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Stoma location--do you have much of a choice?

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Posted 12/15/2007 9:56 PM (GMT 0)
Hi all,

I have been reading/doing some research on where an ileostomy stoma would typically stick out from--and I have read many different things! (Based on posts and various websites I have read)

People that I read about who seem to have gotten their ileostomy a while ago (10-20 years) seem to have their stoma right across from or a few centimeters above the belly button. More recent ostomates have said that their stoma is a few centimeters below their belly button.

I wonder why this trend exists? (Or am I wrong and this is not a trend?) Just to go along with the changes in fashion (low-waisted pants are what people are wearing nowadays...?? :)

Since I would never wear any high-waisted pants, I was hoping I could have my stoma below my belly button (so it would be under my belt line and I could still wear the kinds of pants I want to!!

Could you tell me, did you have much of a choice as to where your stoma was placed?

Thanks for any input!! :-) :-)
Posted 12/16/2007 12:06 AM (GMT 0)
Years ago when they were marking me for stoma placement, one of the most important factors was where the natural waist line occurred so that the placement would be below that area. I remember sitting up in the hospital bed and bending forward to be sure that it was placed below that area. I am very short waisted anyway.
Posted 12/16/2007 1:43 AM (GMT 0)
Mine was done 32 years ago. It's located about 3 inches to the right and 3 inches below my belly button.

You should have an appt with a stoma nurse before your surgery. He/she will take into account the clothes you wear, creases in your skin when you stand, sit, etc and will mark the best place for your stoma. You should even ask for some sample bags to try out beforehand if you can so you can make sure the spot that's marked works for you.

Good luck.
Posted 12/16/2007 10:06 PM (GMT 0)
Hi,

I got my ileostomy in 06 and had an appt for marking the site where my stoma would go. My stoma nurse had me lying down, standing up and sitting down to see where was most suitable, then she marked my tummy and i had to make sure i could see it clearly for easy changing when i got my bag. This appt was done on the friday and i went into hospital on the sunday, the black dot the nurse marked on me was there so my surgeon had a guide.
Posted 12/16/2007 10:19 PM (GMT 0)
This is a topic my husband & I discussed last night. He has only been diagnosed Nov 2 07 and no response whatsoever to Lialda, rowasa and prednisone. If in the end he has a stoma: i was reading that as men's underpants are often lower than the belly button: it is as important as for women to try and get a position for a stoma agreed upon ahead of time. i was thrilled when this question was asked as i did not know if you had a choice. I think the idea of meeting a stoma nurse AHEAD of time is perfect. i will put this in my Hints to remember book if the time comes...
Thanks to you all
Tuesday sees us at a new physician and new hospital and a good GI center... So we are limping top tuesday as really he is bedridden with this disease: in pain and with all the effects of prednisone: so desperately thin in an already thin man..... it is awful.
Chloe : a wife of a newly diagnosed 62 year old man....
Posted 12/17/2007 6:21 AM (GMT 0)
Thanks so much to you all, peggy, Shaz, Gillcom and Chloe, for the great information. It is very comforting to know that people like the stoma nurses you talked about really take the time and effort to make sure that our stoma will affect our lives as little as possible!

Shaz, I think that is great that I can test out wearing a bag before I even would have to. I am supposed to get an ileostomy, but know I am putting it off (the need is not immediate, but the surgeons have said--and they are right--the sooner the better). I seriously think I might order some stuff just to "test it out" on me at home. Maybe if I sit around with it on and get used to the idea/feeling, I will not be so scared about having the procedure done. Or, people will just think I am nuts. :-) :-)

Take care everyone. This site truly is a comfort to me.

Erin
Posted 12/17/2007 6:02 PM (GMT 0)
I didn't have a choice, because my surgery was an emergency. But, they did a pretty good job of putting my stoma in a good place anyway. Mine is a couple inches over and a couple inches down from my belly button. I don't have to wear high wasited pants. Woo!
Posted 3/21/2008 8:46 AM (GMT 0)
I know exactly what your going through. I was diagnosed with UC on March 5, 2007 so I've been living with it for a year (diagnosed at age 30). Before this, I was perfectly healthy, wasn't on any medicines and never been to the doctor since I was 7 years old.

