Ulcerative Colitis Tips


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Mild UC – Surgery and Uncertainty

Introduction:

Hello!
My name is Ricky, a 28 year old male diagnosed Feb. 2012 with mild proctosigmoiditis.
I am currently living in the UK but heading back home to New Zealand shortly.
Hobbies include playing & composing music, fishing, traveling, camping and having a good time!

My Symptoms:

Loud stomach gurgling every now and then and nothing much else thankfully!

My Colitis Story:

Hi Guys.

I’m going to keep it simple…

I got diagnosed in February 2012 with mild proctosigmoiditis.

Symptoms for 7-8 years before hand – slight discomfort in lower left quadrant every few days.

First flare in may 2007 lasting 2 weeks. In remission until December 2012 (med free and unaware I had UC). In remission since mid Feb.

Since being diagnosed with this awful condition (although I’m a mild case) I have become a nervous wreck and can’t look or plan more than 1 day ahead of myself.

The thing I am most concerned about is will this disease kick my A*$ and get worse?, will I live a normal life in the future? and will I get any extraintestinal manifestations?..

I know nobody can answer these questions and that’s what really pi**es me off the most! Why the hell has this disease got no prognosis or typical course??

leg removed comic

I would rather volunteer to have a leg removed in surgery with no anesthetic than have this for the rest of my life. At least if that happened the pain would be terrible but you’d get over it in a couple of weeks and there’s nothing else that can just crop up out of nowhere like gangrene and PSC!

Someone summed it up nicely for me the other day by saying ” having this disease is like being told someone’s going to try and kill you but you don’t know who and you don’t know when”.. I completely agree!!! That constant fear of the unknown is terrible. It’s frustrating and actually driving me insane. And I’m not kidding.

To me, trying to find answers is like walking around with an object in your hand asking everyone in the world 1 by 1 if they know what the object is because you need a correct answer for the million dollar question on who wants to be a millionaire, to just hear ” Sorry I don’t know?”..

All I want is some clear cut answers and this is where my questions below come into play:

– I would like to know if anyone out here has had elective surgery for mild UC while in remission or relapse? I do not want to take ANY medication as I don’t see the point in ruining my other healthy organs to then one day have to remove my colon anyway. Why prolong it..

elective colon surgery comic

– Can we opt at anytime to get our colon removed regardless of what condition it’s in?

does this seem crazy

-Does this seem crazy to you all or is it a good approach to take?

I have cut all processed food from my diet as well as cut down my weekly alcohol intake to around 2 standard units or so. I eat very healthily and work out often. I am not naive and know that this could only help keep me in remission for a limited amount of time however.

Sorry if this post is upsetting to the ones who have had their colons removed and people with a severe case, trust me I know i’m VERY lucky that I have a mild case but i’m trying to be proactive and get rid of the disease before I actually get worse. I know it’s autoimmune related but i’m certain that if the colon was gone, the immune system would go back to normal.

I think I could live with a bag and yes I know of all the possible complications but at least there’s no uncertainty with relapses and the like. It feels like the old Ricky is dead and there’s this new guy here in his place. He’s tired, angry, scared, frustrated and wants answers. And I’m pretty sure my girlfriend wants her old Ricky back too.

going crazy

Feel free to tell me I’m crazy.

Thanks for reading.

Where I’d Like to be in 1 Year:

Worry free, my old self, happy and free from colitis and all its other associated nightmares.
Colitis Medications:
Not on any medication for my UC, I am going to tackle this the natural way. If that doesn’t work then hasta la vista colon!

written by Ricky

submitted in the Colitis Venting Area



new zealand, proctosigmoiditis

27 Responses to Mild UC – Surgery and Uncertainty

  1. ahmed June 26, 2012 at 7:24 am #

    don’t worry man, and don’t precede the events. you be soon in good health. only try to avoid tension.

  2. sabrina June 26, 2012 at 7:32 am #

    I think…ur crazy lol :) Ive just been recently diagnosed with UC a couple weeks ago with horrible diareaha and pooin blood alot! Its a pain in the butt but id still rather poo out mybum then out my belly, I did start meds tho and they worked in just a couple days and now im symptom free. I know i can flare at any time but its just one more thing to deal with like my period. Lol. My dr told me yesterday, its not the end of the world and ur not gunna die from it (exept rare cases) just manage it and live ur life.

  3. Paul Willoughby June 26, 2012 at 7:41 am #

    Hard question. My case is mild to moderate but I am staying away from surgery for now. It’s a big decision because once your colon is gone, you ain’t gettin’ back. For me, I’m going to have to be much sicker before I go for the surgery. Keep in mind, that if you end up with a bag permanently and have that stoma, there can be complications with it getting infected and such. Also, I would think you would not be able to swim or ever be submersed in water with a stoma….

