I Have a Question That Needs to be Answered

Sammys ColitisSome Sammy Facts to Start Out:
Hello, my name is Sammy, and i have had Ulcerative Colitus for over 4 years now. I’ve recently turned 23 and i am frustrated beyond belief with the condition i have. I try to be up beat but its difficult when the energy keeps going out the other end 5 to 6 times a day. I don’t work, i can’t work but fill my time with writing and doing art work. I love writing, I am actually in the progress of almost finishing my autobiography. As you can imagine, there will be some parts of me talking about UC but i have a lot to say.
Sammy’s Symptoms:
I’ve had UC for over 4 years now, on a good day i go about 2 to 3 times a day, on a bad day, i can go up to 10. Sounds unreal right, but its true. I’ve spoken to over 20 different doctors over this. Just recently i’ve had an increase of pain just under my breasts that feels like some ones pressing hard on me. I take a strong co-co damal to relieve myself of the pain, but it can make me really drowsy. I would do a lot for a stress free life.

Sammy’s Story:

I don’t have a life. I feel very restricted with the outside world. If i had the chance, i would be out and about all the time. I would do so much just to have a normal life and have a job and more people to meet and have adventures with. I know for a fact that i gathered my problem of UC through stress. I am better with my stress worries than before. Living with a mentally and partly physically abusive father never helped growing up, but i am happy to say that i am no longer in that environment of that dilemma. I studied art and design at college for 3 years and carried onto university at Southampton for a year and a half. Unfortunately, i had to drop out of there as my stomach condition took over and left me (almost literally) nowhere. The only thing that keeps me going is my writing and the urge to learn and do so much more. I guess i should look at it from a different angle and realize that its given me the opportunity to get through to writing my biography. If i didn’t have all this spare time, i wouldn’t of learnt the knowledge that i know right now. I am grateful for this.
I’ve heard of the ileostomy bag??? and was wondering if anyone (sorry to say but preferably a girl) similar age as me has got the bag on the side.
I’ve done some research on the bag on the side and just want some straight forward answers.

My questions are:

-Is it worth doing?

-Is life easier with it?

-Is life better handled to get on with?

-Is it okay to sleep with at night.

Questions like that. Please get in contact with me with any answers, i am desperate to know ? :)

Where I’d like to be in a year:
Happier with my problem. Preferably have a solution and a number 1 best seller on the shelves of every book store. Ha ha, you never know :)

Sammy’s Drugs Right Now:
I am currently taking Lansoprazole to control the amount of times i go.
I also take a strong co-codamal (15mg/500mg) for when the pain really kicks in. Plus it 80% of the time gives me a good nights sleep :)

written by Sammy

submitted in the Colitis Venting Area




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ileostomy

32 Responses to I Have a Question That Needs to be Answered

  1. TiiniTete
    Tiinity July 7, 2012 at 5:59 am #

    Hi Sammy,
    I am sorry to hear that you are so limited to your house.

    I had an ileostomy for 9 months (8 years ago when I was 22) in preparation for being connected with shorter colon. These are my thoughts.

    Having an ileostomy is not such a big deal, you can live a full life. You can work around all smaller obstacles. Sure being at the beach is not like you are going to want to get a tan on your stomach. For me it was a bit sad that I would never be able to go in a short top any longer. And you need to think about the clothes, how to dress to hide the bag. This part is probably much easier for male…
    The largest problem for me was with gas. The filters on the bags always got jammed and stopped releasing gas… This made the bag to become like a balloon and this was a reason why I would often go up in the middle of the night.

    If I had the problem of being very limited in my everyday life and If I would shit my pants often then yes I would consider it! It’s not the end of the world. I am in a way prepared that I might be needing that type of surgery in the future and the doctors are in a way preparing (mentally) me for it already now. What I don’t like is that I would for the rest of my life be dependent on the bags, like I could never stop using them…

    However I am now trying out the SCD/GAPS diet, not like a last resort but since I feel better on it. Somehow I believe that I am healing myself and that in 10 years I’ll be ok. A few years back I started looking at my life and removing the parts I didn’t like, now just 6 months ago I removed the last thing… Now focus is on health, wellbeing and happiness, in a big picture.

    Is it worth it?? It all comes down to how your life is today and what kind of solutions you like to take.

