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It's 4 days post take-down, came home from the hospital today, and am happy to report I am doing very, very well!

I went into the hospital on 10/10 for three pre-surgery tests. The doctors and nurses at the hospital have been with me from the beginning, and through the worst of my days, and they were all so happy to see me, as well as excited for me to finally be at the point of reversing the ileostomy. I was admitted to the hospital after all of the tests were completed, and my husband and I enjoyed a quiet evening watching the Giants beat the Reds. Yes, I live in OH, but am originally from CA. Smiler

The morning of surgery my nurse woke me up and gave me a valium right away to help with my anxiety. I changed into my gown, and shortly after was wheeled down to the operating holding area. All of the nurses and staff on the SIU (where my room is/was) were shouting out things like "good luck, Dove", and "see you soon, Dove" as I was headed out. All of these people know what I've been through, and they filled my heart with love knowing they were all rooting for me.

Once down to the holding area I ran into more folks that I've seen on several occasions thanks to this process. For those that don't know, or don't remember, I have a port because of how bad my veins became over the past year due my illness and surgeries. Not having to go through the IV process pre-surgery is wonderful, and it felt like no time at all before I was given my "margaritas" to really relax me. Before I knew it I was in the OR, and the next thing I remember is waking up.

When I woke up I asked one of the nurses if they had been able to just use my stoma site, or if they had to open me up midline. They told me they were able to use the stoma site, and at that I started to cry a little. Basically nothing had gone the way I hoped for over the last 8+ months, so this was a BIG win for me. Plus, Thursday was also the one year anniversary of my 19 year old brother passing away from a brain tumor, and so I was just emotional in general as I felt he was with me in a very special way during surgery.

I wasn't in too much pain....felt more sore than anything. Of course, as anesthesia wore off I began to feel more pain, but nothing that couldn't be controlled with dilaudid. I was able to get to clear liquids fairly quickly that day, and had some cramping as the liquids moved through my system. I tried to walk once, but it made me very nauseous, so I decided to not try to walk again for the night. I had a catheter, and my bowel didn't wake up the first day, so it wasn't necessary for me to walk right away. The first night I woke up once with some cramping/spasms that were pretty uncomfortable, but a shot of dilaudid and valium took care of them pretty quickly and I was back to sleep within 30 minutes.

The second day my catheter was removed, and so I got out of bed more to use the restroom and walk in hopes that my bowel would wake up and I could start using my jpouch. We decided I would stay on clears until I had my first BM. I should mention that I had prepped my bottom liberally with calmoseptine, placed a cotton ball in between my cheeks, and wore an extra long panty liner in case I would leak before I could get to a toilet. I slept a lot of the day, but finally had my first movement in the late afternoon. It was watery, but not painful at all. I had full control, and never had a sense of urgency that I was going to have an accident.

I've developed a routine after using the restroom where I wipe with wet wipes, dry with soft TP, and then liberally apply calmoseptine. I'm not using the cotton ball in between my cheeks anymore because I'm not having any leakage issues at this point. I have yet to deal with any butt burn. My stools are somewhere between watery and soft, but I've had no trouble holding it until I get to the bathroom. I have had some cramping and gas pains, but nothing valium or percocet doesn't help. I anticipate these getting better as my system gets used to having food move through it over time.

Foods I have eaten so far with no trouble are chicken broth, jello, applesauce, mashed potatoes, rice, gluten free waffle with peanut butter, gluten free pretzels, yogurt, breeze drink (by Boost), and almond milk. I had gluten-free mac and cheese (Anne's; the boxed brand) tonight, and I seem to be having more gas. I'll probably hold off on that again for a little while. The gas isn't horrible, but still would rather avoid it if possible. I'm also taking a probiotic.

I never thought I would be doing so well so soon. I feel very, very blessed tonight. I'm at the point where I don't know how to thank every one who has been a helpful resource along the way. I found this group less than two months ago, and at a time where I was really dreading this take-down surgery. Thank you to every one who lifted me up, and have answered the many questions I've had. I imagine I'll have more as time goes on, and I hope to help people here as I am able to. I'm here to say it can go very well. Who knows what , if any, hurdles lie ahead, but for tonight I really couldn't ask for things to be any better this early on.

I'm super sleepy (I forgot how much I sleep post-surgery...for weeks), and I'm trying to keep an eye on the Giants-Cardinals game, so I want to get going for now, but I will be back in touch soon.

Peace to you all tonight!

Replies sorted oldest to newest

Thanks, SBS! I appreciate you taking the Giants side, too. If you can't beat 'em, join 'em, eh? Smiler

Almost embarrassed by how much I've been sleeping, but it feels so good, and I know from the past how much it helps me heal.

Haven't tried any new foods today, but haven't had the appetite or the desire anyhow. My husband is bringing home a casserole someone made for our family tonight. We'll see if it's gluten-free to begin with, and then what else is in it as to wether or not I try it.

Took a real shower for the first time in almost a week, and then changed my wound dressing. I still can't believe I had a stoma coming out of there for the past 34 weeks. I don't miss it a bit.

I walked to the mailbox and back today. I live in the country and have a long drive, so it actually is a feat. I would probably try to walk longer if someone were home, but my husband would be distressed if he knew I were out walking by myself so soon after surgery.

