Ulcerative Colitis Tips


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People Who Have Had Their Colons Out – PLEASE ASSIST

Introduction:

Hey people who’ve elected to get their colon’s removed, I would like some input. I’m possibly facing making a decision here soon on whether or not to remove my colon. Need some brave people who’ve had experience with this, so please read and feel free to let me know the good and bad. I’m not 100% sure yet, but things are getting to the point where this may need to be done so I can live a normal life… well, normal life without a colon.

Where I’m At with My Colitis:

Hey everyone,
Blake here, I’ve written a few stories on this website so far, but I’ll give you an abbreviated story of what I’ve been going through. I’m 30 years old, father of a 2 year old boy, husband and trying to work full time job. I played baseball and soccer all 4 years of high school and college, always enjoyed weight lifting since graduating college and got descently strong and big naturally, until this nasty disease is taking everything away.

Okay, diagnosed with Ulcerative Colitis in February this year (2011). I was seeing blood in my poop, was hoping I had a hemorrhoid or something, but it was nasty old UC. I should mention I also told my doctor to test me for Celiacs cause it runs in the family and was tested positive as a Celiac. I was so happy cause I thought all I had to do was cut out gluten and this problem would fade away. My first flare lasted a couple months and was hellish. I was pooping blood all the time, had diarrhea mixed with blood all the time, but the flare went away with Prednisone and Asacol. A couple months later, started seeing blood in my stools again, red lights went off. I knew this was happening again, but I didn’t know how because I had been eating gluten free for months now, no cheating. I called the doctor, we did a colonoscopy/endoscopy June 22nd and revealed UC of course along with some other medical terms I don’t remember. He did say that my small intestine looked good and could t ell I was eating gluten free. It was very early in the flare, so at this point I was just seeing blood in my stool. In July and August the frequency and urgency picked up along with diarrhea. I decided to keep a food/poop journal after I started the SCD diet on 9/25/11 through 11/10/11-(this is the date I gave up on SCD because I hadn’t had any relief and I could make absolutely no correlation between my diet and my craps). I ate Jimmy Johns the day I gave up SCD, no bread, just their sandwich in a lettuce wrap, bbq chips and cool refreshing Coca Cola. Bad idea! I crapped so many times at work that day and it all floated at the top of the water (it may had gluten in it). Anyway, my journal shows a range of 10-25 craps per day, I would say average of that little over a month period was about 15 a day. I know I’ve had a couple days that I didn’t keep track where I had to break 30.

My wife and I weren’t satisfied with my GI, so we switched to a highly recommended doctor who only deals with IBD patients. My first visit was 5 hours long with her. She scoped my a-hole and took biopsies which hurt like a motha trucka. I could feel her ripping my colon apart and I could see it on camera which made it worse. The day before I saw her I only crapped 4 times, was the best day I had in months and seriously thought I was getting better. The day after I saw her, I crapped blood all day and night, I didn’t keep count but it was a lot. The biopsies really messed me up. After looking at my colon, she wanted to put me in the hospital to get a Remicade treatment started right away, so I did. I got my first infusion and a 24 hour stay at the hospital. I was expecting Remicade to be my miracle, but then I almost shit my pants on the drive home from the hospital and reality sunk in. What if this doesn’t work? Am I at the last resort? I can’t live like this any longer, I have to work, and I can’t miss 6 months out of a year because of my UC or else there goes the house, the cars, everything my wife and I have worked for. Okay, so maybe I’m over reacting a bit because my wife makes more than me, but we both need to work. I need to give Remicade another chance or two to see if it’s really going to work.

Then my doctor’s assistant nurse calls me today and wants me to go to the hospital today (2 days before Thanksgiving) to get my colon removed.

I said WTF, where did this come from?

I found out that my wife had been calling the doctor behind my back telling them how bad I’ve been, which I can’t blame her because all of her conversations with me the last week or so have been with me wrenched in pain on the toilet. I think I have been pooping out tiny bits of colon. Things are not getting better and haven’t been for about 5 and a half months now. I tell the nurse hold up, we need to give Remicade another chance atleast. My doctor told me that it sometimes takes 2, 3 infusions for it to work. Why all the sudden is she wanting to take my colon from me. The nurse tells me that the doctor now has realized that the Remicade probably won’t work for me because I have not had any positive results since the first infusion and she doesn’t want my colo n to get any worse so we should take it out now. I told her I’m not gonna rush into a decision like this without some time, without another infusion and without consutling my family about it and without enjoying some food at Thanksgiving.

So that’s where I’m at today. I’ve been trying to wrap my head around life without a colon for some time now because I figured it would get to this point. Maybe I’m jumping the gun and the Remicade will start working soon, but maybe it won’t. I need to start thinking about my options.

That’s where I need some people

who’ve had their colons removed

to chime in cause I got a million questions.

I’ve been doing a lot of research on the web today about J pouch procedure because that’s probably the one I would want to do, although I’m weary about this. It seems that a lot of people find themselves going to the bathroom a million times a day still and that their asses leak when they sleep. I’m trying to avoid that, so why would I want that option. The other option is living with a colostomy bag the rest of my life. Doesn’t sound so bad, but it doesn’t sound very good either. I’m just gonna start writing questions so here goes:

1) If you’ve had a J Pouch, I’ve heard the first year or two can be almost as bad as when you had UC. Is that true? I hear the pouch needs time to stretch out and get used to it’s new function. Is it easier to hold your craps in, because I can’t with UC and I have many ruined undies to prove it.

2) Is there anyone that wishes they did not get a J Pouch and would’ve just got the colostomy bag? If so, why?

