Thursday, July 21, 2011

16 weeks post-op #1 / 4 weeks post-op #2…& Scars!

Today is a very special day as it is both my 16-week anniversary of my first surgery, and my 4-week anniversary of my second surgery. You may be thinking, so what? Well, I'll tell you what. It's a big deal. Since both of my surgeries took place at 7:30am on a Thursday, I am going to celebrate every Thursday at 7:30am. Celebrate the fact that I'm alive. Hell, why not do that everyday?

Today is also a big deal because my hole is finally closed. This is the real deal folks. I even have pictures of it to show you. I promise they are not grotesque, although my perception of the grotesque has become slightly askew in the last few months. Bottom line: if you can't stand the heat, get out of the kitchen. This is a UC blog and, quite frankly, UC is not a pretty disease.

At 4 weeks post-op I am feeling remarkably well. The recovery from this last surgery has been a bit tougher than I expected. Yet, as should be duly noted, it's a breeze compared to the first. Maybe it was the abscess. Maybe it was the hole. Or perhaps it was just my high expectations. I'm sure those of you that have gone through these surgeries would understand where I am coming from when I say that I had a tendency to view that 7:30am surgery time on June 23 as the end of the line; my long-awaited moment to kiss UC goodbye forever. I kind of forgot there was another recovery. Well, I feel like I've finally reached that light at the end of the tunnel. But, let's cross our fingers. I have bad luck.

The two pictures below are of what my abdomen looks like today. The sump scar on the left side of my belly is healing nicely, although it is still a bit purple. The sump was a drain that was placed into my abdomen to drain the fluids from my abdominal cavity during the first surgery and was left in until 3 days post-op. The top half of my central incision is healing unbelievably well (my scar continues pretty much all the way down my torso). It is almost completely white and, even up close, the staple scars are barely perceptible. The scar on the right side of my abdomen is where the hole was (and where my ileostomy used to be). They did what is called a "key-hole" whereby they stapled just the bottom of the hole and then left the rest open to heal and close on its own. It is amazing how much smaller the scar is than the hole was. I would guesstimate that the hole was around 2-3 times the width right after surgery than it is now. Note: The sump scar and central incision are from surgery #1, the key-hole scar is from surgery #2.



And for anyone who may be interested, this is a very well-written and engaging article about life with UC from the New York Times: Loren Berlin Article

16 comments:

  1. Congrats! I'm almost 4 weeks post-op from Surgery #1 and still struggling with stoma skin irritation and back pain. Surgery #2 tentatively scheduled for the end of August! Your warning that the second surgery is not the end is well-taken, because that's precisely how I was thinking of it in my head...

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  2. Ugh, I know how bad that back pain and skin irritation can be. It's awful. Just keep thinking that in one month, at least one of those things will be gone forever! …oh, and have you tried using stoma powder yet? Also, I ended up getting a yeast infection under the ostomy because of the heat. I was told to use Tinactin (in powder form!) on it twice/day. It helped, but it's hard to get the ostomy appliance to stick on top of the powder. Best of luck!

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  3. sad face for the scars... happy face for the healthy Katie

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  4. Thanks, Katie! I'm cautiously optimistic that we're (finally) getting in front of the stoma skin irritation. We'll see how tonight's bag change goes. Did you have back pain after your first surgery? What did you do to get rid of it? I've tried everything, but it stubbornly refuses to get any better.

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  5. So sorry it too so long to get back to you in this, Ben! I did have very bad back pain from the first surgery. In fact, I kept joking that the back pain was the worst part of it all. I must say there is little I was able to do to get rid of it, but once you are more active and moving around it should get better. Mine was almost entirely gone by the time I was about 5 weeks post-op. If it's super severe, I would make sure you go see a doctors. I know sometimes they are concerned about kidney issues when you have lower back pain, especially post-op (not to scare you! I am SURE you will be fine!)

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  6. Thanks, Katie. Did you have any back pain associated with your abscess? My recent intensification of back pain has been accompanied by increased mucus output from my J-Pouch and fever, and I'm semi-concerned I may have sprung a leak and am accumulating fluid somewhere.

