I apologize for not posting an update sooner but since my 6 week surgery mark I’ve been back to work and then the holidays hit and between both I’ve been extremely busy. It’s an excuse but I’m going to try my best to detail my post hospital experiences to this point.
10 Weeks Since First Surgery
I’m now about 10 weeks out from my surgery and my takedown is scheduled for Thursday January 3rd. I had debated doing the takedown in early December but it was early and I wanted to avoid ruining the holidays with my family. Things have gone fairly well, I’ve had some further minor complications and living with an ileostomy is definitely an adjustment that takes some getting used to. It’s not as bad as one might think but it can be a royal pain at times, I’ll explain later. I lost about 20 pounds in the hospital and I’ve maintained my new lower weight plus or minus 5 pounds. A lot of people comment that I look good as I’ve lost the weight (I needed to lose the weight!) and I tell them I have a new guaranteed weight loss program, it’s a real doozie but it’s guaranteed to work! Haven’t had any takers yet!
Slight Complications and Recovery
There was one point I forgot to mention during my hospital stay and I wanted to revisit it as it’s continued. On about the 10th or 11th day in the hospital when my bowels began to function I had my first bowel movement in addition to the output through the ileostomy. It was a mucous like substance. It occurred about once a day for the next few weeks and I was told it was completely normal. After about 4 weeks, and once home, I noticed it was a little more pink in color and it increased to 2-3 times per day, often accompanied by a feeling or needing to go but I was able to hold it for a long time. Occasionally I would notice a darker red drop indicating blood. It’s worried me some but I talked to my surgeon about it and he was not concerned at this point. I asked him if it could be cuffitis and he was doubtful saying that the cuff is so small these days with the new surgical staples. I asked about pouchitis as well but with no other symptoms, it too was ruled out. He mentioned it might simply be inflammation from lack of activity, he said that sometimes happens. He did not want to do a scope nor did he think it warranted delaying the takedown. Oh yeh, another note, your bladder control muscle or nerve is clearly closely related to your sphincter control. It might be something we take for granted but after my surgery when I would pee I would sometimes need to sit down quickly, it can be controlled but the more you need to go the harder it is.
As I mentioned in my last post I was elated to get out of the hospital and get home. At first I think from sheer exhaustion I actually slept and got some quality rest. At first I was still dealing with a lot of soreness, lack of energy and drive, and probably a little depression. After a few days once I got caught up on sleep my sleeping problems started. I had trouble falling asleep at night, I was worried about rolling on the bag, I certainly had some anxiety about the surgery and it’s long term success (questioning my decision, etc…), and maybe a little post-traumatic stress disorder (PTSD) after my hospital experience. I’ve never been a great sleeper but I would be exhausted and go to bed and it would take hours to fall asleep. Add getting up every couple hours to empty my bag and it was pretty miserable for a few weeks. I still have trouble sleeping, especially after a bag came completely loose a few nights ago, but I seem to have adjusted and it doesn’t bother me as much anymore. I was always a restless sleeper and often slept on my stomach so I look forward to post-takedown being able to do that again.
In the recovery from this surgery, especially if you do the 2-step, the 6 week mark is when you really return to close to normal, to those that have done it quick, you’re lucky and my hats off to you! My surgeon had mentioned this to me and sure enough at 6 weeks my energy levels returned to almost normal and the pain / discomfort were almost minimal. There are still a lot of things to get used to but it was a milestone time for me after a tough first couple weeks.