3) How much recovery time do you need to get back to work? I work in an office environment, no heavy lifting at work or anything, would I be able to go back after a couple weeks?

4) I like to lift weights and would be devastated if I could not work out again. I know I would need to recover before hitting the gym again, but is it possible to get back to where you once were before the whole UC mess? Can you lift weights with a colostomy bag or do you have to worry about your stoma popping loose or anything?

5) I think it would be pretty cool to never have to sit on a toilet for the rest of my life (meaning just getting the colostomy bag), but is that a dumb decision just because I’m scared of the J Pouch not working for me? Also, does losing the function to defecate and fart have any kind of psychological effects on a person? It’s weird to think I may never use my sphincter again.

6) When a person with a colostomy bag passes gas, does the bag inflate like a whoopie cushion and is there some type of valve or something to get that gas out or do you have to change that bag?

7) How irritating is wearing a bag day in and day out? I’m thinking you must get used to it. I mainly sleep on my stomach, is that possible with a bag?

8) I’ve heard that getting your colon removed is the only sure way to beat ulcerative colitis, but my doctor’s assistant said that wasn’t true. She said I would probably need to still take Remicade even if I had my colon removed. I said, “but if Remicade doesn’t even work for me and it’s the reason I’m getting this mother taken out, why the hell would I need to continue taking that expensive ass drug.” Her answer was something to the fact that it would have a lot better chance of working once the colon is removed. Sounds like BS to me. Any thoughts?

I’m sorry that these questions sound pretty silly, but these are the things I’m wondering at this point. I may not get responses to all or any of these, but thanks for reading. I’m really hoping that things take a turn for the better here soon, but I need to come to terms with the fact that they probably won’t and get ready for worst case scenario. Thanks all!

Medications:

Prednisone-Been on Prednisone probably 6 months of 2011. Mostly 40mg’s, have done 60mgs also
Asacol-helped get me out of my first flare
Asacol HD-has done nothing for me since I started taking it a couple weeks ago
Lialda-crap
Sulfasizine-found out I’m allergic and it’s crap
Remicade-have had one infusion, next one is scheduled Monday 11/28/11. First infusion didn’t do anything
Hydrocortisone enemas-think these actually help
AMP Floracel-it’s a natural pill made with the healing properties of aloe, felt like it made the blood go away for a while, but hasn’t done much else.
Florastor-Probiotic pills 3X a day
Lomotil and Immodium-they work about the same, slow down digestion, but still unpredictable
Fish Oil
Calcium supplement
B6 supplement
SCD Diet-did this about 40 days in a full flare, didn’t seem to help-still eat relatively SCD, but added white rice, potatoes and some other stuff (cheetoes and Funions cause I had enough) including Coke every once in a while.

Long list, but wanted to include everything (I’m probably forgetting some stuff) that I have take. I’m currently on 50mg’s of Prednisone, Asacol HD and Florastor (probiotic).

 

– Thanks so much everyone, Blake




33 Responses to People Who Have Had Their Colons Out – PLEASE ASSIST

  1. Chad November 27, 2011 at 11:33 pm #

    1) It takes a while to adjust…but it easier to hold in. It takes 12-18 months to work really well. But weeks after the surgery you should be happier than you are now.

    3) Couple of weeks

    4) You can do anything when it heals

    5) I’ve had ileos…they are hell. Constantly squirting out…noisy…leakage issues…nightmare.

    6) There are vents…but they don’t work so well.

    7) In my experience, it was nonstop hell.

    *** Your doctor’s assistant is an idiot…as long as you don’t have Crohn’s AND they remove your entire colon and rectum. It sounds like you are sick enough to be the textbook case for the three part jpouch surgery.

  2. Casey November 27, 2011 at 11:55 pm #

    (I am answering on behalf of my son-12 yrs old. he had his take down in july 2011)

    1. He does go quite frequently still. Amount of bathroom trips can vary, 4-9 times a day. BUT, no pain, cramping, blood.

    2. There are times that he does wish he still had his bag. Mostly if we’re out and he just doesn’t want to go to an actual bathroom. That feeling fades quickly when he remembers the hell that his ileostomy was.

    3. Recovery depends on the person. My son was released 2 weeks after surgery and in 4 days was riding roller coasters. Second surgery was rougher on him. (he had 2 part surgery)

    4. With the awful luck we had with keeping the bags attached to the skin my son would definitely have trouble with strenuous activity.

    5. You will have an ileostomy because your colon (colostomy) is removed. The stool that passes with an ileostomy is much more loose and acidic. Since surgery my son has not felt brave enough to fart. lol It’s the one thing he will not do for fear of pooping himself. The only accident he’s had throughout everything has been once in the hospital after his take down. The very first time he had to poo for real he wasn’t prepared for.

    6. Yes the bag puffs up. You can get a wrap, worn under your shirt, to conceal the bag and the puff but we could never get the vents in the bags to work. The wrap was a blessing.

    7. There was no way my son could sleep on his stomach. He had a lot to contend with, probably more so than the typical patient. He had previous stomach scarring (from a surgery after he was born) that made the surface not as smooth as a normal belly. It was next to impossible to get more than 1 day out of the bag. It was hell.

    All that said, my son would do it all over again to be pain and drug free. I can only hope and pray that the frequency will decrease over time. He still gets up 2-3 times at night..and that is after taking 4 Imodium in the morning and at night..daily.

    • Erica r August 16, 2013 at 7:38 pm #

      This was written in 2011. How has your sons life been since? Health?