    Paul

    • Per Vork June 26, 2012 at 8:14 am #

      Paul

      You can swim with a stoma, its not a problem at all.

      “Bathing or swimming: You may take a bath with or without your pouch. You can take a shower or bath with your pouch off. Water will not go into the stoma during a shower or bath. For swimming, you should always wear your pouch. Empty your pouch before getting into the water if you swim. You may want to put waterproof tape strips over the edges of your skin barrier.”

  4. Waz June 26, 2012 at 8:27 am #

    Hi ricky, im 16 and i Had surgery for the j pouch in february 2012. From the short time that has passed since having the surgery there has been a list of problems such as stomach gargling rahes etc but i can honestly say that even though it will take time to recover into a natural poop pattern its worth having the surgery. Eventhough im not 100% better i feel i a have been given a new lease of life after three painfull years. You should deffinatly not be scared of the surgery it nothing to worry about if your tired of living with UC.

    • Ricky June 27, 2012 at 2:09 pm #

      That’s very comforting to here Waz! It’s great to hear stories from people that are glad they had surgery.

      I hope that the future brings you all that you could ever wish for and that you get back to a “normal” diet soon :)

  5. Active UC'er June 26, 2012 at 8:27 am #

    I would say give it some time. It sounds like you are medication free right now? How does UC interfere with your daily life? I wasn’t quite sure. If you are running to the bathroom a million times a day then that is definitely life interfering. If you are going to the bathroom like 3 times a day, then that is an improvement over what would be happening with a stoma or a reconnect surgery. I’m guessing the ostemy bag needs to be emptied multiple times a day (so still the need to find bathrooms) and with the jpouch surgery, I think you end up going to the bathroom about 5 times a day although there is less urgency. I’m not an expert though, I’ve only read up on it.

    As for drugs, I would consider giving the “lighter” drugs a try if you ever need them – like Asacol, Lialda, Colazal (all US terms – sorry) or even the enemas. The side effects of those seem much less likely and much less severe than any side effects of major surgery and a permanently altered digestive system. It’s when you start taking Prednisone, Azathioprine, Infliximab, Humira, etc. that the side effects seem to start being severe. Prednisone still seems like a “light” option to me if you were only prescribed a short dose but I know some people are completely set against it.

    With all that said, I do completely understand your desire to avoid harmful drugs. I am currently fighting shingles while on Remicade, steroids, and colozal. I might be facing surgery anyway and it’s been brought up twice during my appointments so I’ve given it alot of thought. It’s the choice between keep fighting in hopes that I can go on maintenance meds in the near future versus getting off of all of these horrible drugs. I chose to give the “hard stuff” a try. But I honestly do think that you should consider the “light stuff” before having major surgery given the cost trade-offs.

  6. Per Vork June 26, 2012 at 8:33 am #

    Hi Ricky

    Im 34, i have had UC for around 10 years now, i have never been in remission, i have pretty much tried all the medicin there is, diets, nothing has really worked, at my last GI appointment i told my Doctor that he had until Januar 2013 to try and get me in remission if im still not in remission, then he can go ahead a schedule me for a J-Pouch, im so done with this disease, i’ve been a prison in my own house for way too long now, its time to get it done, i have talked to so many people who had the J-Pouch surgery and they all say the same thing, that it changed their life back to normal, no pain, no urgency, its all gone, cured! only down side is that it takes around 9 month to get pass a surgery like this, but people did tell me those 9 month go fast, because you feel so darn good after the surgery.

    Im done waiting for a real cure for this desease, 10 years ago when i was diagnosed, my doctor said they dont know why people develop UC and if i ask again today 10 years later i get the same answer, they dont know why, only that it is genetic.

    Sorry for all the negativity, but UC has definally driven me nuts :)

  7. sc June 26, 2012 at 12:30 pm #

    I would try some yoga, relaxation, hynotherapy, message – anything to manage your anxiety because that only makes UC worse. At the moment your disease is mild and it could stay mild forever. I certainly would not recommend or consider surgery in your case (and I’m not anti surgery at all, I know many who’ve had a great QOL with jpouch and perm ileo and yes you can of course swim, bathe, cliff jump, climb the seven summits with it – all of which has been done by people with ileos btw). My brother was diagnosed with UC (mild) in his 20s. It has stayed mild for 10 years now and though he gets regular flare ups (a few times a year) he just eats a blander diet and gets on the asacol (which he does not normally take). A year after his UC dx he had a massive stroke and something like that really puts this disease in perspective. It does suck, no doubt, but it is not the end of the world. If you act like it is, it will be for you. Good luck to you.

