by plane once I am home. Just curious after colorectomy how long did you take to be able to do things on your own, like landry and yard work for example? I wonder how long I would have to take some time off to recover post surgery.
8 weeks post-op, can you eat what you want? Can you eat greasy food once in a while?
I was on Remicade, Predisone, and during and after flares Imuran. And while I know those were all immuno suppressors I never found I was more prone to getting sick, thank goodness. I did exercise and eat well so I’m sure that helped. In talking to a few of my doctors they said I should be more concerned with long term Prednisone use than worry about the others.
I think all J-pouchers know they might have to go back to a pouch but I certainly wouldn’t choose to do so. I think the technology and experience with the entire j-pouch procedure is very good these days and while it’s not an easy surgery the vast majority of patients are very happy with the results.
I chose not to travel to have my surgery completed, like you said, a lot of follow-ups, and for me it would have been hard on my family. I would safely say 4-6 weeks off work after your first surgery, and 2 after the take-down. I was fairly self-sufficient after a week or two but they don’t want you lifting more than 10 pounds for at least 6 weeks with the abdominal incisions.
8 weeks post-op I am basically eating what I want, although I have to be careful and use some common sense. Greasy food, spicy food, no problem every once in a while.
“I think all J-pouchers know they might have to go back to a pouch but I certainly wouldn’t choose to do so”
If you dont mind me asking, why do you all know that you have to go back to the pouch?? Are you refering to the case of developing chrnoic pochitis or failure of J-pouch?
Was it very hard to live with an ostomy??
I understand you have to empty middle of the night?
Its the risk I am really afraid of. What if complications occur even after 2 surgeries, tone of pain and time off from work, I end up having chronic pouchitis or narrowing of the area sawn up, only to end up with a permanent illiostomy.
I am just trying to understand the pros and cons. Was ostomy so difficult to live?
I dont quite understand why people choose J-pouch almost as a default option. My GI said even if I have sugery I am at risk of getting pouchitis and some suffer from chronic one, where they have to use UC medication again. Apologies for many questioions.
Once I have surgeries it would really be disappointing to end up with UC like symptom again (bleeding, urgencies…etc), if that happens for me it would be a hell I think.
My point was if they do develop chronic pouchitis or other complications you might end up with a permanent ostomy bag, it’s a very small risk but one that exists. Once you’ve lived with the bag I don’t think it’s as bad as most people expect, but it was definitely something I was very looking forward to getting removed. Again, I think chronic pouchitis and pouch failures are very uncommon.
Sleep wasn’t say but now after about 6 weeks pot asked own I’m easily sleeping all night long. I occassionally get up to go but no more than before my surgery.
It’s a big decision, keep investigating and researching, and make the right decision for you!
Hi Ellen,
I had a blood test called the promitheous. It is a good test that will point to Crohns or UC. I had my colon removed at the Cleveland Clinic in January and they were able to determine by examining it right away that I had UC and not Crohns. If it is UC then you should be cured but if it is Crohns it will attack the J Pouch. I chose the 3 stage surgery because they only make a 4 inch incision across your abdomen for each surgery of the long horizontal cut. Either way I think both ways work well but there is a longer time till take down with the 3 stage. I agree with Baker that after you adjust to having “the bag” life really is not that bad but it is something that I do not want to keep. A big key to your success is to make sure you choose a surgeon and a hospital that do these surgeries on a daily basis rather than on occasion.
Mike, thanks so much for letting me know about the test “promitheous”, I am going to ask my doctor. I appreciate other surgical advice too. Most of the surgery consult I visited is 2 steps, unless I am very ill. Its still a very scary thing and a big decision but you are right, getting the procedures done from hospital who does it all the time increase the success factor. Very informational, thank you!
Hi Baker,
I am 10 days post takedown and it has been miserable so far. I’m experiencing horrendous spams all the time and continually have the urge to go to the washroom. I’m wondering if you experienced anything like this and if the pouch will ever start to adjust?