  3. Curtis November 28, 2011 at 12:13 am #

    1. I felt significantly better after about 1.5-2 weeks and it got better each day. I feel great 2 months out and I’m happy as can be! Doing everything I did before all this happened to me.
    2. Glad I got the J Pouch but I know I could live with the bag if need be.
    3. Probably a couple of weeks.
    4. When everything is healed you can do it all. With the bag you could probably do some light stuff, but ask your surgeon because you’ll prob only have 6 weeks in between both surgeries. I’d say don’t risk it.
    5. Get the J Pouch because if it doesn’t work then you can always go back to the bag. At least give it a shot and let your body decide.
    6. It does inflate a little…that just means it’s time to empty it. Pretty simple.
    7. I was used to my bag in about a week and after about 3 weeks I didn’t even notice that I had it because it became second nature for me. When it’s all you do and can do you get used to it and don’t realize it anymore, at least that was my experience.

    Here is a link to all of my updates if you want to read them.

    http://www.ihaveuc.com/author/curtis/

  4. Ruth November 28, 2011 at 1:27 am #

    I haven’t gone as far as the Jpouch yet so can only give my experience with the stoma. I had UC for about 2 and a half years till I decided to go for the surgery. Had an ileostomy with the jpouch to follow in later surgeries. Having a Stoma is easy I think, and its taken my uc away so I’m grateful for it in a way. The recovery from surgery was hard, first 2 weeks the hardest! My recovery was about 2-3 months and I had to have help looking after my 2 year old son for a long time. Passing gas through the stoma was rather strange to begin with, it used to make me jump lol but now its quite funny and only sometimes its loud depending on what you’ve eaten. It does inflate the back but not massively unless you don’t empty it for a while. I can honestly say that I can’t even tell/feel I’m wearing the bag most the time, but it does take some getting used to and you may have to try a few different products till you find what suits you best. Sleeping on your stomach is a no no, you would most probably burst your bag. I’m so happy at the moment with my ielostomy that I’m not sure if I’m going to go ahead with the jpouch yet as heard some bad things about it. But maybe sometime in the future. Oh and I seen a comment say to go for the pouch as you can always go back to the bag, this is true but that comes with complications too, your intestine will be even shorter then and your output into the bag would be more often and more runny so going back isn’t the best option. Hope this has helped a bit for you… Good luck with your decision, its a big one to make but I’m so glad I went for it :)

  5. Gillian McKeown November 28, 2011 at 2:39 am #

    Hi Blake,
    I wrote a great letter to you and when i pressed on submit it didnt go and I ended up with a blank screen damn it.
    I have had my large bowel removed I had it done on the 25th november 2009.
    It was absolutley horrible for a few days after surgery but luckily they give me drugs (Morphine pump) the light goes red and you press it for more of the good stuff!
    I have had UC for 11/12 years, there is no cure for UC this is the cure a totalcollectomy, which is what I had done.
    I wont have a pouch for fear of getting pouchitis (I have a high risk of getting it because of the extent of the collitis as it was from the rectum to the Ileum) there was no area clear!
    The best advice I can give to anyone that is contemplating this surgery is to keep an open mind and remain positive. This is the start of your new life. You get your life back. You can go to BBQ’s in public without messing your pants. you can ride a bike with your children again.
    Name your Ileostomy – I named mine my G.P. says I have taken the right attitude for the surgery I had done. (MRS P = P for POOPER VALVE)
    Yes it makes noises, yes you need to go to the toilet throughout the night to empty your bag but you know what! Id rather do that a million times than to rythe around my bed in agony night after night, cry myself to sleep because the pain at times is unbearable.
    I made my decision before I told a single soul that i was going to have my Large bowel removed (colon) the first person I told was my husband then my mother, she cried I told her not too, because before i had the operation I knew I would regain my life, I knew it wasnt going to be nice and fuck it wasnt (scuse my french but Im being honest) but my Husband and my family and my amazing friends stood by me through it all and we laughed (or should I say they laughed and I tried so damn hard not too cos it hurt to laugh) when it first made a noise I was horrified but I did laugh.
    Prior to the surgery I was on prednisolone and had been on and off it for most of the time I was on it for 1 month after surgery as you need to come off this stuff slowly, Ive been on many differant drugs trying to gain control of myself.
    I would not go back to before surgery for all the money in the world, I am pain free and I can do what ever I like.
    Its your choice Blake just remain positive through out your journey my friend.
    If there any questions you have, dont be shy to ask
    Regards Gillian

  6. Barbara November 28, 2011 at 7:05 am #

    First, your doctor’s assistant needs to go back to school. Having your colon removed is the cure for colitis–once it’s gone, so is your colitis. End of story. I have had my colon removed, in two different surgeries: the first, a subtotal colectomy on New Year’s Eve in 2009, and the last bit, including rectum and sphincter, this past summer. I have, of course, an ileostomy, but I’m actually on a train at this very moment, headed for Toronto to see a specialist about reconstructive surgery that would get rid of the bag (procedure is called Barnett Continent intestinal reservoir).

    Living with the ileostomy is easier than I had expected, but still not pleasant. I’ve had a few leaks, some blockages, but also problems with dehydration and getting proper nutrition, because at times food is through me and out into the bag before I can get any benefit from it. I’ve been to the ER maybe half a dozen times in the last 2 years because of dehydration.

    I don’t know anything about weightlifting, but I think you might be able to go back to it. Ask your doctor. I do know that it took me about 3 months before I truly got my energy back and felt like myself again, after my surgeries.

    I can sleep on my stomach, as long as I make sure the bag is empty before I do. I was very nervous about doing it at first, but now I’m fine.

