I’m so over this colon.

by on Monday, February 15, 2010 13:42
This entry is filed under: Chronic Disease

This is not me in this picture. But it was so ridiculous I couldn't pass it up.

I’m so over this colon. Its like a pair of jeans that I’ve had forever that I refuse to get rid of. They were great and useful, but now they have a ton of holes in them. But for some reason, I’m hesitant to throw them out. Granted throwing out my favorite denim is a tad different than removing my colon, but you know, same principal. With all the problems and discomfort that I get from this dang thing, you’d think that I’d be more than jumping at the bit to get rid of it. But I’m not. I’m not at all. I’m more than pumped about the possibility of getting rid of it and feeling healthy and maybe getting part of my life back, but the road to get there just seems so daunting. It feels endless. Not only does it feel endless but the road has a damn colostomy bag involved with it. The road is gross. The road is filled with potential problems and questions and uncertainty.

Can you tell I like metaphors?

I have been pondering this surgery for a few weeks now and in that time I have talked to a few nurses and asked a few people at various stages in their surgeries a barrage of questions. I’m pretty sure my last Q an A session ended with “Did you wake up with a butt tube?”  So I’m not afraid to ask questions, but am I a little afraid of some of the answers? Affirmative.

Every time my stomach grumbles, I think about chopping old the ‘ol colon. Every time I sit on the toilet. Every time I second guess eating something. Every time I worry about the location of a bathroom. Every time I am humiliated in one way or another by this disease….I know I need this surgery.

Much like many people out there who are in my diseased bowel shoes, the surgery sounds like a god send. It sounds like an answer to all of our problems, aside from one thing. The one thing that makes me and I’m sure others second guess the WHOLE thing. The one thing that makes me consider living like this for the rest of my life because I can’t even fathom it. You know what I’m talking about. I swear I could just not even say it and we’d all be on the same damn page. But for those of you who are reading this with your head cocked to the side in confusion….its the colostomy bag. Yea, that thing. That super gross thing that makes us all feel disgusting and subhuman. It terrifies me. Its ugly, its stuck to you, and its def a damper for intimacy. I mean seriously, I know people get around it, but how? How do you even think about sex with that thing attached to you.

Yea I said it.

I think I’d probably swear off sex for the entirety of stage one of my surgeries. I cannot imagine living like that permanently.

Yea, I said that too.

I’m not one for sugar coating. I still don’t know what I’ll do just yet. You know, through all of this, since the very beginning of diagnosis I have told myself it can’t get any worse. And without fail, every single time, it has gotten worse. I have had the most ridiculous UC journey, that if it wasn’t me, I might point and laugh. (Eh maybe not, but I would probably talk about me behind my back). It almost seems fitting that I go out with a bang. That this redonkulous ride called UC would end with the removal of a large organ and the attachment of a colostomy bag. Everyday, slowly but surely, I’m getting over this…but I’m not gonna like it.

P.S.  I’ve found the overwhelming urge to write about this crap probably more than usual. So I’m gonna do Jpouch double time and update every so often here and more frequently over here:  http://BloodPoopTears.wordpress.com/

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15 Responses to “I’m so over this colon.”

  1. avatar

    Roland Lemus says:

