Wednesday, March 18, 2009

My ostomy

My big surgery in December was prompted by a tumor growing in my rectum and threatening to block the passage of stool. When the doctor removed the tumor he had to remove the rest of my rectum too. The rectum normally sits between the end of the colon and the anus, acting as a warehouse for poop.

With the rectum removed I was left with a short anal stump and the loose end of the colon was redirected to a hole in my abdominal wall (called a stoma). There the stool exits and is collected in a plastic bag taped to my belly. Without a rectum or anus to limit movement through the stoma, gas and stool exit whenever the colon becomes active. That can happen at any time of day or night but is most likely after starting to eat.


My ostomy bag is a two-piece Hollister New Image system. It has an adhesive flange which I tape to my belly and a hole in the center for the stoma to protrude through. On top of that flange I place a special opaque plastic bag to collect stool. It has a charcoal filter to let gasses vent without odor and a clipped opening to allow collected stool to be emptied into a toilet. I replace the bag every two days for freshness and change the flange about once a week to clean the skin underneath and restore adhesion.


My stoma is up to two inches long, depending on whether my colon is in a relaxed or contracted state. It sits upon a crowned region of my belly due to the rearrangement of intestines beneath. So the whole appliance, with the crown, stoma, bag, and contents included protrudes two or three inches compared to the other side of my belly.


I check on the bare stoma when I change a bag or remove the flange and clean the whole area. It's a soft, pink tube that weeps moisture and bleeds easily if touched. It does not have nerves to feel touch but does give a sensation of pressure as stool passes.

It's hard for me to accept having this new body part and associated medical appliance constantly on my body. I'm not eager to go shirtless in front of anybody – no more beaches, pools, or bare backed work in the sun. The lack of control, feeling, and muffling means that I can let out a big fart sound at any time without warning – quiet meeting rooms make me anxious. The appliance takes more time to dry or change after a shower, so it's impossible to jump in for a quick shower.

The protrusion of the stoma makes me uncomfortable trying to lay on my belly in bed. It's not that the stoma hurts from the weight, but I worry that it will be harmed or get stuck trying to pass something out. Likewise, sexual relations are more inhibited. First, I don't feel very sexy with this big bandage-looking thing on my belly. Second, the flap of the bag hangs down right into the area where business gets done. I haven't found a comfortable way to fasten it out of the way. And third, the stoma and any contents of the bag make it uncomfortable to lie belly to belly with another person.

The biggest discouragement to me now is that: the ostomy interferes with intimacy and affection. The second biggest annoyance is with clothing. Now, in the winter, I can cover up the appearance of the appliance with layers of heavy clothes. But still it sometimes looks like I have something hidden under my shirt or that I have a strikingly large beer belly in comparison to my otherwise thin frame. This problem is likely to get worse as the weather warms.

My strategy for now is to get more comfortable with my own body and worry less about how it appears. But I am a person who likes to dress sharp in public, so having half my wardrobe not function and appearing less fit than I am is embarrassing.

I don't want to complain too much. Having the ostomy saves me from the poor function I had before the surgery: unpredictable bowel movements up to twenty times a day, pain, and an impending blockage. I feel lucky that I haven't had to endure worse medical augmentation. And I look forward to taking advantage of the greater freedom for travel and activities.

32 comments:

Kristin Knipp said...

Hi,

Just wanted to offer my support. I'm 33, and have had my ostomy since I was 15.

Check out www.uoaa.org You're not alone.

Best,
Kristin

Emily said...

I have a friend who am I starting to become closer to who has an ostomy. I like to think that it wouldn't bother me in intimate situations, but I feel he being self-conscious might make him feel self-consious as well. He hasn't told girls in the past about it (we're both now 26) but when they start to become more serious and he tells them they freak out and that's the end of it. I believe (I haven't had the guts to ask) that he has had it since late grade school/middle school. I just don't want him to be afraid that having an ostomy will make me not want to date him. How can I make him feel more confident? Also, if things don't work out, how can I assure him it isn't because of the ostomy?