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  7. Oh, no! I am so sorry to hear that! I did not have back pain from the abscess, but I would definitely call your surgeon ASAP about the fever and increased mucus output, or even stop by the ER. It sounds like you definitely could have an abscess. Aside from not having back pain, my abscess symptoms were very similar! (and were accompanied by severe pain under the old ileostomy site where the abscess was)…it could be that you have an abscess in a different location (hence the pain the back instead of stomach). I know you will be feeling much better soon and I know it's hard and it sucks…but make sure you take care of yourself and get some medical attention!

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  8. Thanks again. I'm off for a CT and blood tests this afternoon!

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  9. Unfortunately, they discovered a small leak in my J-Pouch, which they think is the source of my fever/pain (and will also delay my takedown). Fortunately, I didn't have any abscess. Was your abscess related to a leak in your pouch? If so, how did they go about fixing the leak? Thanks!

    Also, you can use the contact form at my blog to email me, if you want to move this conversation out of your comments section! http://knowguts.wordpress.com/contact-me/

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  10. Katie,

    Thanks for your blog. My son had surgery 2 weeks ago to undergo a colonectomy for his UC with a planned ileostomy and J-pouch creation.

    Unfortunately, due to limitations of his vascular system, they were not able to create a j-pouch that would link to his rectum, so he will have a permanent ileostomy for the immediate future.

    Unfortunately he developed one obstruction and one abscess so far, so instead of being out of the hospital in a week, he is still there....recovering with two abdominal drains, a PICC and of course his stoma.

    He remains positive due to his strong faith and optimistic nature.

    Your blog helped me to be more patient and hopeful.

    Thanks.

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  11. Hi Ken,

    Thank you for the post. I am always happy to hear that my blog helps other UC and Crohn's patients. These are rough surgeries and, in my experience, almost always come with complications. You and your son are right to be optimistic, though, as that is key to making a full recovery.

    It's a long and bumpy road, but I know that your son will get better and, ileostomy or not, he will live a very fulfilling life. The ileostomy is very difficult to adjust to, but it is, literally, life saving and will allow him to pursue anything he wants.

    All the best and keep in touch,

    Katie

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  12. Hi. I am 5 weeks post op from my second of three surgeries, with the third being my takedown surgery. I have had the worst recovery with this last surgery, where my Dr gave me a loop ileostomy and jpouch.

    I am still very weak, tired, and I am experiencing body/bone pains. My lower back hurts so much and my legs as well. Not to mention the insomnia and what I think is anxiety spells. I'm still taking pain medications and would like to get some advice from anyone who has gone through a similar situation and if there is a light at the end of this dark tunnel I've been traveling. I'm ready for a normal active life with my 21 month old, my 5 year old and husband.

    Diagnosed with unresponsive severe ulcerative Colitis 2011
    Took 13 pills a day and other medications for a year
    Lost pregnancy at 5 weeks due to UC
    APRIL 2012 TOTAL COLECTOMY WITH ILEOSTOMY
    AUGUST 2012 JPOUCH AND LOOP ILEOSTOMY
    TAKEDOWN ........... SOON

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  13. Heidi,

    I am so sorry to hear that you are having such a tough recovery. These surgeries certainly aren't easy and I know it took me months after each one to feel like myself again. It must be really tough with two kids at home, I can't even imagine. I am SURE you are experiencing anxiety. I had some major anxiety the whole year last year, in fact, I wouldn't go anywhere without having my Xanax prescription on me. Major surgeries like these can leave you with a very uneasy feeling, especially if you are experiencing complications. I have had a lot of J-Pouchers tell me they had awful back pain, I did too, and it is totally normal. Your abdominal muscles are so weak right now that your back is doing a lot of compensating. Has your doctor recommended any anti-anxiety meds? They can really help, you just have to be careful with them. I personally don't have a problem with taking them only when I am ill and having major anxiety problems. I also found that the painkillers, after taking them for a while, CAUSED me anxiety. I would always try to get off of them and onto Tylenol as soon as I could, but everyone is different.

