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Shouldn’t I Feel Happy After Surgery?

Introduction to Kevin:

35 yr old Male, diagnosed with Ulcerative Colitis in January 2012. Under control with presdisone and asacol until October 2012. Was in 6 month flare that got progressively worse in April. Had surgery to remove colon May 3rd.

Some more about me:

Married father of four, love outdoor sports

Symptoms:

My pre-surgery symptoms were pretty standard, multiple loose BMs x day with bleeding, abdominal pain, joint pain (prob due to being on prednisone for 6 months).

BMs were worst at night and morning. Can’t seem to make it through the night without a few (like clockwork at 2 and 4 a.m.). Usually 3-5 events before I leave in the morning.

Shouldn’t I Feel Happy After Surgery?

So my last story (April 17, 2013 – “New to this Disease…Tired of it Already“) was about my inability to gain control of my UC and my frustration even though it had only been a year since diagnosis and I know so many of you have lived with it so much longer. My frustration led to my decision to have surgery to remove my colon on May 3rd. It has now been a week and I have a number or questions, thoughts, etc. that I am looking for some input on from the group. It is probably easiest to put them in list form. Feel free to answer any or all:

1. Did others who had the surgery second guess themselves afterward and think maybe they made the decision to0 quickly (again I only had the disease for a year)? I tried 6MP, Remicade, and all the other drugs. Should I have tried fecal transplant first?

2. Is depression normal after surgery? I can’t put a finger on the feeling other than to say it is a “funk” that I can’t shake. It is by no means to the level of wanting to do harm or anything like that, but sometimes i want to just sit and cry for no reason. If others have experienced, how long does it last? Does it go away and then come back after the second surgery?

3. What did people do to keep themselves occupied while they were off work recovering from surgery? I think part of my depression is that I am so used to being busy during the day that now I can’t find enough to keep myself occupied and my mind just wanders.

4. One week out from the surgery I have had different physical effects such as chills, cold sweats, etc. Did anyone else have similar or other symptoms that were not described prior to leaving the hospital? I think part of it is that I may have tapered my prednisone too quick. What has been your experience with the prednisone taper? I have read than going from 40mg to 20mg can be done about 5 mg per week but from 20mg to 0 takes much longer, perhaps 2.5mg per week. I am at 20mg right now.

5. Speaking of the hospital, was anyone else not provided sufficient information prior to leaving the hospital. For instance, I had no idea I would still be passing anything through my rectum, I thought that was closed off for all intents and purposes. However, almost everytime I urinate, I pass something. I was able to go online and find out that it is normal but it would have been nice of them to tell me.

6. How long did most people spend around the house before they felt confident going out in public for extneded periods of time? I am not talking about confidence with the appliance. I have no issues with the bag, I can dump that thing with the best of them, anywhere, anytime. I am more talking about feeling strong enough to go to the mall, hang out at others’ houses, etc. I feel like maybe I am pushing myself by trying to do too much too soon but I hate sitting around the house (see prior point).

7. I am having a 2 stage surgery, how long was the time between the first and second surgery for most people? I have a follow up appointment soon and would like to know what to expect.

I alslo have a lot of questions about the second surgery but right now I am just trying to make it that long. It seems like I have more questions that answers and that is not how I prefer to operate. Any insight you can provide into your experiences would be greatly appreciated.

Previous Medications:

I tried them all and opted for surgery. Hopefully it was the right decision.

written by Kevin

submitted in the colitis venting area




surgery

11 Responses to Shouldn’t I Feel Happy After Surgery?

  1. Heather May 19, 2013 at 7:20 pm #

    Hi Kevin,

    I had the first step of jpouch surgery January 25, 2013. It took 4 weeks before I felt like leaving the house for anything. I read someone else’s post that said at 6 weeks you feel like yourself again and that was true for me. I am 3 1/2 weeks out from takedown surgery. There was 13 weeks between my procedures. I have has no complications and am doing great. I was feeling fairly normal 2 weeks after takedown. Every day the pouch is functioning better and I feel great. I wouldn’t be surprised if some of your feelings are tied to prednisone. That stuff always made me moody. Talk to your surgeon’s office and ask lots of questions. They should’ve warned you about the action down below. Take care and know you made a great, courageous decision! The only thing I regret is not doing it sooner.