    Good luck on the book!
    /tiinity

    • Sammy
      Sammy July 9, 2012 at 8:38 am #

      Hi Tiinity, i didn’t expect to get to get a response straight away from anyone, and i can’t believe that i’ve had 8 responses so far. Thank you so much for the advice and talk. Funny you should say about the gas, because i suffer quite terribly with it. And i like to wear nice things but just never fully enjoy myself if i go out as i’m constantly thinking about my stomach. You know, theres always those horrible questions of:
      ‘Oh God my stomach is hurting, will i make it to the loo on time?
      If i go for a walk, just to get some fresh air, will i get back in time?
      I’ve soiled myself a few times and obviously hate it, but would just love that choice, that freedom to go further than rushing back to a poxy loo.
      Again, thank you so much for what you’ve said, thats going to be really helpful to me :)
      And hey, if your interested in reading about my biography, i managed to set up a blog on the net, its:
      http://evajevaisbecausewecan.blogspot.com/
      Check it out if you have the time, my 1st chapters on there :)
      Have a nice day x x

  2. Per Vork July 7, 2012 at 6:50 am #

    Hi Sammy

    I know how you feel, i’ve been a prison in my own house for a very long time, due to my UC and its very frustrated, i’ve had UC for over 10 years now, and im pretty much done with it and i have told my Doctor that on my next flare up, just to go ahead and schedule me for a J-Pouch surgery, i think you should consult your Doctor, to see if you would be a candidate for a J-Pouch, then you atleast only have to deal with the ileostomy bag for about 3 month, which isnt bad, that time will go fast.

    -Is it worth doing?

    Its a tough question, but over the last 10 years, i have come to this, you can either learn to live with it and let UC control your life or you can do something about it (surgery) and live a happy life after that cured from all UC.

    -Is life easier with it?

    i would say Yes, just for the fact that you have no pain, no urgencies, 100% cured, but yes comes with the price, the ileostomy bag, i think its something you can easily get to live with, my Dad have the perma ileostomy bag on the side and to him its was well worth it, he now have a life, he can go outside without having to look around for a restroom every 10 mins. I do agree with Tiinity, it probably is easier for a man to have the ileostomy bag, but atleast with the bad you can move on with your life.

    I hope this will help you on your decision.

    • Sammy
      Sammy July 9, 2012 at 8:45 am #

      Thank you so much for your reply, this is just what i need, a straight down the middle answer. I am definitely going to consult my doctor about the bag, i am so ready to grab life and start living. I want to see everything and not be so limited. I feel that if i took that extra step onto the bag that things would be much improved.
      Your message has been very helpful, thanks again. :)
      I just told tiinity that i am in the process of almost completing my biography, and that i have a blog with the 1st chapter included. When you have the time, check it out :), its
      http://evajevaisbecausewecan.blogspot.com/
      Have a nice day x

  3. Charis July 7, 2012 at 11:53 am #

    Hi Sammy – I’m a little older than you at 31. I was diagnosed with UC at 29 and within six months had to have an emergency total colectomy. I tried a j pouch for almost two years and felt like I still had UC the entire time. I ultimately chose to go back to an ileostomy and it’s the best decision I’ve ever made. I no longer worry about where the bathrooms are or even if they’re clean (though it’s certainly nice when they are!!), I am not confined to my house or tied to my toilet, I can exercise for hours without feeling sick, and I sleep ten times better (I usually get up once a night to empty the bag). After the first two months, my gas levels went down and now I rarely get gas so my bag does not balloon up or burst. I can eat almost anything I want – including raw veggies, nuts, fruit, etc. Everything in moderation, of course. I wear all the same clothes that I used to wear – so low cut jeans and tight shirts, though I find that as I get older I prefer the looser fitting, blousy shirts. I got married AFTER I made my ostomy permanent – so to those who worry that someone won’t want them with a bag, that’s untrue. While my life is so much better with an ostomy, I won’t lie – there ARE days that I get frustrated with it or wish I didn’t have it. But then I remember how sick I was and what all my ostomy has given back to me in my life and I feel better and look for the next day to be better.
    Charis

