Time For Surgery

Baker’s Previous Post: UC Journey to J-Pouch

Time For Surgery:

As a follow-up to my original post, I wanted to write-up my experience investigating and ultimately coming to the conclusion that I would proceed with J-Pouch surgery. As I write this I’m now 4 days away from my first surgery, still very nervous but also excited to get it over with. I booked the surgery almost 4 months ago so I’ve had plenty of time to contemplate and worry about the upcoming procedure. I wanted to enjoy the summer and help my wife with our new son. I’m not sure if I’d recommend scheduling something that far out as it’s way too much time to ponder and contemplate.

Baker family on lake

Baker’s family on the lake

Ironically, I’m very well controlled right now to the point it’s somewhat surreal to believe I’m going in for surgery in a few days. However as my surgeon pointed out that’s the best time to have surgery, when you’re healthy and strong, I guess he’s got a point. One of the challenges I had and discussed many times with multiple doctors was when is the “right” time to have surgery? The answer was pretty consistent in that every person has a different rationale and thinking. One doctor told me he had a patient that as soon as she was diagnosed with UC, during a relatively mild flare and before starting Asacol, opted for the surgical option. In other cases people wait till they’ve exhausted all options before going under the knife, unfortunately in many of those cases it tends to be an emergency. I agree it’s really different for each person based on their symptoms, lifestyle, response to meds, etc&hell ip; My wife and family were onboard with the surgical option long before I was as it’s probably a little easier for them to look at it analytically, however they’re not the ones going under the knife!

For me ultimately it was the combination of my son being born and thinking ahead to times spent with him, combined with some scary med side-effects, and finally just being tired of the day to day UC symptoms. Up to my surgery and for roughly the last two years I have taken Remicade, Prednisone, and Imuran in varied doses to control my UC. About a year ago I developed one of the scarier side-effects (or at least we think it was a side effect of the Prednisone) in the form of chest pain. At the time it started as soreness in / on my chest but would occasionally be more of a shooting local pain. Having never had any chest pain it scared me to death and I worried about it non-stop. I went to the doctor and had the chest x-ray, EKG, and ultimately a cardiac stress test. In some cases the pain combined with the worrying would lead to other symptoms like light-headedness, dizziness, tingling in the arms and shoulders, etc… All also heart related sympto ms and very scary. After passing all the tests with no problems our best guess is some sort of “costochondritis” or rib joint inflammation that led to a panic attack of some sort. I still don’t have a definitive answer but the doctors agree it’s likely related to all the meds I take.

Once you commit to having the surgery there is still a lot of work to do. For me that included getting all the information and finding the right surgeon. I probably over did it and in the end my conclusion is it’s very hard to judge one surgeon better than others, there is just no readily available data you can use. Ultimately you have to go with an experienced surgeon who you like and feel comfortable with, and it helps to have them close to home and family for support and follow-up visits.

In my travels I went to the Mayo Clinic (great place but just too far away for travel and my family), University of Virginia, Medical College of Virginia, and a local GI group. My referring GI doc (doesn’t do surgery) referred me to the local group but he openly admitted he couldn’t recommend them over anyone else. I was motivated to find the best surgeon for me and my situation. Ultimately I could have interviewed 20 surgeons and still wouldn’t know if one was any better than another. Some of the surgeons seemed a little confused that I was consulting multiple surgeons at first, I guess most patients are referred once locally and that’s it, however all were very informative and helpful. One resident doc who saw me before the surgeon did tell me that if he were me he would have done the same thing!

marathon in KISS costume

Baker running in KISS costumes with some friends

Another consideration is the number of surgeries and type of surgeries. As most people know there is the 3-step, 2-step, and 1-step options. From my experience the 3-step is typically used for those who might be in a severe flare or have health that is otherwise compromised (it was interesting to read Blake’s post about 3-step having less risk of ED, I had never heard that before) so that there is more time to heal before the next surgery. The 2-step process is the most popular and for patients in fairly good health in which the colon (and rectum) is removed and the j-pouch is created with a temporary loop ileostomy and then “taken down” 6-12 weeks later. The 1-step includes does not include the temporary ileostomy but there is a much higher risk of leaks and possible infections, not to mention permanent failure of the pouch. All the surgeons I consulted with agreed the risks of the 1-step far outweighed the benefits and thus 2-step is prefer able. I wish the 1-step was more acceptable and less risky as I’m not looking forward to my ostomy but if I’m going to do this I’m going to do it right the first time!