    It is a bit odd to get used to the idea that the rectum is gone and you can’t fart anymore–but actually, I make a joke of that last one all the time. My other favourite colitis joke is: “Well, no one can ever call me an asshole now!” ;) But for me, the alternative–living with colitis, the bleeding, the flareups, being so sick all the time–is far worse than life without a colon.

    • Rachel November 29, 2011 at 11:05 pm #

      Barbara, you can have your colon removed and still have colitis. It is a systemic disease and will always remain in your DNA. Most people are lucky enough to not experience symptoms after a total collectomy, but there are the rare cases, like myself, who continue to experience flare ups even without a colon. I have about half an inch of rectum left that is driving my entire disease. Still have flare ups (am actually having one right now, even without entire colon and no more j-pouch – i have a permanent stoma).

      • Louise January 2, 2012 at 6:23 pm #

        Rachel, your problems are probably the result of the rectal stump. Having the complete rectum removed eliminates any place for the colitis to exist. Of course, if you have Crohn’s colitis you would still risk flares. A colectomy is not a cure for Crohn’s even though some people do live without flares after the colectomy.

        Hope you feel better very soon!

    • mary August 1, 2013 at 10:04 am #

      hello Barbara, I was very sick and just about not make it and needed to have my whole colon removed 6 months again, was in hospital for 2 1/2 months but when I came home about I month later I develop rectum colitis and giving me so much pain at times with bleeding, plus get very sharp pain in the pit of my stomach when I pass urine at time this all happen after the removing of the colon went to my dr. who did the surgery,but does know .I got drugs for the rectum but I stop taking it as for it bother me so he suggest to have the rectal remove but I am very scare,, as for I still have no taste bud from my colon surgery , by the way I have a bag but gives me a few problems ,dr. does not recommend a j- pouch for me , getting very depress about all this I want to start live a normal life with no pains etc.But I do hope you are doing good. Mary

  7. Cassandra
    Cassandra November 28, 2011 at 10:47 am #

    Hey there,
    First off, I agree with many people here: Your doctor’s assistant is a quack. I can’t think of ANY reason that you would need Remicade after your surgery, other than if you wanna blow your money and take a harsh drug for no reason…

    1) I haven’t gotten my J-pouch yet, but I’m hoping to within this year

    2) I know some people that feel this way, but you can always get a permanent ileo afterwards, as far as I understand, if it doesn’t work out for you.

    3) I was out of the hospital within four days, which is actually pretty darned quick, but I took two months off of work. Not everyone can do this with their job, but I feel that you should take at least this much time off of work, even if you are feeling better. The more rest you can give your body, the better off you are for future surgeries.

    4) I know lots of people that, after recovering, go back to regular routines. I think you have to be careful at first, and may have to alter some of the things you do, but I think everything eventually goes back to normal.

    5) I haven’t even noticed it, to be honest. :)

    6) My bag blows up like a balloon, although I’ve had some bags with vents/filters. They don’t always work, but it’s not really that big of a deal. Step outside, open a window, and fart the bag.

    7) It can be a little bit irritating for me, because sometimes I’m not used to doing some things with it, but I’m a lot happier with my bag than I was with my UC. It’s really not as big of an adjustment as I thought it would be.

    To put everything into perspective, I’m only 18 years old, and I opted for the surgery. I was having a horrible time with my UC, and decided enough was enough. I’m so glad that I did :)

    I hope that everything works out for you!

  8. Trent November 28, 2011 at 1:11 pm #

    Hey Blake, sorry to hear that things are going south.

    I had my first surgery Sept. 2011 and the takedown will be in May 2012.
    1.I haven’t had my take down just yet so I can’t really say.
    2.Even with my bag I feel like a normal person and so if for whatever reason my pouch fails I’ll still feel good with the bag.
    3.Since I had a huge incision it has taken me awhile to get back to normal every day things, but after about a month and half I was able to take my dog for a walk again and I am now starting to get back into cycling after about 2 months recovery.
    4.I haven’t any issues with lifting things but I don’t really lift weights just the trash and groceries.
    5.At first it was very weird not going to the bathroom like normal after going countless times the month before but I have
    gotten so use to the idea now it doesn’t bother me.
    6.I use the bags that have a little valve on them but after a few days it doesn’t seem to work which is right about the time I
    need to change bags.
    7.I am so used to my bag now that I sometimes don’t realize I have it. I mean with a shirt on I never see it.
    Also I haven’t really tried to sleep on my stomach but I can sleep on my side, both ways just fine.

  9. Blake November 28, 2011 at 1:39 pm #

    Hey guys,
    Thanks so much in responding already. I went to get my second Remicade infustion today, but denied it because I got a crazy rash all over my body the day after Thanksgiving. The doctor called it a drug rash and I look like a burn victim so we aren’t going to give Remicade any more chances. I’m going in to talk to the surgeon on Wednesday. I think I’ll probably have my colon out by the end of the week. Holy Fuck, right? I still have no idea what I want to do, whether it be a J Pouch or an ileostomy. After reading all the problems with the J Pouch, I’m still scared as hell so I’m kind of leaning towards wearing a bag, but I’ll talk to the surgeon about it. I’m happily married, have a child, so even though body image is important, I don’t think it’s as important to me as if I were 18 or 21 anymore. Either way, this decision sucks, but I appreciate you guys responding and giving me the good and bad. Chad, I talked to my doctor today, she agrees that her assistant is not qualified to answer some of the questions I asked her and that by getting my colon removed, I will be free of UC. Gillian, I’ve written a response on here before only to have it wiped out too, I know the feeling, I think I’m just as scared as you and Ruth about the J Pouch and the pouchitis and all the complications that could arise. Curtis, thanks for responding, I’ve read all your stories and now I’m in the same boat. I just hope I can get the good results you’ve been having and I like you’re positive words. Thanks man! Barbara, good luck with BCIR, I’ve been reading about that too. Casey, so sorry to hear that your little guy has had to go through all this mess, that should be illegal. I’ve been very attentive to my son’s bowel movements since I’ve been diagnosed with UC (he’s still in diapers) and really hope he never has to go through anything like this. You’re son is gonna be one tough son of a gun! Cassandra, you made me laugh out loud when you said fart the bag! That sounds fun. Anyway, I will let you guys know what I’ve decided and how things go. The more responses I get from this post, the better, so keep em coming, thanks for helping me make this decision that will hopefully make my life better!