    February 19th, 2010 at 5:10 am

    I can totally relate to this fear of the colostomy bag. Well, I am a 46 year male that had UC issues since 1999, started out like most stories, slowly and then BAM. I was hospitalized twice for a week with one time being so bad I almost bought it. That thing about being stubborn and male, well, I am the poster child for that, but the bleeding, the steriods, the hospitals over 7 years humbled me to the point of exhaustion. The last straw was ealry part 2008. I had another Colonoctomy, mispelled but I don’t care, anyway, they found a growth that was gratefully benign but that really scared me, pollups are on thing, but growths? Also, I told a work friend, that I WOULD NEVER have a colonostmy bag, EVER. After this event though, I started to have another flare up that was so bad, it landed me in the hospital again. So, I had my gastro Dr. talk to me and he stated you have two roads since NOTHING is working for you now and you are even responding to steriods, you have remicade, or we need to remove your colon, period. Your inflamation level is at 123%, I treat folks on anti imflammatory medicine at 5%. You do the math, you can see you are in need of a drastic change. He told me about remicade and even gave me a book about a person who had the surgery so I could get perspective on how it is living without a large intestine. For my life deicisons, it always seems that I have days to decide major decisions in my life, that’s another blog, but to make it clear, I researched the Remicade and got no real good data that it worked well. It is like Chemo and it is tough on the body and there are no real long term fixes there. So, I decided on the operation to get a J Pouch. I was lucky enough to have an excellent surgeon. I asked him the normal questions, well the most important one. Will this impact my sex life? Will I have a colonostmy bag? and for how long? He stated yes you will for about 2 months, and then we will reconstruct you and you will have at least a year or so of recovery before you can start doing things as normal, but I will be careful. I stated how can this affect my sex life? He stated, well ALL of the nerves that go to your genital area will be moved aside so I can do the operation. He stated he will be gentle and not try to impact anything. I told him ok, will everything still work? He stated, it should but I am not going to tell, there MAY be some complications, this is a 5 hour operation, very complex and your body will have to heal for awhile. I sighed and I looked at the bag of liquid steriods going into my body and I stated, o.k., let’s do this….long pause. I looked at my lady and she said I support whatever decision you make, but the remicade doesn’t sound promising, and I stated I know. I am so tired of being sick. To shorten this blog, the operation went well, and the time with colonostmy bag was grosse, it was, no sugar coating, but I had my lady do the changes, I was a big baby about it, and it hurt like hell when they kept changing the bag because the acidity from the fluids was burning my skin, the surgeon had a powder that eased that pain, and I was on some nice pain killers. The hospital stay was a long one because I had some dehydration complications too. That is another long story. My point here is that I regained my life back. I am no longer a UC prisoner. I can eat HOT WINGS! I can eat spicy food to some degree and not be in such pain. I am OFF the anti imflammatory drugs, I am on lomodol, but that is nothing compared to the steriods that made me gain 60 pounds! I have a whole new look at life and my gastro dr put it to me the best way, Roland, you forgot what it feels like just to feel good. I know some J Pouch folks have complications, it happens, but I tell you, I am sooo glad I made this decision, the colonostmy bag for 2 months flew by and before I knew it, it was over. I am not going to say it was an easy road, nope it has had its painful moments. It’s a journey that I am glad is pretty much over and IF I had to make the decisions to do this again, I would, and if you read the long version of this, you would be saying, really? Yes, really. Take care.

    Roland

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    Jackie Z. Reply:

    Hey Roland,
    Thanks for the story. Every time I get someone who tells me that its better on the other side I feel better about doing it. I’ll have to have the bag for 9 months though, which, is what my big problem is. I just can’t seem to get over that part. But I will. I think. There are so many people with complications, but most of them all say they would still do it. To me, that means its got to be worth it. And with how the universe works, my UC has gotten extra super bad since I made the decision to go through with the surgery. Perhaps its a sign of a good decision.

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    Lizz Reply:

    Hey, girl. I had the bag for 8 mo. It was no picnic, but I did it, and could do it again…and you can too!

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    Jackie Z. Reply:

    I know I can do it…I have to! Its just a daunting thing to think about. But So many people have done it before me, and ive had such good advice, I feel like I’m as best prepared as I can be.

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    Terry Reply:

    Jackie, the bags are the pits at first but you’ll get through it. I had mine for 9 months and learned to manage it pretty well and to conceal it. The first week or so, I was mortified at the mess. As a boy and later as an adult and father, I would lose my appetite if blood or bowels were mentioned while eating. Boy – did I get over THAT! But as I look back at 10 months after the takedown, I smile at myself that I did it and got through it! You can too, as you have already acknowledged. Hang in there. Life will get better and you will grow from this. Terry

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  2. avatar

    ML says:

    February 19th, 2010 at 9:19 pm

    Hey there. I jumped over to your blog and look forward to reading more. Posted some comments to your postings there.

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  3. avatar

    Megan says:

    February 20th, 2010 at 6:46 pm

    Jackie, well, as the wife of Mark who had a temp ileo, I can tell you my experience as an outsider with the bag in our intimate life. All I know is that he was healthy for the first time in year, and that was the most attractive thing. For years he was sick and it was really hard to maintain intimacy while he is having accidents, sick, etc….But that bag let him look great (he no longer had the death circles under his eyes), he felt great (he had his libido back), and all those things together made the bag go away. Plus, once you are intimately comfortably in a trusting relationship something like the bag is really no dirtier or grosser than some of things we humans do for “pleasure” . He would just empy the bag before and then we’d go from there, it never once bothered me or caused isses because it was the thing making him HEALTHY!

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    dianne Reply:

    I just want to tell all of you that you are wonderful!! This has been a lonely journey and as I sit here reading with tears streaming down my face I realize that I am not as alone as I thought. This blog has been a tremendous help for me emotionally. I have to remember that i now live a new “reality” and need to learn to accept the new me. I wish one of you guys were actual friends because although some of my friends say they understand..the little comments that are made make me realize that they don’t…”maybe it’s the rice” It’s not their fault ,I realize that, but I do feel very alone. Thanks so much, again everyone!!!