Rick Wagner said...

Emily,

I can think of a couple things you could do to make the situation more comfortable:

One, you could ask about the ostomy in a casual situation. Simple questions like how long he's had it, what it feels like, and whether he swims with it. The kind of questions you'd ask of someone with a cast or leg brace. That way he'll know that you're aware of it and it will feel less foreign to you.

Second, when things get intimate you can focus on other areas and pretty much ignore the ostomy. You can go ahead and touch him, kiss him, and admire the rest of his physique. If you treat the ostomy as casually a birthmark or scar then you should both be able to mostly forget about it.

Jam said...

I think you are very brave and am impressed by your openness in this blog. You are an inspiration.

Emily said...

Thank you so much for your advice. He's had it since he was in first grade, so I think he's fairly comfortable with it in most situations. He even still plays hockey with it! I've let him know it doesn't bother me, but I ask him a lot of questions like what food he can eat...he has has a pretty good sense of humor about it in general. He said he had to keep in decent shape because of it, and I told him I should really work out more. He said he doesn't work out, and when I asked him what he does to keep his stomach toned he said, "Oh...I bike, play hockey, walk...and having no large intestine helps." I about died...I found it really attractive that he could joke about it a little. Turns out he has absolutely no large intestine and only 3/4 of his small intestine. He's so sweet...any more advice? =P

Anonymous said...

I just wanted to say thanks for posting your experiences. I was googling for colostomy information merely out of curiosity when I found your site. Thanks for your candidness and for the education, and I hope the rest of your life progresses smoothly. Best of luck to you.

Anonymous said...

I work at a medical supply store that sells ostomy supplies. I had a vague idea of what this procedure was, but reading your short entry kinda put things into perspective for me. I could have never imagined how inconvenient this could be. As a future nurse, I thank you.

Anonymous said...

Hi,

Thank you for sharing. I am 36 and have a permanent ileostomy since last year. I am dealing with the same types of issues regarding intimacy and clothing. About a month ago I started wearing the bag horizontally using a Phoenix ostomy belt. I also bought a Better Life ostomy belt, which is similar. I was worried that wearing it horizontally would shorten the time between appliance changes but that has not been the case. In fact I just had a week where I probably could have gone 10 days without changing the flange, better than wearing it vertically for me. It virtually eliminates the crinkling sounds from the bag and (to me) looks much better unclothed. It also helps support the bag when very full. Emptying while sitting on the toilet is a bit more difficult but not much and definitely not anything to dissuade me from wearing it. Might be worth a try for you.

Best regards,
George

elphias said...

in just a few days, im going to have a similar procedure done, as i also have rectal cancer, and to be truthfull, im terrified, of loosing body parts, of this ileostomy bag im going to have, and im just completely freaked right the heck out.

i haven't the foggiest on how to deal with this, and it hasen't even happend yet... i have enough trouble dealing with my port, they say you should check it twice a week by touching it, i touched mine once about 2 and a half months ago, got sick to my tummy, vomited. and sence then i will not touch it...i go to my chemo oncology nurse every 4 weeks to have the heprin lock changed, and the port inspected, other than that... i haven't seen my chest in over 2 months, how am i supposed to deal with this as well? v.v

Rick Wagner said...

Elphias,

Sorry to hear about your anxiety.

I haven't had much issue with feeling my port, but I think everybody has their own vulnerabilities. The part I do hate is the taste of saline when the port gets flushed. I take the anti-anxiety drug Ativan and use numbing cream before any procedure that might involve it.

For a while I was also on the long-term anti-anxiety drug Paxil. That was useful to me when I was on a harsh chemotherapy plus radiation.

I find that caring for an ostomy isn't as bad as more invasive things a person might have to do like giving themselves injections. The ostomy is external and doesn't have a sense of touch. So to me it's on par with changing a diaper, which is icky but not revolting.