    Blake

  10. Blake November 28, 2011 at 1:41 pm #

    Thanks Trent! Wishing you a speedy recovery my friend and a working sphincter in the future!

    Blake

  11. Mike November 28, 2011 at 3:01 pm #

    Try Humic/Fulvic acid. My symptoms were very much like yours. Since the Humic/Fulvic acid 2ozs – 3 times per day plus the SCD diet with some modifications I have very little blood now and very little fatigue. Diarrhea still occurs about 4 or 5 times per day, but mostly in the morning.

    The only thing I disliked about the SCD diet is that I lost 14 lbs (weight which I definitely did not need to loose since I was only 154 lbs before the diet).

    You can purchase the Humic/Fulvic acid at most Naturopathic food stores. The stuff I get is $32 cdn for a 16 oz bottle and is called Master Detox. I noticed an overall improvement within 2 days of taking the stuff. There is lots to read about it on the web, but it is touted as an anti-inflammatory as well as improving cellular nutrient uptake.

    I would encourage you to try this before having them chop out your bowels.

  12. Allyson November 28, 2011 at 5:47 pm #

    Best of luck to you Blake!! Even though many people have already responded, I thought I’d still give you my input.

    1. I had Step 1 of 2 surgeries done December 22, 2010 so it has been almost a year since I’ve had the surgery and my second surgery was March 15, 2011 so I’m not quite at a year yet. But I can definitely tell you that having a J-pouch isn’t even comparable to UC. I was on my death bed, literally, and this surgery saved my life. It can be tough for the first few weeks after your “takedown” surgery, but I would go through all the pain and tears to be where I am now.

    2. I have no regrets in getting a J-pouch. I was very scared like you, and everyone else. So many questions went through my head. The “what if’s” – but the way I saw it was that if my Jpouch wasn’t going to work (only 5% of people with this surgery have failing J-pouches fyi), then I could go back to an ileostomy bag. But why not give it a try? What if it turns out to be something amazing for me? And regardless if I have to get a bag down the road, at least I can say I tried the J-pouch and it gave me so many years of life.

    3. Recovery time after the first surgery (removal of the colon, temporary ileo created, and Jpouch created) was longer than the second surgery. I’d say after about a month I felt comfortable enough to go do things. I couldn’t eat for the first two-three weeks of it so that made me really tired and weak. But before I knew it, I was eating things I hadn’t been able to for so long! :) Recovery time for the second surgery wasn’t as long – I’d say two-three weeks give or take.

    4. You absolutely can work out with this surgery! I’m sure you can do it with an ileostomy, but I never attempted it.

    5 & 6. I have no problems farting at all – many people I’ve talked to say that they can quite do this yet but for some reason I have no problems. With the ileo, it does pass gas and it is very noisy and annoying. And it fills up with air, lots of it.

    7. I wasn’t a big fan of the bag for the three months I had it, but then again who would be? lol But it did give me my life back and allowed me to eat things I couldn’t eat for a long time. I know that if I ever have to go back to one, it isn’t the end of the world. But I’m really happy with the surgery.

    Please don’t let the fear of other peoples stories freak you out!! I talk to so many people with this surgery and the majority of them are very pleased with it. Good luck with your decision though!!

  13. Blake December 1, 2011 at 3:51 pm #

    Thanks Allyson, and everyone for responding. I am going in for the 3 part J Pouch surgery on Tuesday, December 6th, 5 days from now. I can’t help but wondering if I’m making a good decision, but the misery I’ve endured in this 5 month flare let’s me know I am. I’ve only been diagnosed with UC for less than a year, I think I’ve probably had it for much longer and just didn’t know any different, but I’ve pretty much been in a flare all year, I can only remember about 2 normal months of this year. I can’t live the rest of my life like this, I feel like I’ve tried everything, so I am at peace with this decision. Wish me luck!

    Blake

  14. Molly
    Molly December 5, 2011 at 12:37 am #

    1) I am about 2 years post surgery. There are good days and bad days. For me I think it is easier to hold in my poop but it depends a lot on what I eat. As far as the ruined undies-I have my fair share of those too, like I said it depends on what I eat.
    2) I am so glad I have my J-pouch! I would not want to have a permanent colostomy bag, they can be a pain in the ass. I was a senior in high school when I had my colostomy bag, and my first day back to school I had a major blow out…talk about embarassing!!

    3) Recovery time depends a lot on you. I had my last surgery a month before I started college, it was tough but I made it. If you arent doing anything to strenuous you should be fine, just make sure you office is close to a bathroom!

    4) I’m sorry I don’t lift weights at all but I had no problem when I was riding horses with a bag.

    5) Well it is nice to be able to poop in front of everybody… :) I would say try the J pouch, and if it doesn’t work fo you they can always reverse it. I wasn’t psychologically scarred after not pooping/farting for a few months. You can still fart with a bag but its just not out your butt…

    6) I had bags that had a little carbon filter on them to filter out the air without being smelly. They would usually last for a few days then the filter owuld get clogged and they would inflate. It is relatively easy to let the air out of your bag so it doesn’t look like you have a pillow taped to you.