What is missed in the posts with people with UC is they often don't mention the severity of their UC when diagnosed. Mine was pancolitis which meant the whole colon was involved from the start. My background is in Engineering so I initially wanted to find a cause for the disease. Naturally I went to food for causing it, but later I found this wasn't the case. People must understand that your immune system can just one day decide to attack an organ and it will do everything it can to kill it!!! I could eat the "good" foods and "bad" ones and the result was the same...it all passed through with a constant dull pain and I was going over 15+ times a day despite the large doses of meds I was on to try to induce remission.

At first I was on 20mg of Prednisone and 12 pills a day of Asacol. After 6 months and no improvement, my GI specialist upped my prednisone to 40mg a day. My family doctor questioned my GI doctor's treatment at month 9 into the ordeal saying he should be changing my treatment strategies. He scheduled a bone density test and I found out I had osteoporosis from the prednisone after 9 months of being on it. So I would say to everyone if taking prednisone....get a bone density test after being on prednisone for 3 or more months. You can get on Actonel to hold your density until your done with your surgeries (or off prednisone later in life) and not lose further bone mass. Steroid induced osteoporosis is totally preventable, but doctors seem to overlook this fact in younger patients.

Getting osteoporosis at age 31 was enough for me to stop seeing my local GI doctor in Akron and I went to the Cleveland Clinic for J-Pouch surgery. I was somehow able to go to work and only missed 20 days up to this point. Thank god I work for the government and had a ton of sick and vacation time saved up and excellent healthcare and disability benefits. But my condition got progressively worse as my body got use to the Asacol and Prednisone as the year went on. I began weaning myself off the prednisone on my own after that diagnoses...tapering of course.

I'm in the process of doing the J-Pouch surgery which I was preparing for 3 months into the UC ordeal. I was to have the 2 stage surgery but my organs were so messed up from the year of being on Prednisone. This is what they don't tell you in the side effects sheet of taking any steroids for over a month. Prednisone actually turns your internal organ tissues into the consistency of butter and they cannot hold stitches or staples. Because of this, my first surgery on Feb 12 2008, the surgeon could only remove the colon and stop. He couldn't make the pouch out of the small intestine. I'm now 5 weeks post-op and feel great-almost normal. I have an end ileostomy and it is working fine. It only took a few times to the bathroom and a few wafer changes to get the hang of the bag. No big deal at all. I use the hollister 2 piece system and the wafers last a week for me.

The pain from the first surgery was two fold. The first two weeks I had mostly pain from the incision which was controlled with pain medicine. The following three weeks I experienced a mild pain in my abdomen - didn't need pain medicine. I'm guessing it is from all the work they did on the inside...almost like the pain you experience from a bruise but it involves the entire abdomen. It mainly hurts when you touch it or from the weight of the full bag. I'm off from work for a total of 8 weeks for this surgery...mainly because of the pain and low energy level I'm guessing. Now I can feel my energy returning.

The ileostomy was no big deal for me because I know it's temporary (had a year of reading about it) and if the J-Pouch fails, I know I could live with a permanent one. 5 months from now they should do stage 2 surgery - create the J-pouch from the small intestine (off prednisone so the organs will heal and hold staples by then), and then 3 months later reverse the ileostomy.

I would tell everyone who gets UC, first make sure they don't have Crohns to do the surgery if the Asacol/Lialda and Prednisone combo doesn't work after 4 months. Imuran and Remicade were not for me and their side effects seemed worse than UC to me. I read about the cancer risk and being almost 32 now, I don't know what would happen after being on that junk for 30-40 years from now or what it will do to the rest of my body (to my currently healthy organs). Why sacrifice the rest of your body for your defective colon that you can live without?

Also, the only thing my GI doctor in Akron told me that sealed the deal for J-pouch surgery to me for UC was...even if you find the magic pill or natural food/pill combo that puts you into remission...your colon on the cellular level is still inflamed. It never heals completely (always inflamed even when your in remission)...this is why your risk of colon cancer goes up every year because these cells (being constantly inflamed) have a high chance of mutation as time goes on. So you can take that medicine for 30-40 years and you develop colon cancer later on and they remove the colon then anyway. I would rather avoid the yo-yo effect between flare and remission, off the 20 pills a day, and preserve the rest of my body. Who cares if I have to go to the bathroom 5 times a day. At least you can hold it (up to an hour) and now I have the bag...that's about the same amount of times I need to pee anyway! The j-pouch surgery was a no-brainer for me.