You should be aware that it takes time to get used to having an ostomy. I've had new ostomies three times now. The first couple months are messy, frustrating, tiring, and filled with resentment. But it does get better! So if you have trouble at the start, hang in there. After six or twelve months you'll be a pro.

Anonymous said...

Thank you so much for posting your story! I am training to be a CNA, and will most likely be caring for an elderly person who has gone through this procedure- this helps me understand what they may be going through-You sound like a great guy!
Wishing you the best,
Erica

Anonymous said...

I had this done In UCL for Crones it first they cut out about 20" of my intestines but I had problems after surgery where they had joined the intestines back togather it leaked and after a few days my tummy was full with Poo

I contracted peritonitis and had a wound of some 12" X 10" puls the Stoma, I have a reversal op bokked for the 2nd of Nov 2009 as I guess I am one of the luckey ones...even with having the last 9 worst months of my life :(

Eric said...

I'm 33 and I got an emergency colostomy a little over a month ago now. In my case it is temporary (my colon was perforated when I was in an accident) and will be reversed in June, but just a bit of advice on the bags - I am using one piece bags from Hollister - #88300 - and I vastly prefer them to the two piece systems - they don't protruded as much either. They have a built in filter as well.

Second, this is not viable for me as I am not long term, but folks with permanent stomas can eventually use irrigation systems, and from what my ostomy nurse told me, once they have a routine set can go from 24 to 48 hours without output, and wear a cap over the stoma the rest of the time. You may want to see if that is something you can eventually use. I had asked about it but my nurse said they only recommend it after the stoma is at least six months old.

Eric said...

dear god I forgot it's 2010 now huh? this post is older than I thought... oh well!

Scott said...

Hi there,


I was diagnosed with ulcerative colitis in August of 2009, at the age of 17. Very rough, my sickness caused the end of a great relationship I had. I had surgery in mid November of 2009, a temporary ileostomy. In between that time, I was admitted to the hospital seven times, put on and taken off Asacol, given up to a 65mg dose (I think, might be a little too high) of prednisone, and two remicade infusions. Nothing seemed to work. Not to mention that I am in my senior year of high school and had to drop out and be put on a home schooling program for the remainder of the year. A year that I will never get to relive. So now, here I am, almost May of 2010, and I still have the ostomy bag because my doctor wanted me to wait 7 months before doing the next surgery. At first, having the bag was very frustrating, but after a month or two things seemed to mellow out. Now, in anxiety of awaiting my second (and most likely final) surgery, I begin to feel frustrated again. I can tell that my mother feels my frustration because I ask her so many questions about what is happening and what is going to happen. My only main concern is the reason why my surgeon is putting off the surgery for so long. Reading your story really fills me with joy and hope that my surgery may be as successful as yours was. My family is so supportive of me, and even though they try to give me answers, there are still so many questions I have that remain unanswered. My only plea is that I'm a 17-year-young adult who has ambitions and aspirations for a better and brighter future. If you would like to get in touch with me, then please do via Facebook.

http://www.facebook.com/profile.php?id=766614829&ref=profile

Micheal said...

Hi Rick, I've had a stoma since December 2008 aged 37, around the same time as yours. I have Crohn's Disease and after having had the disease for 22 years with many cycles of remission and exacerbations with it's excruciating pain, bleeding, strictures, fistulas, fissures and blockages. After a couple of inevitable operations to remove diseased parts of the bowel I finally ran out of Colon and required a ileostomy and I have lived with it now for almost two years. I know all about the feelings of anxiety you talk about, for the first 6 months I wouldn't even go out for fear of a leakage in the local supermarket. I've had many problems with the flange and barrier ring (I also use the Hollister stuff)affixing firmly to the area around the stoma because, unlike yours. mine doesn't stick out very far and on occasion is concave this means I sometimes get gaps that the output can leak through. I know what your going through and whist I to for the most part am happy that I don't have the problems I had with the Crohn's like having to go to the toilet 12 to 16 times a day and getting a red raw putt from continual wiping, I do wish I just had a normal sit of pipes like most people. Of course there is also the ever-present fear that the Crohn's will re-occur in my small intestine and I'll have many of the same problems again leading to yet another operation. Anyway, best wishes and try not to let things get you down to much.