Thanks,
Chris
Chris, I sure did! Right up to two weeks, I can’t say when I felt them I had to use the bathroom but it was bad enough I couldn’t sleep and you could her them across the room. I had a follow-up with my surgeon at 2 weeks out and that was my biggest issue, he said it might be up to a few more weeks until it went away, however fortunately for me they got much better the very next day. My next breakthrough was around 6-7 weeks where I went from going 8-12 times a day to more like 4-6. I think it’s all part of the healing process and then time as the pouch expands and your body adjusts. Hang in there, I expect you’ll see dramatic improvement shortly like I did!
Chris, just wanted to follow-up and see how things were going now that’s it been another week, any improvement?
Hey Baker, good to hear about your success! I had my takedown a week ago and have been having trouble with things passing through. It’s almost like I’m a bit constipated. Did you experience some trouble emptying at first? I’ve been reading about strictures, but I hope it’s just inflammation from having the surgery so recently. That and the butt burn, those are my only concerns. Thanks!
Anthony, yes things did not flow easily at first. I would have very frequent movements with little to no progress, the less you pass the more often you end up going to the bathroom to try. It does get much better and I think as your doctor told you try to hold it. I had better luck (can’t remember when) holding it and then passing larger movements than I did with multiple smaller movements. I think something about the pouch construction and just being so new makes it hard to empty when there is just a small amount in there. My first big improvement was at about 2 weeks when a lot of the gurgling and spasms stopped and things definitely started moving more smoothly and consistently.
I’ve fought the butt burn with the Coco bidet toilet seat, an awesome invention, and plenty of sensitive wet wipes!
Good luck!
Hey Baker it’s Jackie again! I just wanted to check in and see how you are doing. I was reading all of your stories again because you are one of my heroes! I am like you and feeling good almost no symptoms going into surgery! I am 2 weeks out (June 10th) and if I could do it today I would. I agree that scheduling the surgery far out is kind of stressful….too much time to ponder. I have finally gone through all the emotions and am excited to do this and get it over with and move on toward the healthy, happy, new me! Again just wanted to thank you for your stories because I can relate and they help me understand what is in front of me and that I too will come out on the other side a survivor of this disease :) Take care!
Jackie,
Sorry for the delayed reply, busy weekend and busy week! I haven’t been checking the site as often as I used to but I need to post another update. Things are very good, I’m adjusting to the new normal, starting to exercise again, learning what I can and can not eat, and getting rid of my prednisone face. It’s not an easy path by any means but I keep reaching and passing milestone after milestone which makes things even better. For example I flew on an commerical airplane for the first time since before my surgery, I actually cancelled a few trips last summer due to my incredibly high anxiety about having an accident, which just makes things worse! I love to travel so thinking about not flying was troubling. In addition I got stuck in a severe traffic jam on a busy interstate during the pouring rain with a business associate for almost 2 hours. That situation alone would have made me so anxious I don’t know what I would have done pre-surgery. While I was a little nervous during both events now that I’ve been through them I’m so relieved and my confidence is 10 times better if and when the next time occurs! I’m using the bathroom 4-6 times a day, my follow-ups with my surgeon have been great and they’re very impressed, not to mention they say I look totally different and better. I still have a little bit of occassional light bleeding but my surgeon has said that is nothing to worry about and we’ll investigate further at my first scope in a few months, he said it might be mild hemmorhoid inflammation. The Coco toilet seat has probably been one of the best purchases I’ve made, definitely consider investing in one!
Good luck and here’s to a complication free surgery and quick recovery!
Jackie,
Just checking in, how are things going? You’re probably still in the hospital unless you’ve totally rocked the recovery, if so great for you! Remember it will be at least 6 weeks until you feel normal and have any energy so keep in good spirits and give us an update when you get a chance!
Thanks,
Baker
Hi Baker. Great to hear of your success. I am scheduled for takedown on June 27th.
i have two questions. First, you mention a more painful incision. I was unaware that they would be making more incisions during the takedown. I thought they just sewed up the ileostomy site and everything else was done laproscopically. I seem to be missing a step in there.
Second, do you know the model of your bidet? There seems to be tons out there at a wide range of prices.
Any insight would be appreciated.
Thanks
Kevin
Kevin,
Good luck, sorry for the late reply. I’ve been living a great but busy life lately and haven’t been checking the site. The more painful incision was at the takedown surgery incision since it’s through abdominal muscle, the mid-line is large and scary looking but really doesn’t go through too much muscle, just connective tissue.