    One thing I can promise you is there IS light at the end of the tunnel!!! I have yet to talk to a J-Poucher that regrets having these surgeries. I know I personally was in such a dark place when I was going through the surgeries and it's hard to imagine being healthy again, but I had some other J-Pouchers promising me that I'd be sitting on the beach in the sunshine in no pain in not too long, and they were right! I know it's tough, but just try to hold on to hope and keep talking to me and other J-Pouchers. It makes a huge difference mentally. One other word of advice I would give is to try to walk as much as you can, even if it's only 50 yards, walking sped up each of my recoveries.

    And best piece of advice I can give is to watch this video made by my friend and fellow J-Poucher, Iris Campo. I watched it 20 times/day when I was in the hospital and it gave me so much hope (her whole YouTube channel is fantastic so you should check it out too): http://www.youtube.com/watch?v=duOOaOnPKzI

    All the best to you and your family and wishing you a speedy recovery. Please don't hesitate to reach out to me with any questions!

    Katie

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    1. You are exactly what I need right now. Anything positive makes me feel so much better. I am taking a tylenol 3, which is I guess coated with COD. I was also given lorazapan, not sure if its spelled right, for anxiety. I really try not to take it unless I feel like I'm about to have a break down. I just don't want to become dependant on it.

      I know I need to walk and course eat, eat and eat to gain more energy, but when I stand for a long period of time my bottom, inside, hurts! The food, Well I just don't have a hunger pain yet, so I make myself eat small amounts throughout the day.

      I'm happy to hear that the pains will eventually subside. I've lost 22 pounds with this second surgery, I'm weighing 117 right now and of course I feel so weak due to the rapid weight loss. Thank you for talking to me, it has mentally and physically taken a toll on me and I'm ready to be normal again. I had one question, when I have my takedown surgery, will it hurt in my bottom again or more? Im hoping since I have the jpouch already and its just there healing that it won't hurt to start using it. Again, thank you so much.

      Heidi

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  14. Heidi,

    SO glad I could help. :) You will get your appetite back, but for now small meals are a good thing anyway. I had several paralytic ileus (gas blockages) in my small intestine after surgery which I needed a nasogastric tube and hospitalization for so I was not only not hungry, I was petrified of food for a very long time. I had a complete small bowel blockage five months after my takedown, which required another major surgery and two-week long hospitalization. That was not caused by food, but by scar tissue wrapping around and cutting off my intestine. Now, I do NOT mean for any of this to scare you, but my point is that I had a total weight loss of around 20 pounds as well and was very underweight for a long time. It took me a while to build up both an appetite and a confidence to eat food again, but now that I am almost a year out from my last surgery, I can say that I have no hesitations and I have gained all of the weight back. I eat more food and more of a variety of foods now than I have in ten years since I was diagnosed with UC and I feel FANTASTIC!

    To answer your question about the pain with your pouch, it will not be ANYTHING like having UC. When you first come out of surgery you may experience more of what I describe as soreness because you haven't used your pouch yet, but the fact that your pouch has been resting and healing for a few months is a very good thing and it will help tremendously. It took me a few weeks to get used to how the pouch worked because it is a different sensation and is not like having a colon. It just takes some getting used to. But, pain, no, you should not experience pain. You will go to the bathroom a lot at first and your pouch will slowly stretch with time and adapt and within a month or two, you should be able to cut down your bathroom trips to around half of what you will be experiencing straight out of surgery. Though excited to get rid of the ileostomy, I was scared to use the pouch too, but all I can say is that it was easier and better than I expected. Try to not get discouraged when you get right out of surgery, though, because it can be a little discouraging as you are not adjusted to the pouch yet, but I promise that in no time you will be back on your feet and feeling good, and not too much longer after that you are going to be feeling better than you've felt in years!

    I know it's tough, but you will get better and you will be able to lead a total high-functioning, normal life again. These surgeries are a long road and it's tough to keep your spirits up, but TRUST ME, it will all be worth it!!

    Katie

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    1. Katie,

      You hit it on the spot, im just plain scared to eat. I do, though.

      My immune system is compromised, so I now have an infection in the tissue of my sacrum, which came out in the skin. Talk about added pain and discomfort!

      I admire you for helping others who are going through UC, its not the same talking about and explaining it to others who haven't experienced it. I will definitely keep posting as I get closer to my takedown.

      Heidi

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