Anonymous said...

wow! Rick- my friend and i were talking about colostomy bags, i googled and found your blog. this is something i've never thought about. thank you for educating me on the subject. you must be an incredible guy! your strength and courage is amazing. you will always be in thoughts. May only good things come your way.Take care. .......patti s

Anonymous said...

Hey Man ! Hope you are well I am undergoing the same situation !

God bless !

gforce said...

I'm 51, my girl is 52 and she's just recovering from colon cancer and will be living with a bag for a while. She's still in shock about the entire thing. She's a truly beautiful woman and a knockout in a bikini and she's coming to terms with the fact that that's going to be a thing of the past. I'm just glad to have here with me still and told her it doesn't matter. I can get used to it. Talking her into the idea is going to take some doing. Thanks for posting this. What I've been telling her is that the most important thing is that I have her in my life still and that we'll make adjustments.

Tom said...

I've had my ostomy since 2001, mine is placed just below my beltline, so is a little easier to hide. They have a procedure now that places the bag inside of your body thru the same opening you have now and has a small tube you can pull out when you need to evacuate the contents.It can be covered with a small 3 inch skin colored waterproof band aid. Good luck. And think of it this way, at least we don't have to sit on a dirty toilet at the roadside gas station..

Anonymous said...

I am facing the same thing and I have an extremely active life. I am thinking I am better off dead than to be unable to do anything i did before. Life just sucks :(

Anonymous said...

I have had a colostomy bag for nearly 2 years now. It doesn't stop me from doing anything at all (except wear a bikini). I swim - in all types of water, dance, look after my young kids, fly (way less painful than before when my tummy used to swell up so much), eat what ever I like. There is no reason to stop doing most of your activities on a permanent basis...the first couple of months after surgery you may be a bit slow but there is nothing that will stop you for long. I use closed bags with adhesive (no flange/clips/belts or anything). If you are lucky, you may be able to irrigate which makes your bowel movements "predictable" as well.

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AILYN TORREFIEL said...

i remember this kind of sick we have a pasient 2 months ago he died,i am the one who take care grave sakripisyo magpalit ng bag,super kawawa din ang my ganitong sakit..

Anonymous said...

Wow. I just had my colostomy about 3 weeks ago due to acute diverticulitis and a perforation of the colon. Never in my life have I experienced the pain this has brought to my life. I am trying to cope with it day-by-day. The upside is that it will be reversed in 3-4 months...thanks be to God. It's great to be alive!!

Anonymous said...

A close family friend had bowel cancer and I wanted to understand the changes he has gone through to give support etc. Your blog is so honest and informative. I wish you all the very best xx

Anonymous said...

Hi My name is Kevin and I had a complete procto-colectomy in 1984 when 26 years old. I had ulcerative colitis starting with the removal of 2 polyps when I was 5 years old. My doctor told me that the disease stunted my growth (I am 6'2" and 230 pounds, but come from a very large family). I knew the location of every public restroom in Southern CA. and some discrete public areas if needed. I went through the same issues most people with colostomies, mainly how will the other sex react. After a 2 year hiatus, I starting dating again and found it was a non-issue. I'm now 55 and the father of 4 sons. My advice is be open and honest at the appropriate time. I found most people look at you with a slightly heroic frame of mind. Don't let it hold you back, you will probably be surprised.

Rick Ealno said...

Very detailed and informative post.. Thank you. I am planning to take colostomy surgery at CSCS , Sydney. I am dreading the entire process.

Ransi Plick said...
This comment has been removed by the author.
Ransi Plick said...

Simply a difficult phase of life for anyone. But it is not that difficult, be calm and determined and all your problems will be over. If you are having any problem in wearing cloths in post Stoma life, you can simply use the Ostomy Lingerie as they are specially designed for this purpose. Hope so that you find them helpful.

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