The bidet I purchased was the Coco bidet, I can’t remember the model but they’re all pretty nice. I’ve had it now for almost 6 months and still love it! Plus I think most everyone in Japan uses something similar, can that many Japanese people be wrong??
Life is great and I’m full of energy, maybe too much as I think I have an incisional hernia. Doesn’t hurt but I was thorougly warned about them and I’ve been lifting too much heavy stuff as my family and I move homes. My family is all giving me the “I told you so’s”, but in my defense I felt so good I thought I was in the clear!
Best of luck to you, it’s going to be rough, but it’s much better on the other side! Speedy recovery and stay strong!
-Baker
Hi Baker,thank you for your detail story.ihv colitis since 13 daignose by 16.initialy it was mild and i can control but 2005 after i cm bk from cruiseline job things get out of control iwas given remicade,pred…..To mk it short well igt bad relapse evry three years like running 30 times to the bathroom.Now ihv m relapse since april 2013 now my bowel movment is upto 12 times my doctor doesnot want to give me remicade anymore he suggested me surgery and refer me to a surgeon who have done lots of liproscopy,so my surgery is schedule for 7th aug if not 14th aug.i hope it vl go well n pray that i adjust better with the colon free life.I continue messalimine,azathioprine etc all this steriod medicine have given me lots ihv jointpain,im now 34 yr old lady:-)n my teeth decay though i brush twice with the best paste as usual:-)so im looking forward too n m prepared and thanks for your information.hv a fabulous life and il msg you if i hv queres.thanks again
Hey Baker… five weeks out from my takedown after 15 months with the bag. Still experiencing very sharp stabbing pains that are pretty crippling, not buttburn but above that. Were you in pain this far out from takedown?
Hi Baker. I am a 20 year jpoucher who is preparing for my first ironman. I came across your story and was curious on how you are doing? Do you still train for triathlon? I would love to hear some feedback as how your feeling and if you plan on doing any events like half/full marathon or triathlon? Hope your adjusting well to your jpouch! Sincerely Tom
Tom, good for you and good luck! I haven’t been racing since long before and since I’ve had my surgery. I like you competed in my early and late twenties, the best time to do it if you ask me, especially with the time required. Once you have a family and a career it’s hard to balance.
I would like to someday do another one, with my kids present, however at this point I my j-pouch is a lesser worry vs. knees, bum shoulder, aching back, etc…
I do still swim, bike, and run just typically not in a competitive environment and not back to back. I talked to the Docs about endurance sports and they cautioned just to be careful about hydration since your colon is responsible for absorbing a lot of water, can’t say I’ve had any problems though.
What race are you planning on doing?
A good friend of mine who is still very involved in the tri community told me the owner (or one of the principals) of Active.com had a similar surgery and is still competing, I can’t verify that however.
hi baker i have just came across your site im 17 years old had my j pouch surgery on the 20th march 2014, due to complications i was an inpatient in hospital for 3 weeks , i had my original first operation when i was 15 , i had to have my large colon removed because of toxic mega colon from my ulcerative colitis,i have read on most peoples experiences that there procedure for there operations was a 3 step process , mine was only two the removal of my colon then the reversal 2 years later, i have felt awful since leaving hospital constantly being sick [ though this does pass sometimes when i belch etc.] i also cannot eat a thing either since leaving hospital i just feel so ill, could i be experiencing what the second operation side effects should have been if i had a 3 step reversal , also could you please advise me how you introduced food again, and what you could safety drink without it upsetting your stomach i don’t no if what im experiencing is normal or not and i really do not want to go back to hospital please could you help me thank you
Jordan,
I’m no doctor but they should not have discharged you if you are unable to hold down food. When did they create the j-pouch, during your first or second surgery? I was thinking it was not a 2 vs. 3 step issue but if indeed they just created your pouch and removed your ileostomy at the same time it certainly could be very challenging for your body to adapt and heal.
You probably read but I had a ileus and it really backed me up, lots of vomiting, no output into my ileostomy, etc… Sounds mildly like your symptoms. They diagnosed it with a CT scan and then I was taken off all foods and fluids for 3-5 days while it healed and then they slowly starting reintroducing again, first small volume of fluids, then soft foods, then regular foods, always watching for good movement and no blockages.