    • Adam
      Adam May 19, 2013 at 7:42 pm #

      Kevin,

      Can’t agree with Heather more. Prednisone is known for so many unintended side effects the book on it would be thousands of pages. But more importantly, keep your eye on the prize, you’re in the middle of a big transition, and you’re soon to be out the other side of tunnel.
      Heather, way cool of you to chime in here, and soon enough Kevin’s going to be doing the same with another UC’er in the same situation post surgery.

      -Adam

      –also, your pred taper question is the billion dollar question. Ten doctors will give you ten different answers on what’s best in terms of a taper schedule. For me, a slow taper in the 30mg and below range has worked best, and nearly everyone i’ve talked to about this feels the same. But make sure your doctor knows what you’re doing, they are often good at taking into account any other factors that could play a part in getting off the little white pills.

  2. Wendy
    Wendy May 19, 2013 at 7:29 pm #

    Hi Kevin. I haven’t had surgery, but I’ve read about some people on here who have. All the people I’ve read about seem quite happy with having their surgery, but I think a lot of them were in a situation where they would die if they didn’t do it right away. The ones I read about anyway. I’m pretty hesitant to get the operation, but I am also in a situation where I have a choice. I’m going to try everything natural I can, but I am not interested in drugs at all.

    I think you just lost a major organ and being kind of upset about it isn’t unusual at all. The thing is, at least you don’t have to worry about colon cancer ever and you also don’t have to worry about going to the washroom all the time and losing blood. At least you know what to expect to a certain degree. Your quality of life is probably much better than mine is at the moment (I can’t leave the house for fear of crapping myself). It gets frustrating and depressing doing that as well.

    I hope you are feeling better about it soon. It may be something I choose one day. All the best.

  3. Mike May 19, 2013 at 8:16 pm #

    Kevin,

    You said something that is important. You tried all the drugs. This is something to keep in mind as you move forward. Some folks modify their diet slightly and are in remission for years. For others a daily dose of Lialda (or equivalent) is needed. Others find remission through Humira or Remicade. Then there are folks like you and me. We try all the drugs and see no progress. I keep this in mind as I read about new things on the horizon. For example, there was just a post on Simponi being approved for UC. Why should you or I believe that yet another anti-TNF was going to do the trick for us? we made the decision, and we’ll only drive ourselves crazy looking back and second guessing. I’m not saying I never do, I just try to remind myself there isn’t anything positive to be had going down that road.

    You also asked a question about being confident going out in public. It sounds like you’re comfortable with your appliance. This is great!I wasn’t confident at all for years leaving the house due to UC. Now I can leave the house and the only thing to limit us is our energy, which will build with each passing day. I constantly think of this to keep me positive when I’m bumbed about the “new me”.

    Here’s wishing you luck and that your recovery continues in a positive direction. Keep positive and just take it a day at a time.

    Regards,
    Mike

    • bev May 20, 2013 at 4:04 pm #

      Great post Mike!

      ALL of the meds used to treat UC are horrible, and they ALL seem to stop working.

      Always remember that. You need not worry about meds ever again. How terrific is just that one fact?

      You can and will move forward, Kevin. You probably already have more than you think. Give yourself time…don’t pressure yourself. Everything comes in time.

      Bev
      :)

  4. Jen From UK
    Jen May 19, 2013 at 11:48 pm #

    Wanted to wish you all the best, it’s a huge transition! I’ve not had colon surgery but do know a- pred tapering made me exactly like that! B- the anaesthetic drugs made me weepy and emotional for a week or two. My mum had the anaesthetic effects too. Wishing you a complete and speedy recovery to health :-)