Getting Past Seromas
With my open surgery I had a mid-line incision from about 2 inches above my belly button to just above my pubic bone, in total about 10” long. The incision was stapled closed and looked great at first and immediately after staple removal. It was healing well but I developed 3 separate seromas. They are pockets of serous fluid that develop along the incision, kind of like a blister. I noticed them about a week after hospital discharge and showed them to my GP (General Practitioner) doc, he told me what they were but I had an appointment with my surgeon the following day so he didn’t do anything. The next day my surgeon quickly took action and somewhat surprisingly popped two of the seromas with the blunt end of a sterile wooden swab, yikes! He then swabbed out each pocket. It didn’t hurt but the sight of him plunging it in and then cleaning up the clear / bloody fluid was a little scary. I was then instructed to “pack” the wounds twice daily, using slightly less each day as the wound closed from the inside out, not the other way around. Wound packing is not hard or painful but was definitely not something I was expecting nor looking forward to. The surgeon thought the 3rd seroma didn’t look as bad as the other two and he left that alone, however I had my GP open and drain it a few days later. The first two healed within 2-3 weeks but the last one turned out to be the deepest and took almost another 5 weeks to heal. It actually healed on the outside to the point I had to buy some sharp tweezers to pack the wound during the last week. Seromas are common with abdominal surgeries and since the “open” style j-pouch involves such a large incision they are more common. My surgeon also told me to apply Vitamin E (cut open a capsule) to the scar twice a day to help with healing and reduce the scarring.
As I mentioned in my last post I was diagnosed with a portal vein thrombosis, basically a blood clot in the portal vein that leads to my liver. I went home on a Lovanox “bridge” with a prescription for Coumadin. I had to continue using the Lovanox injections twice a day until my INR (blood thickness level) was at a therapeutic level with the Coumadin. It took a few weeks getting my dosage correct, plus a couple visits to my GP doc every week to test my INR. I’m now alternating 2mg / 3mg every day. I will be on Coumadin for the next 6 months. I have to stop the Coumadin 5 days prior to my takedown surgery and use the Lovanox injections again, and then skip the Lovanox the morning of my surgery. I guess the Lovanox does not last long and quickly stops working where as the Coumadin last longer and thus can’t be used close to surgery. Post surgery and after discharge from the hospital I’ll continue to use the Lovanox and start the Coumadin again. I was told they can be used together as they work completely differently.
No More Remicade, Prednisone or Imuran
One of the already great results of my first surgery is the fact that I haven’t taken Remicade, Prednisone, or Imuran since. And while there are still other challenges to face it feels GREAT to not have those things flowing through me! I’ve lost the slight moon face I had thanks to the Prednisone and while Remicade was a very effective drug it scared me! I can’t wait to drop the Coumadin as well! I took Nexium for a while but I didn’t see any noticeable difference and stopped taking it a few weeks after I left the hospital. I might consider taking it again after takedown to reduce acid burning on my rear!
Living with an Ilestomy and Bag
Now on to the most daunting part for most people, living with an ileostomy and bag. Overall I would say it’s not as bad as I expected, although I am very ready to get rid of it. The output from the ileostomy is pretty watery, it does thicken up occasionally and I’ve experimented with Metamucil and Immodium to try and thicken it up. The nice part about the bag is that you can see what’s happening and you should use this opportunity to tweak your diet, fiber, supplements, etc… so you are best prepared for takedown. I am told the lower portion of the colon removes more fluids so after takedown it should help and that it will get progressively better over time. I have used Hollister products exclusively and they have a nice “start-up” program. My hospital wound and ostomy team recommended it, but I have heard a lot of good things about the Convatex products. I did not try them so I can’t compare them but you might want to ask.
I have had 4 accidents with my bag. The first was my fault as I did not fasten the Velcro like seal properly and it simply popped loose. The next leak was a small one under the skin wafer during the middle of the night, miraculously I noticed it quickly and changed it in the middle of the night. The final two were full out bag separations and very messy! One was while I was driving and had a very full bag, helped along by my seat belt. The second was another full bag as I slept and all I can assume is that I rolled on it or it snagged on something as I rolled and pulled loose. While it doesn’t happen often you need to be prepared for this and have an emergency kit readily available. My ileostomy is located about 3 inches to the right of my belly button so it’s fairly high. The bag hangs down about 8 inches so it is tricky dealing with seat belts and pant waistbands. I’m not sure what others do but I don’t tuck it in, I try to wear long baggy clothing (sweatshirts, jackets, sweaters, etc..) so that I can let it hang over my waistband. There are products they make (like Stomaplex) that allow you to place your waistband over the ileostomy but I didn’t try them. If you do tuck it in your waistband can squeeze the bag and reduce its holding capacity. Due to its location I empty it by kneeling on one knee in front of a toilet bowl, I then clean it with a toilet paper torpedo or two and then wipe the end clean. This is pretty easy when things are watery and more challenging when it’s thicker. As many people have recommended, I like to place a single layer of toilet paper over the water to avoid splashing. I would guess I am emptying my bag 10-15 times a day on average. That alone makes thinking about the takedown scary but I’ve read others had similar experiences with very good results post takedown. I can’t say I’ve had anybody notice the bag, even with the way I wear it, and most people are shocked I even have one. I try to change everything every 3-5 days, and I’ll change just the bag every 2 days.