    7) Like I said it has its ups and downs, but your right you will get used to it. I also liked to sleep on my stomch but I ended up adjusting to sleeping on my side. I had a huge fear that if I slept on my stomach I would end up popping the bag like a balloon in the middle of the night!

    Best of luck in your surgery!!
    Molly

  15. Stephanie December 19, 2011 at 6:29 am #

    Blake I am 11 years post surgery and had mine done at the age of 10 so here’s what I have experienced

    1) First year or two I was quite tired and had to take frequent naps, but I was also in a stage of life where a lot of growth happens (11-12 years old) so I’m not sure if this is all due to surgery. Going without cramps and bleeding is definitely worth the down time though. 11 years later I RARELY if ever have problems holding it in, I was told post surgery to work on holding in bowel movements as long as possible to stretch the pouch. When I get the urge to go I don’t immediately have to run to a bathroom, I can usually wait 30 min to an hour without having any accidents.

    2) My experience with the ostomy was horrendous. I don’t think I ever left the hospital with it because of severe dehydration that required me to be on constant IV fluids. I believe I had takedown surgery about 2 weeks after the initial colectomy which resolved my dehydration issues. I don’t regret the j-pouch to this day.

    3) Because of child labor laws I wasn’t working at this time :) But I think I missed several months of school.

    4) I can’t answer this from the stoma experience but after j-pouch surgery I was enrolled in ice skating lessons to help get my strength and endurance back. I would do half hour lessons and have to nap 2 hours to recover, it definitely got better and I competitively figure skated for 8 years until college. Softball was a big part of my high school experience and I had no difficulty in participating. I also lifted weights in high school (about 3 years after surgery) with no restriction and even held records for my tiny 103 pound weight class in squats, clean lifting and bench press.

    5) Personally hated the bag because it leaked a couple times and at 10 years old I wanted nothing to do with cleaning up that kind of mess, especially at school.

    6) Mine inflated just like a whoopie cushion but I was never introduced to the bags with air filter. I have worked with many ostomy sites while working in a hospital and typically we have to “burp” or fart the bag which is pretty simple.

    7) Can’t say, I have the j-pouch.

    Another little FYI, at this point I take only 2 over the counter Imodium pills per day (sometimes more if I feel it is needed) and make sure to avoid foods that cause me cramping. Yes, I get cramps after having a total colectomy but only from eating certain foods like peanuts that are in the shell, fruits with a peel or popcorn when I eat them alone, when eaten with a full meal I am fine.
    That is currently all it takes for me to maintain a 4-5 stool per day lifestyle with no blood or cramping.
    Hope surgery goes well!

  16. Marty March 10, 2012 at 12:41 am #

    Hi

    I can appreciate your concerns. I had my reversla six weeks ago. First five weeks were miserable. Last week ive had as few as three bms. I didnt even thinknit was possible. I also do not have watery bms. Normally its pretty solid and a few just like pre colitis. Once I was allowed to add fiber things got way better. Right now its just painful to eat veggies so I avoid and just take the fiber supps. First couple days like this I thought it was too good to be true. I have also farted with success but still need to improve there. The bag in the beginning was a nightmare.

  17. Erin December 12, 2012 at 9:21 am #

    Hi Blake,
    I read your story today about getting your colon removed and how you have been doing since last year. It sounds like your doing pretty good? I loved reading your story and how you worded everything had me laughing and crying too. My dad is 63 and has had colitis since he was 20. I remember he would have flare UPS when I was a kid, but I never really understood what he was going thru. I again thank you for your story, it really helped me understand how much pain he was going thru, and yet remained strong for us his family. He never missed our sporting events even when he probably should of been home taking care of himself. He had a colonoscopy last month and they found several polubs and a pretty good size tumor. He has been diagnosed with colon cancer and has to get his whole colon removed. He has surgery scheduled for December 21st 2012. I’m trying to research as much as I can about the surgery and what it is all going to entail. I’m going to share your story with my dad, I know he’s scared to death about his surgery. I want him to see there is light at the end of this long tunnel of pain. Thanks so much for sharing your story. I hope all is going good in your life and your adjusting to all the changes you had to overcome. I know you shared your story last year, I hope you will still get this. Thanks again for giving me and my dad hope that making the choice to remove his colon will not be the end of his active lifestyle.
    God Bless you and your family. You are a true fighter and should be very proud of yourself for overcoming these obstacles life has thrown your way.
    Love & respect

    Erin Allen from Stockbridge,mi.

  18. Blake December 14, 2012 at 12:42 am #

    Thanks Erin! Luckily, I decided to re-read this post today as I haven’t seen it since last year about this time. I’m sorry your dad is going through all this, but I think he’ll be happy he did. He’ll get rid of colitis and cancer all in one swoop. Just to put a positive spin on things, I’m doing really good. I’m very happy I had the J Pouch surgery and things are back to normal for me. It’s a new normal, but it’s not bad at all. It’s no where near what I thought it would be, I kind of feel like an idiot for worrying so much about it. It did me no good. I’m active as hell, working out 5+ times a week again, eating good and the best part is UC free. I wish you and your family the best! Your dad will be just fine with a daughter like you by his side.

  19. Lisa P December 14, 2012 at 3:21 am #

    Wish Id had it sooner! No guts all glory! Life colonless is amazing. I nlog my journey w colectomy includimg recovery pics etc.. I’m very straight forward. I have zero regrets. 1broad.blogspot.com. best of luck!