    • Sammy
      Sammy July 9, 2012 at 9:55 am #

      Hi Charis,
      Thank you for your advice on the bag and how it changed your life. Thats another thing i worry about having… relationships. Having UC has controlled my life to a level that i can’t imagine having a relationship with another person-to put them through the embarrassing thought of me running to the loo all the time and not being able to relax. I just image that if i had the bag put on the side, i just wouldn’t feel so frustrated with it all. If someone asked me to go and have a walk with them, i would do, no questions asked.
      Thanks for your reply, much appreciated :)
      Have a nice day x

  4. Blake July 7, 2012 at 3:47 pm #

    Hey Sammy,
    I’m a 30 year old father who got hit with UC in 2011 real hard. I was going 15-25 times a day, bleeding almost every time. I tried all the drugs, the SCD diet and everything else I read might help my condition. I still ended up losing my colon after all this. I’ve chosen to get a J Pouch and just had my 2nd out of 3 total surgeries two weeks ago. I’m finally feeling a little better after this surgery, it was harder than the first because of complications. I have had an ostomy bag since December of 2011. This might sound weird, but I love it. I loved it till I had the second surgery and now my stoma is flush with my skin rather that protruding like last time. It’s a little harder to deal with, but I don’t have to have it long. With an ostomy bag, I wasn’t trapped anymore, could do whatever I wanted. I got back in the gym and lifted weights which is my hobby. Nobody would ever know I had it except I tell pretty much anyone. To the questions you asked in your story like “is it worth it,” and “is life easier.” I would say yes, but I do think you have to have a positive attitude about it. I’ve read stories of some people not being able to cope with having an ostomy bag and absolutely hated it, but I think if you have the type of attitude that lets you think of how wonderful this thing is and how it gives you you’re freedom back, you too will be glad you had it done. Don’t get me wrong, it is a lot to take in at first and I think everyone will go through a period of time where they don’t like it and wonder if they’ve made the right choice, it’s a big decision. You also have options, you could get a J Pouch so you wouldn’t have to wear the bag permanently, you’re very young and I would explore that option. Good luck!

    Blake

    • Sammy
      Sammy July 9, 2012 at 10:07 am #

      Hi blake,
      Thanks for your reply, funny you say about working out, i miss exercising, as i used to do this quite a bit. I remember trying to do exercise at university with a friend. We were working out to a video and i kept asking her to pause it so i could run to the loo. It can be so imbarassing alot of the time and i’m never relaxed. I just want that choice and freedom back to do the simple little things again… properly. I yearn for so much life, i really do appreciate everything good that comes my way. Thats what i’m writing about mostly in my biography, check it out if you get some time :) its :
      http://evajevaisbecausewecan.blogspot.com/
      Thanks again, have a nice day x

  5. Karen July 7, 2012 at 5:32 pm #

    Hi Sammy,
    I was 20 years old when I had my surgery. I have a continent ileostomy. The type of surgery I had, they now call BCIR. Basically they make a pouch inside that holds the feces until I put in a catheter to drain it. I wear no bag. The Surgery allowed me to live again. I was able to go to college and get married and have 3 children. I know people who have the bag and they also love it. If you are worried about having to have a “bag” then research the other types of surgery. As mentioned above there is the J-pouch also. Either way you will be much happier and healthier too. I suffered with UC since I was 13, before my surgery. UC was was keeping me a prisoner in my home. It was very difficult to watch my friends going out and having all this fun while I was just sitting on the toilet all day or on the couch in pain. I wish you all the luck in the world with what ever decision you make. You will be soooo glad when that disease is gone. I will be looking forward to reading your book and now I can read it outside under a tree and not in the bathroom. Ya know? Much love to you!

    Karen

    • Sammy
      Sammy July 9, 2012 at 10:20 am #

      Hi Karen,
      your message… i wanted to cry, i am so jealous. To go out and not worry, to sit under a tree and have your mind be somewhere else, or to go to the seaside without wondering where the next loo is, okay… now i’m crying :) Thats exactly what i wanted to hear. I want to have the choices and the freedom to get out when i can, and when i want to- on my terms. A horrible memory is me taking my dog out for a walk one day (thats not the horrible part) and just completely out of the blue, my stomach dropped and i soiled myself. Thank God no one was around, i had to walk all the way back to my home in a long skirt and it felt awful. I literally got in the shower with all my cloths on as i just didn’t know what to do. But your message has made my day, i’m looking forward to seeing my doctor and talking about my options for the bag or whatever’s best. Thank you so much, again, also… i have the 1st chapter to my book on a blog, check it out when you get the time :) its:
      http://evajevaisbecausewecan.blogspot.com/
      Have a nice day x x