You may also have a pesky bolus of some sort, I had a number of them after both my surgeries. My advice there, don’t overdo it, chew food thoroughly, in most cases they occurred because I scarfed down foods I shouldn’t have been eating in the first place and didn’t chew enough. If this happens drink lots of water, get horizontal, and it should pass.
Also, after my second (reversal) surgery I swore the pouch was not working. I did suffer a lot of pain . It kept me from eating normal meals but I was still eating and drinking. I recall telling my doctor at 2-3 weeks, he said just wait and give it time, then again at 5 weeks I was sure something was wrong, he again said just wait, that 6 weeks was the magic number. Sure enough at just before 6 weeks post 2-nd op things got much better.
Hope this helps, if truly you are not eating or drinking, and often vomitting I do think at the very least you need to see your doctor again quickly. As I mentioned they wouldn’t even let me leave the hospital till I could comfortably hold down food. If you can’t your body won’t be able to heal and get better. Get some professional advice (or even a second opinion if necessary), your young so you’re very fortunate to have that working for you. This too will pass!
Your story has really perked me up. I am day 5 after reversal and bathroom trips are as expected v frequent! I coped really well with a stoma and can’t help keep thinking “have I made the right decision to have the reversal and will my quality of life be worse” it’s v early days for me but it gives me great hope when I hear success stories. Thank you for sharing.
i am going in for my takedown this week
i was suppose to have it done a week ago but when the dr went in i had a cyst and a hole in my pouch of which he fixed. Now for the 2 time he wants me to go in the hospital where they put contrast into the pouch to see if theres any holes
has anyone had this done??
also since my 2 surgery i was going to see the dr every 2weeks where he would go up my rectum to check the pouch and put a balloon in the pouch i guess to stretch it?? has anyone had this done
nobody told me i was going to have to go thru all this after my second surgery ugh
im wondering is this normal or just my dr’s protocol
PLEASE HELP
thanks
Hi Beth …. My name is Sonny I just read your comment and I see your takedown was in 2014 and my was just a week ago and I was wondering how are you doing? And what was your road to recovery was like I’m glad to read that you was on great spirit because I know I’m great spirit as well but scared at the same time I hope all is great with you …
Hi Baker my name is Sonny I’m 41 I’ve read your story and kept in my phone for months because it’ was very uplifting to me I was diagnosed with FAP I had over a 100 polyps in my colon and rectum I had a colectomy on 12/15/15 I was on a ileostomy just now on 2/19/16 I had my reversal takedown I won’t lie I’m scared and very emotionally the bathroom situation is hard and very painful the Imodium pills are taking a toll on my stomach but I was told from my surgeon to stop them for a day because of too much cramping and spasms I know it’s all very new for me but I was just hoping on a few words of advice and encouragement as well thank you so much
Sonny,
As my story told the first 30-45 days post takedown were pretty agonizing (sometimes), but as my doctor told me the 6 week mark was really the date a lot of that went away, and sure enough almost to the day it did for me! Hang in there till then and I’m sure you’ll be fine, it’s a long road but definitely the right decision and option!
Life for me is pretty much back to normal. Still use the bathroom (#2) 6-10 times a day, but if I eat a small and earlier dinner I have no problem sleeping all night. I’ve got some consistent pouchitis I’m dealing with, experimenting with different antibiotics and such to knock it out. Like most people I need to eat better, get more sleep, and exercise – then I can hopefully not rely on the meds to control the pouchitis.
Believe it or not the worst is already behind you, don’t doubt your decision, and look forward to a better tomorrow!
Thanks for the information . I’m on my 3rd part I go tomarrow April 27 2016 . It’s been an 8 month run I had 1st one on September 2 2015 the next on January 25 2016 . Like you my wife and son were very supportive without them things would have been much harder. My son is 9 and the surgeon would explain everything to him that helped. I’m doing all this at Columbia hospital in NYC . Dr Steven Lee Kong is dong a great job . If anyone wants to talk about it they can email me at eddie.pet@hotmail.com thanks and this sight is great of been on it before.
Baker!
Thanks for your story! Amazing!!
Just wondered how things are going years after with the pouch?