Mornings work best but you always have to be prepared for a little stoma surprise. My wife has been a saint and helps me with this, we have our routine down and once we have everything laid out and prepared we can change everything within a few minutes. I shave around the stoma every other change. I had some skin irritation at first but with some skin powder and prep and cutting the wafer and forming the ring (I also use an adapter ring under the wafer) very precisely around the stoma this has gone away. While the ileostomy certainly comes with some challenges and getting used to it has also dramatically reduced my anxiety about things I used to really worry about. For instance driving, busy restaurants, etc… I find I’m much more relaxed if I get stuck in a traffic jam or if I’m having lunch at a restaurant and notice a line for the bathroom.
Diet After Surgery
From a diet perspective I was on the low-fiber, low-residue diet for a few weeks and then I started introducing other foods. With a clear ostomy bag you can tell what your body is processing and what it isn’t so you can adjust your diet accordingly. I haven’t had a salad since my surgery but I’ve eaten just about everything else, even things I probably shouldn’t be eating like beans and nuts. I’ve had Mexican, Indian, BBQ, spicy buffalo chicken wings, pizza, and just about every other food I used to east prior to surgery. I haven’t had any bad obstructions but I’ve had a few afternoon “gut bombs”, my doctor calls them a “food bolus”. The worst was after devouring a bowl of chicken and rice from Chipotle way too quickly, about an hour later I felt an uncomfortable bloated feeling in my abdomen. That one lasted about 6 hours and finally went away after I drank two bottles of water. I’ve had others after eating too many chips, or too much bread, too quickly but they only last an hour or two. I’m a very fast eater so I have to really force myself to slow down and chew more. These have only happened after lunch so I also think sitting at a desk contributes to the problem, I try to walk around or be active after most meals to help move things along.
Getting a Pouchagram Study
Before take-down, everyone must get a pouchagram study done to test the integrity of the new J-pouch. I had mine a few weeks ago. I believe it’s quite common but there was confusion at the Radiology department prior to my tests. They don’t do a lot of pouch studies so in my case the doctor had to check the box for a gastrografin enema study. People with colons do these and they have to drink a prep solution and then take an enema prior to the test. If you have a j-pouch you don’t have to do any other this. I was told numerous times I needed to come pick up my bowel prep and had to talk with numerous people before we cleared things up. It started with stripping down and taking a couple standard abdominal x-rays. Then I went to a different imaging suite for the real study. You lay on your back or side and they insert a tube in your anus, they then slowly inject the contrast solution to get clear images but also to “inflate” the pouch. They don’t use much, maybe 100-200cc total. I was worried about having to sit on the table feeling bloated and ready to explode. In actuality it wasn’t bad and I did not feel and urgency. Matter of fact they wanted me to try and go on the table as I lay on my side so they could watch the pouch as I evacuated it. I couldn’t do it, not sure if it was 39 years of training to avoid situations like that or just the position. I used the restroom and passed some of the solution and then got back on the table for more images. The images looked good, no leaks, and good pouch function. I was really dreading this test but it wasn’t bad at all and the radiology team was very friendly and fun and made the experience almost enjoyable, one even angled the screen so I could see the images and explained what everything was!
I hope to have another detailed report on my takedown surgery in a few weeks. I’m looking very forward to a UC and drug free 2013! Happy Holidays!
written by Baker
( Other stories you may be interested in: UC’ers who already have had their J-Pouch Surgery)
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.