  6. Paige July 7, 2012 at 7:27 pm #

    Hi Sammy,
    I’m not quite your age (14) but almost a year ago I had my colon removed, and had a colostomy for 3 months. I was diagnosed with UC when I was 10 and it was really, really hard to deal with. I was on steriods for a bout a year anda haldpf before my surgery, and then on them for 2 more months after my second surgery (when my stoma was taken down) for 2 more moths, so basicly 2 years on predisone. If you are truly suffering, meaning you are always on predisone and can’t get out of the house, then yes, it is worth it, bit it’s also very, very gross. It takes a few moths to get fully healed after the surgery, and that means you can’t do anything because you are in a lot of pain. I had a lot of complications after my first surgery, which can happen but not to everyone, and i was in the hospital for 2 weeks. It’ very hard the first month or so to sleep, because I was parinoid about it falling off or leaking in my sleep, which haooened, but it gets easier. Its not that comfotable (you can feel yourself poop), but its a lot better than having flare ups. Having a collectomy, idps the only cure for UC, and your life will never be normal, but its a lot better than having to worry :)
    -Paige

    • Sammy
      Sammy July 9, 2012 at 10:27 am #

      Hi paige, thats very useful information :) It sounds like you’ve been through alot and your younger than me. I thought i had it bad, :/ But everything you’ve said sounds like an improvement, good luck with your future.
      Thanks again for your message,
      have a nice day x

  7. Megan July 7, 2012 at 10:42 pm #

    Hi Sammy,
    I am pretty much in the same boat as you, but I was only diagnosed at the start of this year. Being 22 and needing to go to the bathroom all the time or worry about where a toilet is wearing me down, I dont know how I will go doing this forever. I have thought about the surgery too, but Im not so sure about the J pouch, Ive heard that you still need the toilet many times a day, is this true? (anyone with a j pouch)? I realise it is a big step to have the colon removed but it would be awesome to have no pain and not to spend hours in the loo!
    I would be interested to see what you decide and why.
    Cheers, Megan :)

    • Charis July 8, 2012 at 6:19 pm #

      Megan, I had a j pouch for almost two years and yes, I still had to worry about the bathroom and was still really restricted with what I could eat. I felt like I had UC the entire time and still had diarrhea over 20 times a day. However, there are many people out there who have great experiences with their j pouch and only use the bathroom 2-3 times a day (my surgeon told me 5-7 was at the top of the normal range- so long as they were not diarrhea). It’s an option worth considering if it’s available for your situation. :)

    • Sammy
      Sammy July 9, 2012 at 10:38 am #

      Hi megan,
      Thanks for the message, i know how the running to the loo issue can wear you down, i hate it. It wasn’t easy to explain to some people my condition. The fact was, they didn’t understand and they actually thought i was avoiding them. Ridiculous, i would of gone anywhere in a second. I am desperate to get out there and have a life again. I’ll let you know what happens with the doctors and the decision i make,
      Talk soon :)
      Have a nice day x

      • Charis July 9, 2012 at 6:43 pm #

        Definitely keep us posted!!

  8. Gutless Wonder July 13, 2012 at 4:06 am #

    I had emergency surgery after almost losing my life. I was going to loo over 30 times a day and losing bucket loads of blood each day. My J Pouch has failed, I’m still going to the loo 30 times a day, get zero sleep, chronic pouchitis, continually have to go in to hospital
    for dilations as my intestines keep closing up and suffer chronic pain. Unless you have pan-colitis and no meds have worked I doubt a surgeon would recommend J Pouch surgery. 6-10 times a day does not sound like a lot, more like a moderate attack. What has your blood work said? Are your inflammatory markers up? Etc…

    I hate my J Pouch and can’t wait to get rid of it. For me it’s been from one nightmare to
    another.