  20. bill h January 3, 2013 at 7:19 pm #

    apparently I am a exception for most UC people as I was diagnosed in march 1965 and was in the hospital for 2 months and the doctors wanted to remove my colon but I said no and forced myself to eat a lot of food to gain wait back from 145 to 200 . Anyway learned to live with it and things got better when I discovered that stress and diet were the main causes . When I met my wife whose family had an orange grove and started eating a lot of tangerines and my symptoms went away then returned when there was no more tangerines. anyway I have survived with some flareups controlled with pred but for last 4 years no flare ups and attribute to finally not letting stress to get to me and also a hi fiber diet . But my colon check last october found precancerous polups so doctors say I need to have my colon removed ( but at least was able to make it 47 years ). therefore trying to get as much info as to my options- appears the permanent outside bag lets one recover the quickest. If I was younger would consider the inside pouch – anyway thanks for info . Note – my colon did better when it was full rather then empty and used fillers like fiberific when active and broculi when not active

  21. Pam January 7, 2013 at 3:54 pm #

    My 13yr old grandson became very ill August 2012. Sept 11 he was diagnosed with UC. We started prednisone orally but was hospitalized soon after. We did IV steroids followed with oral prednisone and asocol and a couple of other meds. His colon was horrible. within 3 days home hopitalized again. To shorten the story we tried steriods,remecade, the adding methaltrecate. He dropped 40 lbs in a couple of months. Nothing worked. He was dying from the cure. Went went to yet another GI/UC pediatric doc and surgeon. He had his colon and rectum removed day before Thanksgiving this year. He had the j pouch part 1 and 2. He ended up hospitalized all of Dec until his takedown (part 3)on January 2, 2013. We are still in hospital because we need to make sure he builds back up. Dehydration has been the problem. He dealt with this like a trooper but is glad the bag is gone. He is already controlling fairly well and on the road to normal routines hopefully. We are sitting in a childrens hospital when we ran into this site. I think this made things much easier as we are sharing the same feelings. Thanks for the input and stories.
    Pam

  22. Perry February 17, 2013 at 2:24 pm #

    At age 70 I am scheduled for the total colectomy/ieostomy March 7. I have read all of these kind reports. I developed UC late in life, at 64!
    1. Can folks give specific brand names of the BEST bags w filters to obtain?
    2. Immodium and fiber diets seem constant recommendations. Any other meds and food pearls?
    3. How to avoid dehydration? That seems to be the biggest problem postop.
    4. Suggestions to speed up recovery?

  23. Connie March 8, 2013 at 5:24 pm #

    I was diagnosed with ulcerative colitis when I was 20 years old. I lived with it for one year before having an ileostomy with total removal of rectum and anus. Life without colitis was so much better and having to wear a pouch the rest of my life was the price. After surgery, I finished my last semester of college and started a teaching career. Over the next 40 years of my life I had two beautiful boys, taught middle school for 33 years, was divorced and remarried (last 16 yrs) and have been retired for the last 5 years. I never missed a day of work because of my condition and have married a wonderful man who loves me very much. I don’t think I would be here, at age 61, to write this if not for the surgery. It hasn’t always been easy, but I feel that I am extremely blessed.

  24. Elaine July 22, 2013 at 9:28 pm #

    My husband has had his j-pouch for a couple of years. That helped him a lot as he is very physical such as water sports and such. Unfortunately he had multiple hernias develop and had mesh put in his entire abdominal wall. One year out of that and he is doing better. The plus of being rid of the UC is not having to worry about colon cancer and his being able to eat whatever he wants. The negative is he still spends a lot of time on the toilet.

  25. Christa August 31, 2013 at 6:47 pm #

    Blake, was wondering if there is a way to contact you via email or fb something my husband is currently in the hospital and facing having to have his colon removed in which he is very reluctant to do. I thought it would help for him to have someone to talk to. He is 30 we have 3 kids and his spirits r down. Thanks in advance

  26. Al January 1, 2016 at 9:00 am #

    I had diverticulosis (didn’t know I had diverticulitis until my colon ruptured and had to be entirely removed in an emergency surgery to avoid death) and had the bag for a year but it has been about a year since my reversal surgery.

    Here are my thoughts:

    Living with the bag was a nightmare for a single 32 yr old. Leaks, its like changing a diaper all day and a general bummer due to indignity. For me at least.
    I will say that once I bought the flushable bag liners from Canada (US insurance/med providers want you to charge the expensive bags to INS, but they suck to change, a shameless scam and I still get harassed by med providers trying to sell me ostomy supplies) things became a lot easier. With the flushable bag liners, you are in and out of the bathroom in a few seconds with NO mess, NO drips/leakage……it was honestly so much more sanitary then anything else, including going #2 naturally :)

    Life since my reversal surgery – generally pretty good. I honestly feel slimmer and lighter on my toes without my colon. Since the colon is 4-6 ft long and usually just storing peoples poop at any giving time, without one you can feel the difference.
    I’m in great shape and there isn’t anything physically I cannot do.
    I go to the bathroom twice a day on a good day and have watery or semi formed poos.
    I average 3 times a day.
    I am more susceptible to diarrhea. I get it often when trying new and exotic foods or excessive alcohol.
    Beer doesn’t sit to well, but thats only gonna add years to my life if I drink less.
    I used to never go #2 in a public restroom, but not now.
    If I get the flu or food poisoning…….its a nightmare.
    If I am eating a lot or big meals…I will have urgency to go. Never had an accident though.
    I will avoid things like forest camping or being in places that only have outhouses.
    I have to pay attention to drinking more water and staying hydrated.
    I can basically never have colon cancer.