  5. Lorraine May 20, 2013 at 12:30 pm #

    Hi Kevin

    I was blown away when I read your story, my story and even diagnosis date are so similar to yours.
    I am 55, never sick till I was diagnosed with UC in Jan 2012 (from taking antibiotic) anyways….
    I was sick for one year, home in bed, hospitalized 3x till I had the colon removed Jan 2013. During the year I tried 3 meds. and ended with Remicade, nothing worked. I cant express to you how happy I was to have the surgery,( at times I feel like a looser because I read all the positive stories of how people continually try different things, diet etc. and then go into remission, god do I give them credit for being so strong. ) I never had that opportunity, I KNOW I was too sick and remission was not an option for me. At times I had some “why me” thoughts, because like you, I was very active and this disease is devastating to the mind and body. At the exact same time I was diagnosed a good friend of mine was diagnosed with cancer, she is now gone.
    Very dramatic I know, but thinking about her situation and mine really helps me to see there is light at the end of my tunnel and yours, so try and keep that in mind when you get blue. I do not regret having surgery.
    You are supposed to rest for 6 weeks post op, this you must do so your body can heal properly.
    Its hard to be still, I know, but get some good books, golf channel!, and computer helped me get through the first hurdle. I am 4 month post op. and have been off prednisone for 2 months now.
    I am still having chills and cold sweats, an itchy rash will pop up now and then. My biggest complaint is the harsh pain I am having in my muscles and joints. My doctor says its from the prednisone and “it should pass” only time will tell. I am currently taking Vitamin C, D, Iron and Calcium. Make sure your iron levels are good, mine were extremely low, after taking iron for 3 weeks, things perked up and I felt better.
    But, thats about it, things with appliance are working well.
    Like you, I was not told about the rectum mucus and I frantically called back to the hospital to ask.
    I have been passing bloody mucus for 4 months, (not a lot)
    for the past month it has been twice daily, initially it was 5-6 times a day. Last month my GI gave me a Sigmoid exam, according to him I should still not be passing blood, he is right, the remaining colon has not healed and the j pouch surgery cannot be performed until the colon has healed. I am happy to say that I have not passed anything for 3 days, so here’s hoping the remaining colon has calmed down.
    I started to go out after my six weeks were up. But, the day after I stopped the prednisone the pain started and it has made it very difficult to get out. Because I’m a woman, the vanity issues kicked in and I hated to go out, my hair has not grown in a year, and it looks like straw. The prednisone moon face certainly didn’t help either, and lack of sun made me look dead. But, you know what, I went anyways, its not like Victoria’s secret was banging at the door! I’m alive and feeling better every day.
    I was told by my surgeon that the second surgery can take place 3 months after the first.
    I was booked for 5 months, but was cancelled as the surgeon lost the OR that day. I do not have another date as of yet. I’m okay with that.
    All I can say is, when I think back a year and what I was going through, I truly wished to die. But like everything time heals all. (and a little medication doesn’t hurt).
    Kevin, you will be well again. You are young, you have a fantastic job and a wife and little ones who can’t wait to have you back. Wishing you good health.
    Lorraine

  6. Jessika May 20, 2013 at 1:19 pm #

    Hi! I wanted to let you know that you are not alone with regards to everything that you’re going through!

    I was suddenly diagnosed with UC and polyposis ( a genetic disorder- numerous cancerous polys in colon) in 2011 at 23 years old. My colon was removed 4 months after finding out. I was able to do my surgery in one step and ended up with a j pouch.

    First, yes I did question myself even though in my situation I had to remove it because of cancer already being formed in my colon. However, I was on prednisone and remicade before surgery to get my UC in remission so that I would have a more of a chance at a successful operation. I thought after surgery that maybe I should’ve waited a little longer and prepared myself more. But, again, I couldn’t really do that since I had polyps that the doctor was sure was about to become cancerous in a short period of time. I can say that I have had my doubts about whether I should’ve gotten my j pouch… as much as it is wonderful to go to the bathroom like I always have, it does come with a price. I always worry about whether I’m near a bathroom, etc.

    Secondly, feeling that “funk” after surgery is totally normal! I spent a few weeks after being home from the hospital miserable. I felt like my life was over and that I would never get to do anything like a normal person again. Part of that, I think, is because we found out and then had surgery so quickly. It is a lot to adjust to. I would feel like crying all of the time and just generally wondered what I did to deserve this. It will get better! I can only promise you that. I watched a lot of TV and tried to keep my mind on other stuff. That part is hard. I watched WAY TOO much reality TV during that time!

    I was already tapered off of my drugs when I had my surgery, but I still did have chills and sweats. I was on a lot of pain meds, so that may be part of the problem. Also, your body has just went through a major ordeal. Maybe that’s why. Definitely mention it to your doctor to make sure that everything is okay.