    • Sammy
      Sammy July 13, 2012 at 8:56 am #

      Hey there,
      My stomach problem isn’t as bad as yours. I don’t pass any blood which i’m extremely lucky with. In the beginning i did, but not anymore. I’ve been through steroids, had countless blood tests. the problem with me is, when i go out, i panick and most of the time, when that happens… if i don’t get to a loo quick enough, i will soil myself :( So i think that considering the bag on my side may be the best option for me. You never know, it could calm me down more and set me straight. I’ve spoken to my doctor and they are setting up an appointment for me once they sort some stuff out for me. Just for a chat about the whole situation :)
      I’ll get back to everyone on my decisions
      from sammy

      • TiiniTete
        Tiinity July 14, 2012 at 8:28 am #

        Hi,
        I have struggled with a social phobia related to UC. My intestines would make a lot of noises and this would make me so stressed out, specially when I needed to be in a class or work related meeting, and of course being stressed about it made it all worse… I guess I just started to think, well if it sounds a bit from my stomach it doesn’t really matter that much and if I am not comfortable I’ll go to the loo… And then just started to follow this and for me I didn’t worry anymore, but sure in some situations it comes back to me.

        My point is that it sounds like you have a bit of the same problem and maybe you should look into resolving that in another way than surgery. I mean if you learn how to deal with the stress then you will have less accidents and maybe that solves it for you?? Sure there is the UC, but managing stress is also a big issue.

  9. Catherine July 13, 2012 at 4:38 pm #

    My 19 year old daughter hasn’t had any problems with her jpouch (knock on wood). She got it May 17 and only has 2 to 3 poops a day. I read Gutless Wonder’s response, and I understand there can be complictions with having the jpouch. If anything did go wrong with the pouch, my daughter would happily go back to the bag. Once she got used to it, she didn’t mind it at all.

    • Sammy
      Sammy July 14, 2012 at 5:47 am #

      Thats good to know catherine, thank you. I like to hear other peoples opinions on the experience of the bag etc. Cheers :)

  10. Gutless_Wonder July 14, 2012 at 5:05 am #

    Hi Sammy,

    One thing I forgot to mention is that having the J Pouch surgery puts all women at a 50% risk of infertility. Sadly I’m in that 50%. Ordinarily IVF would fix this but for other reasons I can’t have IVF. So if youve not had children you need to consider this.

    • Sammy
      Sammy July 17, 2012 at 11:01 am #

      Thank you for letting me know. I have to admit that children are not on my to do list in the future. If i meet the right person and it all feels right then it may happen, if not… thats life :) But thank you anyway

  11. Bryley Tautz July 19, 2012 at 12:41 pm #

    Hi there,
    I had Ulcerative Colitis for 12 years until I had my colon and rectum removed when I was 27.In the time I had UC I was probably in remission at the most for 6 months. It was hell, but I managed a career in the RAF for 10 years ( was medically discharged in the end), got married and had a baby. After having my daughter Kiki it was decided that I would need an ileostomy with the view of having a J pouch. After initial surgery to remove my colon and create an ileostomy, all was well for a few months until my Colitis returned in the tail end left. It was decided to remove my rectum and create a J pouch which was done in November. I was due to have the pouch connected and bag removed but had a very serious blockage due to adhesions. I was very poorly. However I have had my reversal a few weeks ago and all is well with my J pouch. My ileostomy was a life saver and gave me some of my life back but now I have a functioning J pouch. I couldn’t be happier, I know I could develop complications with this but you can also with an ileostomy.

    • Sammy
      Sammy July 23, 2012 at 8:07 am #

      Hello Bryley,
      First of all i would just like to say WOW! It sounds like you’ve been through alot. I haven’t had any surgery procedures yet, apart from the camera going in and having a look around, but nothing major. Its interesting to know and once my doctor has sorted himself out with my hospital records, i’ll be looking forward to that chat with him. Thanks for your comment :)

  12. Laura July 19, 2012 at 11:59 pm #

    hi, im 27, had my colon removed at 25 and had the bag for 20 months before the final surgery for the j pouch. i have good and bad days but on the whole im much happier than i was with the bag, got a lot more confidence and being able to wear what you want makes a big difference. i was worried about the fertility side of things but my sugeon and nurses told me not to worry and it snt 50% risk. im sure everyone is told differnt things but it’s not a set 50% risk, you need to discuss it with your dr. ultimately has to be your decision. i go approx 5 times a day with my pouch, i work full time and i have my life back. i tend to go in the twice in the morning, once at work, then a few times in the eve. your body gets into a routine. you need to discuss all options with your dr tho. good luck :-) xx