Hope life is going well with you
I’m 5 weeks post pouch reversal. Struggling a bit, but hopefully will get better soon.
I’m in pain on the toilet sometimes, and feel an ‘ache’ when and after I go to the toilet, and sometimes a bit of blood too.
It feels inflamed down there but hopefully it will go with time. If not it could be mild cuffitis maybe.
Anyway thank you for your story
Chris
Chris,
You’re very close to crossing the magic (at least it was for me) 6-week period, that’s when I really started noticing the difference. It is frustrating as prior to that (my whole life) I’d never experienced such a lengthy recovery, sports injuries and such, however I guess it speaks to the enormity of the whole J-pouch procedure. Hang in there, stay positive!
I think the ache and blood is very typical with all the reconstruction that went on down there, that too will end soon. And soon you’ll have visual confirmation when you go in for your first pouchoscopy at between 10-12 weeks. Not that most pleasant of experiences but good for piece of mind once completed.
Life is very good for me, different, but very good. More trips to the bathroom, no surprises there but at least they’re controlled and at my discretion. What I thought was originally cuffitis (or maybe it was) is now been confirmed (or changed) to be pouchitis. It’s not bad but still creates small amounts of bleeding and occasionally some more severe symptoms like fatigue. The good news is there are plenty of drugs to treat it, antibiotics like Cipro and Flagyl, probiotics, slow release steroids like Uceris, etc…. Like most “normal” people with colons I need to lose about 10-20 pounds and exercise more, it’s nice to have normal problems again!
Best of luck, let me know if I can help or answer any questions!
I am about eight days out of takedown surgery and my j pouch output is all over the place yesterday was twelve and like peanut butter today in 4 hours I’m at 6 movements and liquid and I’m not really sure what to to slow it down and definitely don’t know what to eat I’ve becom frustrated at this point and the 10 of April I’m supposed to travel from my home to Florida for vacation and don’t know if I’ll be able to with out wearing depends or not
Sorry I never got a chance to reply to your post, the update must have gone to my spam folder and I honestly don’t check the website often anymore – how’s things going?
-Chris
I realize your surgery was years ago, but i came across your blog posts while researching the jpouch surgery for my 12 year old son. He was diagnosed with Ulcerative Colitis in April 2017, and so far Steroids and Remicade have not helped (i think they are mocking us!). Repeat scopes are unchanged. So we are getting a surgery consult.
I just have to say that your posts have helped, as a mother, to mentally prepare for whats ahead. I know everyone is different and the experiences can vary, but at least having an honest idea of our road ahead is so helpful. I definitely don’t feel like i’m walking into this blindly at the mercy of hospital staff. I’m sure there’s a lot that we still really have no clue about, but Thank you so much for sharing your experience and know that it has brought some peace in making this very difficult decision. Continued success in your journey!
Good luck and thanks for leaving a comment! It’s a long journey but worth it. Where are you considering having the surgery done at? There are certainly some really good places like Mayo (Rochester, MN) and Cleveland Clinic, I looked at them but with the back and forth decided to stay local – it’s worth considering if you can make it happen.
I’m still very involved in the local CCFA organization, I’ve been their top fundraiser for a few years running now, all because of the hereditary chances of the disease. I’ve got a 5 and 3 year old and hope they never have to deal with what your son and / or I had to go through, or if they do the advances in medicines are better by then!
Have you tried any of the other biologics or new medicines yet, I wouldn’t give up yet, you always have the surgical path but as you already know it’s a tough one.
Good luck!
-Chris
Chris, Hes scheduled for surgery next month. He has already had a very difficult year. Our next option for meds were Tacrolimus and Entyvio, but our GI explained that they have a diminished value of working, and we would likely end up right back at the discussion for surgery, within the year, But ultimately it was up to him and us to say, enough is enough with the meds, we’re done. And my son, is done.
He knows it will be a long and difficult journey, but he wants to get to the point of feeling better, and being himself again. (as close to that as it can be).
We felt it made more sense to do the surgery before weakening his immune system further or his condition declined even further, thus making the surgery and recovery potentially more difficult.
So while he is “healthier” we opted to move to surgery.
Its such a hard decision to make, but His dr and surgeon are some of the best here in NC, so we are confident in their recommendations.
Thanks again, I appreciate the support!