The next decision is what type of surgery, open, laparoscopic, or hand-assisted (basically a blend). Open means a large incision in the lower abdomen. Laparoscopic typically uses 4-5 minimally invasive entry sites. And hand-assisted is a few small laparoscopic incisions and one larger opening in the lower abdomen. As I understand it hand-assisted means they use the laparoscopic technique to remove the colon but then use a smaller “open” technique to create the j-pouch. The Mayo Clinic surgeons all used the hand-assisted technique and seemed to have pioneered the method. Most of my local surgeons used the “open” technique which at first made me think they weren’t as current as the Mayo doctors. However as ED is a concern of all men having this surgery, their argument was the more room to work, the less likelihood for problems. That argument seems to make a lot of sense for me and I’m not worried about scars. The y did mention younger patients and women who might be more concerned with scars often opt for the laparoscopic or hand-assisted alternatives. Of course you can add the ostomy and drain line incisions / scars to all of the above.

Here was a list of questions we came up with to ask each surgeon:

-How many J-pouches have you done? How many do you do a month?
-What is your complication rate? Leaks, infections, ED, failed pouch, etc…?
-Have you ever hand sewn a pouch (I was told this is relevant in case the stapler breaks and they have to do it the old fashion way)?
-Do you make rounds after surgery or do your student docs (typically only at teaching hospitals)?
-Time in hospital, healing time and / or recommendations?
-Time between surgeries?
-Board certification or accreditation?
-Is there any thing about my specific case that concerns or encourages you?

Like most patients I’ve asked a lot of questions and done a lot of investigating about the ostomy. I’ve looked at all kinds of pictures and videos to help me prepare for the sight of my intestines sticking out of my body spewing god knows what! I also wore a 2-piece bag one weekend to get the feel for it, something that was deceivingly easy and not uncomfortable at all, however I know that vs. the real deal will be a very different experience!

I’m also trying to take an inventory of all the tubes that might be poking out of me (or in me) after my surgery so I’m not surprised. So far I have accounted for the following: IV of course, bladder catheter, drain tube or two, ostomy, possible epidural, possible nose tube to drain stomach fluid?, possible rectal tube for pouch drainage? Ugh, can anyone confirm this?

I am still debating my pain control options post-surgery but I’m sure I’ll have much more to post on this later this week. My doctor said he recommended an epidural as it controls the pain my consistently but I’ll have enough tubes and needles stuck in me, if I can avoid one I would. I would also like to get up and walk around as soon as possible so I’m not sure if the epidural limits this. I also consider myself to have a fairly high pain threshold (easy to say now!). At this point I’m leaning towards an epidural if my surgeon recommends it; if he’s indifferent I’ll opt to not use it. Any advice?

At this point I’ll I’ve got to do is get on with it! I’m committed to seeing this through for me and my family and so I can return to a normal life.

written by Baker

submitted in the colitis venting area




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12 Responses to Time For Surgery

  1. Bev October 11, 2012 at 5:19 pm #

    Hi Baker…

    it’s going to be all good, I just know it. Your outlook and attitude point in that direction! I think it’s fantastic that you chose to have the surgery, despite the fact that you are feeling relatively ‘good’ at the moment. A whole lot less complications that way, I bet.

    Cheers, and please keep us all in the loop! I would consider surgery BEFORE going on any more of the UC merry-go-round of horrible meds…seriously!