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    Jackie Z. Reply:

    Dianne,
    This website was a god send for me. It gave me so much great info and I’ve “internet net” some amazing people who have helped me more than anything. I haven’t even had my first surgery yet (24 days) and I feel very informed and that I have an awesome support system from those I’ve met here. My friends and family are the same, I know they try very hard, but they don’t get it, and thats not their fault. But it does make it really hard to communicate with them. Hang out on this site for a while and youll meet some great people who will be more than happy to help you!

    -JZ

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  4. avatar

    Dianne says:

    March 1st, 2010 at 2:05 pm

    Jackie, Thank you…Thank you…Thank you! You have no idea how this is helping me. I will definitely continue with this site and be grateful for it every day!! Dianne

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  5. avatar

    Shrimp40 says:

    March 5th, 2010 at 7:52 pm

    Hi.
    I had my 1st major op at 16, where they removed all my large bowel, n gave me a bag. I had it a few months n hated it, so just after my 17th I went bac in2 hosp 2 hav the bag removed n a j-pouch in it’s place. All was going well, then bout 22yrs later I started 2 get ill again. I had 2 make a choice n fast. My hub really didn’t want me 2 do it, but he knew deep down I wud get worse if I didn’t. So at the age of 39 I had my 3rd major op n have the bag bac, n comin on 4 3yrs now n I always say Happy Birthday 2 it. We also enjoy a sex life, cause he knows a bag won’t change the person who u r, it just makes u that more special.

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  6. avatar

    Cynthia C. says:

    March 11th, 2010 at 10:46 am

    Hello There,
    I’m so, so happy i went through with surgery. i opted out of choosing a Jpouch for now, because i was so sick and weak when i went to the hospital i just wanted to get my colon out and my health back. i had surgery in january and am finally feeling pretty good. i can eat basically whatever i want and even went out last night for a girls night out to do a wine tasting. suffering with colitis is so horrendous. it’s hard for me to believe people suffer for so long, avoiding surgery. i do understand how scary it all can seem, but truly, it is NOTHING compared to the suffering of colitis. once surgery is over with, you instantly feel better, because that deseased colon is gone! the bag is annoying, but as soon as i feel that way, i remember how awful it was to feel so sick everyday and then the annoyance of the bag disappears. i feel good too knowing i can go in at any point and get the jpouch surgery. my husband is not concerned about the bag during intimate times. he’s just so happy i’m healthy again and smiling! i wish you the best of luck. Don’t be too worried! You can do it!
    Best, Cindy

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  7. avatar

    SpecialOp says:

    May 18th, 2010 at 6:08 pm

    I just completed my 2nd surgery, (was supposed to be a 3 part surgery sequence but Dr. Deemed my tissues health to be good enough to skip the 3rd part)…

    I had the bag for 6mo, it wasn’t that bad, I’m currently in the hospital following that 2nd surgery and still remembering the good old days of having a bag… Right now I’m recovering so I feel that the bag was the greener side right now. I’m sure I’ll change my mind in 6 more months. So all in all bag itch goes away…don’t be a wimp. The bag is socially acceptable if you just own it and let others know it doesn’t bother you that much that you have it. I got my current girlfriend with it, she is the only person I’m self-conscience about it with but she assured me many many times before/after sex that it doesn’t/didn’t bother her. I came increasingly more of a believer as time went on and really think she is something special for seeing past it cause god knows we, the people with the bags, can’t.

    Good luck…bag’s pretty sweet if you think about the +20x craps a day and then not crapping for 6months was beautiful! If i have to go back to a bag some day you won’t find a guy that’s too upset about it here!

    Oh and my stamina in sports went up substantially after the 1st surgery during my bag time. Like I said I didn’t care that I had a bag…sports..school…who cares just wear 2 tee shirts or a sweatshirt and you are good to go. I bought a underarmor like shirt and cut it so it would hold the bag up to my body…thus invisible through shirts when needed.

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  8. avatar

    Alison Bryson says:

    February 9th, 2012 at 1:45 pm

    Just read your e-mail.feel exactly the same way.I,ve partied hard but so have the rest of my friends.Is it my fault?.Cant get my head around a pouch (first option) or a bag come to that. i,m tired of the colon complaints but not sure i want to throw it away.i,ve been in remission 4 yrs at imes isnt that something to consider? i feel too young for surgery/bags etc eve though im 43.I have 6yr old and 5 yr old.need to get to get my head around it as futere prospects r cancerous.the smell of poo. feeling indequate makes me feel old xx ps ran the maraton lat yr in 4 hours so i,m sure i can coame up witha better solution xx

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