  8. uma June 26, 2012 at 6:08 pm #

    You are crazy. Most UC people live normal lives.And yours is a very mild case. There is so much research going on and a cure might be round the corner. So hang in there and dont do crazy things in a haste.

  9. PeterNZ June 27, 2012 at 1:59 am #

    Cuz,

    The UCers reckon you are crazy mate.

    I’m down here in Auckland and we have a nice little bit of UC going on here too. If you are coming to Auckland, and would like a bit help hooking up with good doctors etc. etc., put up a new post and Adam will email me (cheers Adam).

    I reckon you are dreaming if you think you can walk into a hospital and get a surgeon to remove your bowel after having one very short flare 5 years ago and then another recently. There are reasons I say this, including, but not limited to:

    * All operations carry risk and are not given lightly.

    * The procedure is costly.

    * There are other people (who’s stomach gurgle a lot louder than yours!) who are way ahead of you on the waiting list. You will probably keep getting bounced down the list.

    * There are medicines that can help with this disease and this what a surgeon would consider should be tried first.

    * You don’t mention having had a colonoscopy or a second (or third) opinion.

    * You may never have another flare again anyway.

    * There are other ways to deal with your paranoia/anxiety.

    * Etc. Etc.

    I could of course be completely wrong as they have been trying to snatch mine for years now!

    There are people here who have good lifestyles and live normally whether they take drugs or not. Having colitis/ Crohns just becomes normal. I take the drugs. I live normally. I get sick sometimes (very very sick alas). I get over it. I don’t dwell on it. The thought of something that may never happen again does not dictate how I live my life. This isn’t the end of the world, mate.

    My sister had 1 flare years ago now. She was prescribed 5 ASA (a non-steroidal anti-inflammatory I think) and has been sweet as since. Same with my brother and he moved to Aussie last year and stopped taking the drugs and is sweet.

    So I reckon its early days and not to worry too much about it , mate. She’ll be right.

    Good luck,
    Sweet P

    P.S. I have heard there are “surgery holiday” countries that will do any op you want if you can pay for it whether you need it or not….

    • Ricky June 27, 2012 at 2:01 pm #

      Hey PeterNZ,

      Good to see another Kiwi on here! That’s one thought that goes through my mind… In the UK there is a very short waiting list
      to see good doctors and it’s basically free. You know all too well that NZ is a little behind on the hospital front and this is a concern for the future.

      Glad to hear that your sister and brother are doing ok!

      I did have a colonoscopy which revealed the UC. This was from a top GI specialist so I don’t see the point in a second opinion.. (also confirmed on biopsy).

      And I don’t know about the surgery holidays ay!haha, might go in for colon removal and come out with no arms :)

      Just another thing Pete, are there many good support systems in Auckland?

      • PeterNZ June 28, 2012 at 2:40 pm #

        These are support groups here but I have never contacted them

  10. Dallas June 27, 2012 at 6:52 am #

    Hey Ricky,

    I have proctosigmoiditis as well and luckily it is on the mild side. I currently take lialda and Rowasa Enemas. Somedays I’m ahead and somedays I’m behind, but for the most part I enjoy a relatively normal life disregarding the bathroom time I need when I first wake up. It was a tough pill to swallow when I got diagonosed last summer, but I’m still here and I still have my colon. I do suffer with anxiety as I’m sure all of us do to a point with this disease, and I occassionally have the surgery thoughts run through my head as well. I, like you, think about just knocking it out and going on with my life, but there will be other struggles. You got to remember everyone struggles with something–99% of people don’t get out of this life scot free! Your struggle just happens to be this pain in the ass (pun intended). It’s all in how you look at it. You do have options although some are tougher than others.

    I would suggest trying Rowasa Enemas–they get right to the spot and they don’t have to travel through your entire body to get where they need to go damaging other organs. It sounds like your problem is low, so they may help you get over the hump. Also, try a probiotic–they’ve really helped me.

    My brother in law had severe colitis and eventually he had his entire colon removed. Believe me, watching him go through hell was not easy and it scares me to think I could get that bad. However, since his surgery, he has his life back. He isn’t sick anymore, he can work, and eat whatever he wants with the exception of a few things (nuts, corn). He has been hospitalized twice since getting the bag due to blockages, but on the whole, he is so glad he did it.

    Relax, nothing lasts forever.

  11. Bev June 27, 2012 at 9:43 am #

    Ricky…

    I don’t agree with most of the responses on here…I agree with you!!