    Overall, I don’t really miss my colon too much.

  27. jennifer clayton April 2, 2016 at 8:34 am #

    I waited a long time before I got my entire colon taken out, they reattached it to my rectum. I was very sick, even vomiting stool, I would go three months at a time without having a bowel movement. I had Ibs times a million but it was also colonic inertia. The surgery itself and the recovery were okay, I had the best doctors, and it was a really hard case from what she said, my colon was huge, I would take tons of laxatives but nothing worked. so for me it was life or death. When I came home it was too soon and I had a blockage, so I ended up going back. I would say get the right doctors and make sure your ready to go home. Life now, is better then it was before, I can’t work unless I want to work in a bathroom all day. I know they said tooth paste consistency but mine is full on blow out the runs and I go anywhere from 7 to 14 times a day.. at night I wear depends and I am a young well I consider myself a young person. I can do some things but forget the beach when It comes to food I have to figure out time wise where I am going and when will I get there, I can do things but I must be aware of all the bathrooms. my case is different I have a kidney disease and it is autoimmune so I am sure that doesn’t help things. this surgery saved my life. it may not have given me the best life but it gave me some life, I do art, and read mostly solitary things, use to be in the navy I use to be a nurse, I miss being needed but now this is the life I have, you have to accept what is. I use to be in the ER really sick, now I am rarely if ever there. so there are a lot of pro’s and con’s you just have to decide what is right for you. all these stories they are all different but none of them are you. this is such a huge decision weigh it well, but above all else make it your decision. not based on what anyone else wrote. we are all different we all have different doctors. do what is right for you and your family. I wish you luck and good health my friend..

  28. Tori April 30, 2016 at 4:12 pm #

    Jennifer, I sure hope you read this. Your story was not only the most recent, it was the only story mentioning colonic inertia. That is what I had. The only way I could go was to use an enema bag. That gets really old, really fast. It’s painful as hell, inconvenient and your entire life revolves around bowel movements. I could of taken and entire box, bottle, container of any laxative you can name and it would do absolutely nothing for me. It was the enema bag at least once a day if not more. This was 13-14 years ago, so my enema memory is fuzzy. However…..my memory of my colon removal is not. I had mine removed about 13 years ago. I went back to the surgeon 3 wks post op and complained of mid back pain, a lot of it. I could barely stand up straight. I had never experienced anything like it. And what did he do you ask? The idiot increased the strength of my narcotic pain med. This was on a Wednesday. 2am the following Sunday my bowel ruptured. I woke up in the ICU with peritonitis, a central line in my chest, about 12-14 IV bags hanging and an ileostomy bag. After 6 months of leaking, skin around the stoma burning like hell fire from stomach acid and the glue I had to put directly on the burnt skin and a deep depression like I have never before or since experienced, the ileostomy was taken down.
    Unfortunately, this was not the end of the story. Apparently I was very, very contaminated, to use my new surgeon’s words. I had waste blown throughout my entire abdominal cavity. So due to the surgeries and the infection my abdominal cavity is now adhesion central. All my internal organs are adhered to my abdominal wall. My adhesions are reeking havoc on my digestive tract. I have been hospitalized many, many times over the years for partial obstructions (that eventually cleared with bowel rest). Bowel rest…..nothing by mouth, hooked up to an IV with an NG tube up your nose. They claimed the NG tube was necessary to keep you from vomiting. One time I vomited anyway and because of the tube it came out my mouth and nose. Stomach acid out the nose is quite painful. It also caused a sinus infection and a small abcess around my right nostril. I have a small notch of missing skin on my right nostril due to that infection. So now I refuse the NG tube. I wish I knew I could do that years ago.
    I am now to the point I can’t have a bowel movement without the use of Milk of Mag. I am literally on the verge of poisoning myself with magnesium. I take 8 tablespoons per day. I must be super careful about what I eat or it’s in to the hospital I go. I need to keep myself in a constant state of diarrhea or I will obstruct. Thank God I have finally found a surgeon that is actually listening to me. I have been doing the Milk of Mag thing for over 2 years now. I have been in the ER and sometimes overnight due to severe dehydration and bottoming out my potassium more times than I can count. It’s a wonder my heart just hasn’t stopped due to the wear and tear that my body is going thru. So after much searching, much suffering and way to much milk of mag, I will be having surgery probably next month. I am meeting with my surgeon again next week. For a couple of months now he as been pouring over years of med records, scans, xrays, mri’s, lab work and his own testing. He can see what looks like an interal hernia among other things and agrees, it’s time to act. It’s gonna be a long , 6-8 hour surgery, it’s a huge deal, but it could change my life for the better. I am so glad I found this page and was able to vent a bit, even if no one reads it :) It’s very hard for those who have not been thru such an ordeal, or a similar one to even begin to understand. Good luck and many blessings to all of you.

  29. Emanuel October 3, 2016 at 1:33 pm #

    Hi guys, well I’m in the hospital right now actually getting discharged after 2 months admitted, I came in with a lot of abdominal pain and lasted me a month until they had an x-ray done on me and discovered that I had an hole in my colon, so they took me to emergency surgery, total colon removed, woke up next day really sick I had many different of infections going on, my cut was half way open according to my surgeon was because of the sick I was and all the infections just in case if he had to get in there again. I went trough a tough time lots of pain and learning how to walk again, my surgeon is very happy and positive about j pouch 6 months from now, so I tell you the pain of surgery is only for a couple of weeks, and living with uc is a lifetime pain. I’m worried but I’m so happy at this moment.

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