    I also wasn’t provided any info on how to deal with the aftermath. The hospital prepared me just in case I needed a ostomy bag for a while, but that was basic info and since I didn’t end up needing a two step surgery that was the end of it. I wish I could help you with that.

    I think I stayed indoors for the first two weeks after getting home from the hospital. I was so miserable that I didn’t feel like going anywhere and when I did I always felt like I had to go to the bathroom. It got better after my doctor let me start taking Imodium to help with my constant feeling of needing to go. Once you have your second part see if your doctor thinks that is right for you as it helped me tremendously until my body adapted to not having a colon.

    I just want you to know that you will be okay and there are many of us out there that have gotten through it. It took me a good three months after getting my pouch to start feeling back to me again. On the plus side, you’ll always know where all the good bathrooms are in town. :)

    Much luck and love in your journey.

    Jessika

    Oh, I also wanted to share that I had my surgery done at the University of North Carolina at Chapel Hill. The GI staff there is supposed to be some of the leading people in this field. Just in case anyone needs a second opinion.

    • Lana M May 29, 2013 at 3:28 pm #

      I have had UC since 2010 and it is now at an uncontrollable point. I am considering surgery as recommended by my GI but I want to make sure he’s not just pushing it off on me along with all the medicines that are required. I trust this doctor but my family doesn’t. Are there any other alternative treatments to the surgery?

  7. Blake May 22, 2013 at 9:28 pm #

    Hey Kevin,
    First off, congrats on the first step cause it’s a biggie! I don’t think anybody feels really great a week after colon removal so don’t worry. I know I was a little depressed about it. After all, your intestine is sticking out of your belly, that takes some time to get used to. I was relieved thought that I didn’t have to use the bathroom a bazillion times a day. Like yourself, I did have to use the toilet once or twice a day after surgery which I thought was odd, but it’s pretty normal. Since I took a month off of work, it messed with my regular routine. I went to bed really late at night, felt like a zombie all the time. Then I felt bad because I couldn’t play with my son a whole lot, help around the house, just felt like an overall lazy bastard. About 2 weeks after surgery, I started feeling better. I made it a point to get my ass off the couch, I would go on walks, go grocery shopping, even started going back to the gym. This definitely helped the depression. The more busy I could keep myself, the better I felt. When I went back to work, I almost forgot I was wearing my crap bag.

    I had some weird side effects after surgery too. I did get the night sweats. I thought I pissed myself one night because my whole backside was wet. I realized that it was sweat. This happened for about the first month and then didn’t happen again. I’m thinking it had something to do with the prednisone too. I waited 6 months between my 1st and 2nd surgery. I did the J Pouch in 3 steps rather than 2 so our situation is a little different. My doctor told me 3 months is the minimum healing time between surgeries. I chose 6 months because I wanted to be well healed, plus I wanted more time to gain all the weight back that I lost and I did.

    I’ve had the J Pouch since August of 2012 now. It’s been great! It didn’t start off great, the first couple weeks really sucked due to gas pains, but that passed. I typically go about 5 times per day, once at night. I still get some night time leakage here and there. My stomach makes really loud noises sometimes at work because I can’t fart unless I lay down, so the gas gets trapped in there until I go blow it out in the bathroom. Some people can fart with their J Pouches, but I don’t seem to be one of them. Other than that, I really don’t have anything to complain about. I’m back in the weight room doing all the stuff I did before I ever had UC. I play men’s league softball, wrestle around with the little one and am back to living the good life. I have gave up alcohol and gluten because both make me throw up (I have Celiac disease as well). Hope you get over the slight depression, I’m sure you won’t even remember it in another few months. Good luck!

  8. Faith June 2, 2013 at 9:08 pm #

    Hello I feel like you made the right choice only because my experience with this disease was faster. I only had it for 5 months and was developing toxic megacolon sooo my colon had to come out fast. I’m still going through the 3 stage process. I felt good enough to go out 2 months later and like myself 3 months later. I think you’ll adapt faster! I wish you well. And I also have had trouble keeping myself busy. I need to feel like I have a purpose rather than just feeling like a sick person…I am going to try volunteering and getting outside more. Good luck!

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