    I detest when people say…if you think it’s the end of the world, then it is…and all that other bullshit. It makes those of us who are realists, and who are damned sick and tired of all of the songs and dances, sound like we are somehow ‘weak’ and ‘sad sacks’ and are just feeling sorry for ourselves.

    I hear what you are saying. It seems like this disease totally changes our whole being. We aren’t the same carefree people we used to be. The uncertainty IS terrible…it’s like a family member has gone missing, and you never know what happened to them. No closure…no answers. Wouldn’t that drive anyone around the bend??

    I have thought about surgery so many times as well, but I’ve never had the guts to go through with it. I’m convinced that as soon as I do it, a cure will be found! Just my luck, right? I am in remission right now, I think, thanks to probiotics. I hope it lasts, because this affliction is getting real hard on my husband, too. He’s been great for 13 years, but I think because I’ve changed so much, he’s getting tired of hanging in there…and I can’t blame him for that. I am more cynical at times, have less patience for certain things than I used to, don’t want to do alot of fun things like I used to, and am even sometimes jealous of ‘normal people who aren’t sick, even tho they don’t take care of themselves (I have been an avid exerciser for 30 years, and don’t drink at all). I only hope that our relationship survives this. It really has kicked my ass…no pun…really.

    It’s totally okay to feel how you feel. I’m sick of the UC mind f***ing merry-go-round, too. I am upset that some people on here are calling you crazy, and nuts. You are a realist. Very sane and logical. I’m sure you have your good days, too!

    Cheers,
    Bev:)

    • Ricky June 27, 2012 at 2:06 pm #

      Hi Bev.

      It seems that we may be quite alike! I always use that method of thinking to tell myself i’m not going crazy. It is exactly like having a family member go missing and not having any closure (I would imagine)..

      I too worry about how long my relationship will last now that i’m pre-occupied with this UC thing.

      And I always call myself a realist too! I know things could get a lot worse, I know this could kick my ass, I know what COULD happen. I just want to find a way to try and stop it, to iron out the potential problems before they arise etc.

      And lastly yes, I do have many good days! It’s just the days when I feel hard done by I tend to get upset.

      Thanks :)

      • Bev June 27, 2012 at 9:58 pm #

        Exactly Ricky, exactly!

        Yep, I knew right away that we were on the same page, so to speak. I am actually quite an optimist most of the time, except, for like you said, those days when I feel like…why me? I always get over it, though. I’m too happy for that to last too long.

        That surgery option is always in the back of my head. I wonder sometimes if it is inevitable. I started out with proctitis 13 years ago, and was told it probably wouldn’t get any worse. Well, 13 years later, I now have pancolitis…total colon involvement! What a kick in the short hairs that was/is. The doctors seem to really know nothing about this disease like why and how, and what to do about it, so we’re kind of left hanging, with a million questions and scenarios going through our heads. Sheesh…what a way to live, huh? That’s what I meant by a mind f**k of a disease. You’re just never quite sure what’s going to happen, and when…

        I wish I could say that was exciting! It just ain’t…lol

        Cheers, my friend:)

        • shelly in maine June 28, 2012 at 10:23 am #

          It’s all a crapshoot:-) :-) :-) :-)
          Damned if you do damned if you don’t. A roll of the dice either way…guess I’ll keep battling to keep mine for now…I’ve had it for better or worse for 44 years – uc diagnosed at 15, but clearly as far back as I can recall symptoms so I guess I’m pretty attached! :-) (already gave up gallbladder I’m sure from the remicade… Always risk of surgery and they tell you to get the hell out of the hospitals asap-the longer you stay the more at risk you are! And always important to look around…things could always be worse…surgery is always an option and better for it to be an option versus no choice? Maybe time will improve meds., knowledge, diets/info and research and surgeries…positivity is key….be healthy. :-) shelly

          • Bev June 28, 2012 at 5:35 pm #

            Right on Shelly!!

  12. Rachel June 27, 2012 at 2:38 pm #

    I had my colon removed as an emergancy in march after a horrible flare. Having an ostomy at 23 was the last thing I wanted I thought my life was over bu I can honestly say I’m 100% back to my old self, it feels amazing being healthy and not in pain anymore! If this is an option for you I would defiantly consider it. Good luck!

  13. Catherine June 27, 2012 at 5:05 pm #

    My daughter was happy to let her colon go. She was too sick to function normally with it. She had jpouch surgery last month, and is doing great. She takes zero medications, only poops a couple times a day, and feels she has her life back.