Thank you so much again for adding such a detailed account of your progress after your initial surgery. What do you think, another few months and we’re going to hear a story about you knocking everyone out at a an Ironman triathlon somewhere???? I think that day is coming!!
Congrats to you, the same to your family for being so supportive during your transition period, and I wish you nothing but the very best on January 3rd.
I cannot thank u enough for writing this now. I had my first surgery on 11/16 and things didn’t go smoothly. I was in the hospital for 14 days with complications like a blood clot, needing 2 blood transfusions, lots of pain, etc. Reading about your experience was such a relief…I think I’ve experienced everything u did. They didn’t warn me about the mucous…I thought things had gone horribly wrong! I also have the sensation that I have to poop when there is mucous. I’m glad u were detailed about the color! So far, I haven’t seen pink or red, but I would’ve freaked if I did or do. I also empty the bag the way you do, although I think you adapted to the bag easier than I have. I get such anxiety about it: leaks, rolling on it by accident in my sleep, changing it. It’s so gross to me, I can’t stand it. I was relieved to know that you had difficulty sleeping, too. It’s almost 3am, and I’m still up. I never had a hard time falling asleep before, but since my surgery, I often do. My hospital stay was unexpectedly very traumatic for me, and I also think I have a little PRADA and definitely some depression. You’ve given me hope w the 6 week mark milestone that u had. I’m there now, and hoping so much that that happens to me, too. I have to go back to work on 1/9 and I’m petrified of how I’m even going to get myself there. And thank you SO MUCH for talking about the procedure that u had with the dye. I can’t tell you how anxious and terrified I am of that. My appt is on 1/10. I’m petrified that its going to hurt and so scared they are going to find a tear or something. I’m glad you didn’t think it was so bad. I’ve been dreading that since before I even had the surgery!! :) Again, I can’t tell u how grateful I am that you wrote and I wish you every ounce of luck for your takedown surgery. I pray all goes perfectly. I’m very jealous!!
Haha…PTSD, not Prada!! Wish I had that! ;-)
Hanks for giving your detailed update. Wishing you all the best on Jan. 3rd and a Happy and HEALTHY-ER New Year! :-)
Hanks??..thanks!! Can’t this thing ever correct what you want?! :-)
Yey…no more harsh meds!! That’s worth it alone.
Good on you Barker!!
All the very best to you and your family in 2013…this is your year!!! Enjoy…
Baker, All the best on January 3, and the days, weeks, months, years, and decades after. You have earned it.
Thank you so much for sharing your surgery story. I may end up needing surgery. I am waiting to have an antibodies lab test done on January 14 to check how remicade is working. I have so many questions and concerns about surgery so its great to read about someones experience so thank you so very much! Good luck to you on January 3. I wish you all the best for a very healthy new year.
Thank you for writing about your experience. Your story and numerous others have helped me tremendously. I’ve had UC for 9 years. The first step of my jpouch surgery is scheduled for January 15th. I’m getting anxious about the surgery and am excited about the future without UC. I will try to document my journey to share with others because it has been helpful knowing what other UCers deal with. I will pray for you tomorrow that your surgery goes well and you recover fast!
Thanks for sharing your story.
I have UC myself, of which I was diagnosed Jan. 2012, and was hospitalized for 3 months last summer…which was not fun at all.
Dr. has told me I may need a surgery in future and now I am on immuno-suppressant, which scares me to death of common infections, and I am sure I would need a surgery if I get a flu or something.
I have an appointment with the surgent next week, I am scared that I may end up with permanent iliostomy in the worst case scenario.
I was wondering how have you been doing so far, and if you have any updates you could share.
I hope you are doing, and look foward to your super detailed updates!
I’m very well! I’m overdue to post my takedown update, hopefully I’ll get to it this week. But overall I’m very happy with the results, rough road but for me and most others that end up having surgery well worth it!
Hi Baker, thanks so much for your reply.
Nice to hear you are well and most importantly happy with the results!
Look forward to your super detailed updates soon!