    • Sammy
      Sammy July 23, 2012 at 8:11 am #

      Hi Laura, thats great to know, i was wondering how it works with the pouch and how people work around it. I would love to go back to work, but obviously i am afraid of that dilemma of my stomach being in the way. But thats good to know, thank you :) x

  13. Sammy
    Sammy August 15, 2012 at 10:24 am #

    Just to let you know, i’ve officially finished my book. Hopefully it won’t be long till its in every book store in the world :) Anyone thats interested in reading the 1st chapter, you will find it at:
    http://evajevaisbecausewecan.blogspot.com/
    Thanks for reading,
    From Sammy x

  14. Jasmine from England
    Jasmine September 11, 2012 at 2:12 am #

    hey there just a little quick message im in same place as you. i have been on steriods for a year now and they cant get me into remission i am only ok when im on a high dose of them but they cant keep me on them as they are not very good to be on plus ive put on like 3 stone since being on them which is awful but if im off the steriods then i would be going about 20+ a day! and i have a 2 year old girl so being on the loo all day isnt good! i am thinking of surgery as its spreading and i dont want it to get any further but im only 20 and its a huge thing as iv always been a paranoid person about the way i look.
    as long as your healthy it shouldnt matter how you look and dont worry your deffo not the only one!!!

    Jasmine from east anglia :) x

    • Sammy
      Sammy September 14, 2012 at 11:56 am #

      Hey Jasmine,
      i can guarantee that if you go to a dietician and write down what foods you eat and control what agrees with your gut and what doesn’t, it will help in the region of 80%
      For instance, i found out that caffinated tea bloated my stomach out to look pregnant, decaf is so much better, and it tastes the same which isn’t a problem :) You’ve just got to take a closer look at the foods you eat.
      Good luck, were not alone, keep your chin up :)
      from Sammy x

  15. Sammy
    Sammy January 10, 2013 at 11:43 am #

    PEOPLE OF THE UC WEBSITE AND THE WORLD… I HAVE SOME FANTASTIC NEWS…

    When i first joined this website, i was suffering just like everyone else with UC, i was prepared to have operations done and have the bag put on the side, anything to get rid of the pain. Well, thank God the doctors delay things. I just started to see a Dietician, she told me to keep a diary of all the foods i eat and write down my bowel reactions to what i have. Long story short, 6 to 8 months went by and i now know that the main thing that really irritates me is caffinated tea and coffee, so now i have decaf, and it tastes just the same, just no horrible reaction.
    Now instead of going 5 to 10 times a day, i go about 1 to 3 times a day and i feel great. I cannot believe the change. At one point, i really thought there was no point in me even living and now i’m so much more out going and so so happy, words cannot explain.
    I just really wanted to say thank you so much for everyones advice and support on this website. I’m actually now looking into researching and studying a course that i stopped taking at university due to my stomach. Its great that i can carry myself on where i left off. I’ll have my life up and running in no time, including the possibility of publishing my book :)
    Check it out it out when you get the chance, find this blog, its:
    http://evajevaisbecausewecan.blogspot.com/
    This includes the first chapter to my biography.

    I hope that all the other UCer’s out there are getting better :)

    2013 is going to be the year to remember

    From Sammy x x x

    2013 is going to be the year to remember

  16. Sammy
    Sammy May 7, 2013 at 9:37 am #

    Hello everyone on the UC website, how are you?
    Just to update you… my stomach is still developing healthy and fine, and i am happy to announce that (fingers crossed) i will be joining a university for a year hopefully in september :)
    I still can’t get over just how much my stomach has improved and how happy i am knowing that i can go further in the world. I feel on top of the world. And its all due to cutting out certain foods and eating all the right ones. Trust me though, i still have a good roast dinner (my favorite) without any bad results, so the cut outs on certain foods and drinks are not all bad, besides it worth it if you want a normal life again :)
    And believe me… if i can do it, so can you ;)
    I’ve updated my blog page, so don’t forget to check it out:
    http://evajevaisbecausewecan.blogspot.com/
    Have a great day x x x

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