  14. Justin
    Justin June 30, 2012 at 12:08 am #

    Hey man I feel you, I was about to cut my own colon out. But like some of the other.people said just give it.some time. Your probably tired of hearing that haha. Like Bev said try the probiotics they really seem to help. I know you don’t want to hit the prednisone but it helps at least for me but I refuse to take it longer then two months. Everything you said was spot on to what I was feeling too, especially the uncertainty of not having any idea of what’s going to happen or when. And that shit is a mind fuck it changes you.into a different person. Another thing I would say is if your having symptoms try drinking aloe Vera juice or coconut water it really helps with the inflammation and pain. Although it tastes like horse shit. Best of luck buddy I hope things start to get better for you

    • Bev June 30, 2012 at 1:39 pm #

      Mmmm…horse shit…lol…really Justin? Aloe and coconut sound so good. You would think so, anyway!

      Cheers:)

      • Justin
        Justin June 30, 2012 at 11:25 pm #

        Hey Bev! Yes absolute horse shit! Haha the stuff is awful! It did sound good when I bought if but the “tastes great” label was a lie! The sloe juice isn’t too too bad just tastes like blended grass lol. It helps tho!

        • Bev July 4, 2012 at 4:04 pm #

          That’s just like that L-Glutamine shit, Justin…no flavor my UC ass! I bought it and mixed it in water, and it tastes almost lie a colonoscopy prep drink. I shit you not!! LOL

          Mmmmm….NOT!!

  15. Gutless Wonder July 6, 2012 at 4:19 pm #

    Ricky, I’m sorry for you as it sounds as though you are not dealing to well with all the emotional crap that comes with this diagnosis. However you need to put things into perspective here. You have mild procto which is a walk in the park compared to some people’s symptoms. Your maintenance meds may get rid of these symptoms. You may never have a severe flare as long as you live. Only one third of UC patients get the surgery. No surgeon would consider doing the surgery as you don’t need it. Surgery is given to those on an emergency basis or for those who have been suffering for a long time where the usual meds via IV and other havnt worked. Surgery is usually done on those with pan colitis. You don’t fit in to any of these categories.

    Surgery is not what it’s cracked up to be and certainly does NOT mean an end to your problems. After several years of a continuos moderate attack (7.5 years and by moderate I mean bucket loads of blood loss each day and 30-50 bowel motions) I moved to a severe phase and then accuse. I was hallucinating by the time I got to the hospital, was in final stages of dehydration and malnutrition, multiple organ failure and I had toxic megacolon and septic shock. I was kept alive for 2 weeks before my colon finally ruptured. I woke up with 2 bags, one for my stoma and one for my rectum. I then suffered acute and massive blood clots in both lungs and once again barely survived this. 7 months later I went in for the j pouch creation and 3 months later my reversal surgery. The first 2 surgeries (especially the j pouch) is incredibly painful. My pouch has now failed. I have chronic pouchitis, I still go the toilet 20-40 times per day, am constantly dehydrated because I have no colon to absorb water, I’m lacking in every nutrient possible because I can’t absorb anything. I need to avoid lots of foods because the cause blockages. I need to be admitted in to hospital roughly every 2 months to stretch out my strictures because my intestines are closing up from scar tissue. This is just for starters.

    Once you go down that path you cannot go back. While most pouch surgeries do succeed a fair few fail. Those going in for emergency surgery have a far less chance of total success and many remove the pouch at some point and end up with a permanent ileostomy (this is what I will be doing). Others who go in for a planned surgery have a far more success rate. However anything can go wrong. My friend went in for a planned surgery, everything was fine beforehand but during or after surgery he caught MRSI and a flesh eating bacteria, his liver failed and he needed a transplant .

    I’m not trying to freak you out. Im just trying to say that yes it sucks you have UC but I know loads of people with it who it barely effects and from the sounds of your symptoms you fit in this category. That may well change in the future but life is too short to worry about the what if’s. Be happy that you have what would probably equate to 1/10 on the severity list.

    I personally wish I’d had an option for the surgery before I almost lost my life but I would only have considered doing it in the year prior as I had no quality of life anymore and no medication worked.

  16. Crohn August 15, 2012 at 9:26 am #

    Two things.

    Right now you don’t have symptoms but with surgery you will definitely have few issues that you will have to live with for your life. Also there is not 100% certainity in any diagnosis. It could be crohns and you will have to still deal with it after surgery. I have seen post where someone removed colon and after few years found out that she has crohns and now small bowel is affected. Consider your self lucky and if you don’t have symptoms, don’t take any medication. If you develop symptoms start with Asacol and enamas. I have colitis but it is crohns colitis.

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