Today is the first day I'm not using any pain meds, and I'm doing okay with that, so don't anticipate needing to go back to them at this point. Again, such a nice change of pace after needing them for so much longer after the first two surgeries.

I'm one happy camper at this point, and just pray my recovery continues to build on the great start I already have.
runner4449
Wow, thank you so much for posting this. I really enjoyed reading the details since that will be my next step in a couple months. Great to hear that you are not (yet) having any issues with leakage or butt burn, which are two big concerns of mine. I have also heard that take-down can be a little traumatic after the ease and freedom of the ileostomy, so it's nice to hear how well you're doing. Please keep us posted on how the recovery continues!
bootstrap
Hi Bootstrap,

I'm happy to give the details even though I almost feel guilty that things are going so well for me. I had lots of trouble with my ileo, and didn't have the freedom and ease most people feel with it. I was thankful to have it in the sense that it saved my life, and made it possible for me to do the j-pouch surgery to keep from having a permanent ileo. However, I was not sad to see it go, and that was when I was anticipating butt burn and leakage issues...neither of which I've had yet. I'm not sure whether or not I fall into the very lucky category, or if more people tend to be here because they are having issues and looking for help/support. I know that I found this group about 6 weeks before my take-down when I was really struggling with my situation, but I intend to stay on this forum to give help, hope and encouragement to others when possible.

I'll update some more as I more time goes by, and especially whenever I start running again. In the meantime, I hope you are doing well so fresh off your surgery, and that the next couple of months are good for you as you prep for your take-down.

Take good care!
runner4449
I found your post to be incredibly helpful! I have 5 more days until my take down and I couldn't be more excited and nervous at the same time. So far these 8 months with the bag have been complete hell and I am hoping they will get better with the take down. My biggest worry is having accidents or having to have a bm about 10 times a day since I have to empty my bag so much. I hope your recovery goes smoothly!!!
Akk3769
Akk3769 - Sounds like our stories are similar. I also felt exactly like you; excited and nervous. I also was constantly emptying my bag, and my two biggest fears were having accidents, butt burn, and frequency in which I would need to use the restroom. So far I haven't had an accident or butt burn, and I'm already down to using the restroom 5 times or less. It's impossible to say where you will be after your take-down surgery, but I sure hope you'll be close to my end of things. It sure is a blessing I do not take for granted that things are going so well. My biggest issues right now (and they're not big) are I'm sleepy, have low energy, and my wound at the stoma site is sore. The wound is healing nicely though, and I know it'll be a relatively short amount of time before it's closed. I also know in time my sleep schedule will be more normal, and I'll eventually have the energy I once did. Patience and perseverance are key, and I pray for it every day. Good luck to you, and keep us posted on how you are doing after take-down as you are able to.
runner4449
Dove-
I have heard that the success of the surgery often lies with the quality and experience of the surgeon. Could you tell me a little more about the particulars of your j-pouch surgery? Specifically, do you know how much of your rectal cuff was left in-tact (in inches or centimeters) and whether or not it was stripped? This seems to be one of the few variables in this type of surgery where surgeons will differ in strategy, and from what I've read it can have a pretty big impact on continence. If you're not sure what I'm talking about, check out these two links:
Rectal Cuff Diagram
Rectal Cuff Study
If your surgeon never told you, is there any way you can find out? I'm just curious since your surgery seems to have been so successful... would like to know if the rectal cuff issue played a role in the success of your surgery.
bootstrap
Chasingtime - I'm eating a gluten-free diet, which is a diet I've followed since shortly after being diagnosed with UC in 2006. I've pretty much eaten foods I feel safe with right now; applesauce, mashed potatoes, gluten free pretzels, gf toast with butter or almond butter, Udi's gf blueberry muffins, Anne's gf macaroni and cheese, bananas, yogurt, almond milk, and a protein shake made with Trader Joe's hemp protein, almond milk, banana, almond butter, and pure vanilla. Tomorrow I'm going to test meat for the first time because we are taking our oldest daughter out for her birthday dinner. I'll probably order a plain piece of baked or grilled chicken.

Bootstrap - I do know that part of my rectal cuff is in place, but for the life of me I can't remember how much he left. I'm pretty sure he didn't strip it. I have a follow-up appointment with him on Monday, so I will be sure to ask him for the specifics.

Akk3769 - My husband is in the Air Force, so all of my treatment has been at Wright-Patterson AFB. My surgeon has actually only done a handful of these surgeries outside the training he received at UCLA to become a colorectal surgeon, but so far his patients have had remarkable results. A lot of people were leery about allowing him to do this work on me, but you don't get to 150-200 of these kind of surgeries under your belt unless you start with 1. I was okay with him from day one because he has been honest with me, he's intelligent, a skillful surgeon, and compassionate. None of the complications I had after steps 1 and 2 were due to his surgical work. They were problems that developed (like abscesses) that were beyond his control. He has also said that he would send me to Cleveland Clinic in a heart beat if at any point he felt they could provide me a better outcome. His goal all along has been to give me as much as my life back as possible. He knows how important certain things in my life, like running, define me, and he has kept those things in mind throughout my treatment. In fact, he plans on running my first marathon back after this ordeal with me. Anyhow, I've been happy with him, and he hasn't given me any reason to believe I'm not receiving excellent care.

I'll post again after my follow-up on Monday. I'll start a new thread for it. Have a great weekend, everyone!
runner4449

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