    Bev:):):)

  2. Lisa OH
    Lisa October 11, 2012 at 5:58 pm #

    I agree with Bev. Those meds are scary! Hope you heal quickly!
    Lisa

  3. Jed
    Jed October 11, 2012 at 6:00 pm #

    Very interesting story and a brave, solid decision on going forward with the operation option. Good man.

    I wonder if you ever tried/thought about trying the SCD diet?

    • Baker
      Baker October 12, 2012 at 9:39 pm #

      Jed,

      I never tried the SCD diet but in my experience diet just had no effect on my symptoms. In fairness though I didn’t discover the concept till recently while investigating similar stories for the surgery. I would have definitely tried it had I learned about it sooner.

  4. Surgery Steve
    Steve October 12, 2012 at 9:57 am #

    Hey Baker! Just read your story which seems to parallel mine. I just had my 1st of the 3-step surgeries towards the jpouch. My 1st one was done laproscopically and completed on Sept. 10. I have started a video diary of my journey on You Tube under “ucandpsc”. I made videos prior, during, leading up to and directly after surgery as well as post-op follow-ups along the way. So far, I’ve had a GREAT experience and have not regreted my decision. The ostomy hasn’t really been a HUGE adjustment for me and it is REALLY nice to have the colitis and medications gone! I applaud your decision as I KNOW it’s not an easy one to arrive at and I think, in the end (after a somewhat long road), we’ll both be in a much better place! Feel free to email me if you have any questions at ucandpsc@gmail.com and good luck as you start what will hopefully be your FINAL journey with this disease!

  5. Adam
    Adam October 12, 2012 at 12:29 pm #

    I’ve never had an epidural Baker, but I know many who swear by it (a friend’s wife felt it was an early Christmas present for sure:)

    Best of luck to you, and holy CRAPPER! that Kiss Running pic, I think has just taken over the top spot for coolest all time picture on the entire website! Way cool amigo,

    -Adam

  6. Baker
    Baker October 12, 2012 at 9:33 pm #

    Hey it’s me just checking in from my hospital bed , surgery went great, The epidural really helped with the pain but the meds they used in it caused my blood pressure to go down and doc wanted to make sure I was fpgetting plenty of profusion so we nixed it. I’m on the pain pump now solely but even that is working really well. Surgery was 11 am Thursday, was hoping to get cleared to walk today (Friday) but doc kept me on bed rest till tomorrow.

    Anyway, many more details to come and fingers cross things continue to progress really well.

  7. shelly in maine October 13, 2012 at 3:27 am #

    Wow Baker…amazing…Congrats and continued healing and well wishes. Thanks so much for sharing your journey.
    Best, Shelly :-)

  8. Baker
    Baker October 14, 2012 at 3:47 pm #

    Baker again with an update. I’ll post another much more detailed post later with all the specifics. It’s late on day 3 post surgery (Sunday night) and I’m up and walking often. My bowels seem to be waking up as I’ve had some gas pass into the temp ostomy pouch. They removed my NG tube (down my nose into my stomach) this morning which was a great relief. Had some Potassium “burn” in my IV this morning which was interesting because I had read about someone else having it so I warned the nurse, sure enough it burned and I was a little irritated. Getting some better rest now too as they’ve cut my steroid meds in half today. The open incision is pretty ugly (I’ve got pics), about 10″ long from just above the pubic bone to about 2″ above my belly button and all stapled up, still very sore too.

    • Karl October 14, 2012 at 7:19 pm #

      Hello Baker,
      Good news that the NG tube is out. (I always hated the way it was taped to my nose.) Each day now will see progress. I once had staples, it was fun watching them being taken out.

    • Chris October 16, 2012 at 9:05 pm #

      I’m glad to hear all is going well. Thanks for your pre- and now post-operation writings. My surgery is scheduled for Monday, and your posts are helping get there. Much appreciated.

  9. Mrs Huds October 14, 2012 at 7:37 pm #

    Baker,
    Your story sounds like my hubby’s story. We had all of those questions and more. It’s good to know you’re up and walking. I’m glad you had time to research and prepare. I’m so happy to read these sort of stories. Best of healing to you.

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