Five days after surgery I could tell the pain from UC was gone...just pain from the incision. I'm off all meds now except Actonel (two pills once a month) for my osteoporosis and I feel "normal" again. I cannot even tell that the colon is gone. The surgery is the cure for UC. Don't be afraid of it and go to a hospital that specializes in J-Pouch surgeries like the Cleveland Clinic. To me it was worth it already and I still have two surgeries to go. I wish I did this 6 months earlier.

Hope this helps you and others.
Posted 3/21/2008 12:13 PM (GMT 0)
GISGuy- I absolutely love your line "Why sacrifice the rest of your body for your defective colon that you can live without?" What GOOD sense! Anyway- about your stoma location- I met with a stoma nurse at my pre-ops, will meet with one again to do the whole routine over again. It took about an hour to get a suitable location, & those stoma nurses really know what they're doing! I think nowadays it's mandatory to meet a stoma nurse & mark the stoma location prior to surgery, unless of course it's an emergency procedure.

Posted 3/21/2008 2:19 PM (GMT 0)
i dont wear high wasted pants, but my stoma is just a little below my belly button. I was fitted by an ostomy nurse as well, and do to the bends and curves of my body,and the type of jeans i wore this seemed to be the best place ( I took Ash's advice and brought my favorite pair of jeans on my marking date). I wear mostly lower jeans, but my stoma sits above the waist on my pants. So thats my suggestion, bring something that most resembles what youd wear day to day, it was very helpful!
Posted 3/21/2008 7:09 PM (GMT 0)
Thanks,

My stoma location for my ileostomy is about 2 inches to the right (my right) and one inch down from my belly button. At the Cleveland Clinic they actually tattoo the location on you. They won't tell you this until you go for the pre-op appointment. They actually tattoo you...I thought they were joking at first!!! The ET nurse took out a black ink bottle and placed a dime sized black ink drop at the location and then they took 3 needles and poked it into the the ink and my skin-resulting in three little black dots in a triangular pattern. It hurt a little while they were doing it but that's what they do...no permanent marker dot which I was expecting.

Anyway, my waist line is about 2 inches below the stoma location because I always wore my pants lower and my gut hangs over. I'm 6'2" and weigh 175 pounds when healty. I lost 20 pounds after being diagnosed with UC but gained it back before the first surgery. I'm at 170 lbs currently and only lost 10 pounds after my stage 1 surgery.

I've only been wearing sweat pants and let the bag hang out on the outside since my belly is still a little sore and I'm currently off work and recovering at home. This weekend will be the first time I'll be wearing my relaxed fit jeans and regular clothes since I'll be visiting family for Easter and the Cleveland Clinic on Monday. I'm sure I'll figure it out and if it is bad to have the waste line of my pants cross over the bag or if I'll have to wear my pants and belt above the stoma. Anyone else have experience with this???

My ileostomy stoma seems to fit the "ideal" standards. It's round, sticks out about an inch, and I have no skin folds or creases near it. The stoma nurses told me 4 days between wafer/bag changes but I've read on here that people can go 1 to 2 weeks before wafer changes. So that's what I did and I can get about 1 week + a day or two from the hollister flat extended wear wafers. I use their two piece system and I get the bags that have the waterproof filter. These are fairly new on the market and have the white window. Before these, I guess people needed to cover the opening with tape while swimming or bathing or the filters would fail to work once they got wet. These bag filters seem to last about 2 days for me before they start to balloon up and I have to start burping them. So I just change the bags every two days by snapping a new one on the wafer. They also have a drain out the bottom with the "lock N roll" system that rolls up and stays closed because of velcro...so no clip to mess around with. I also use paste to seal the area between the stoma and the area where I cut the wafer to fit around the stoma. I can never get it to follow the edge of my stoma perfectly so the paste acts as a caulking filling any gaps between the edge of the wafer and the stoma. After 5 weeks from surgery, my stoma has stopped shrinking. It's between 1 3/8" and 1 1/4" in diameter. So this is why I use the paste...I cut the diameter assuming 1 3/8" diameter. Eventually I'll order the pre-cut ones when I use these ones up. It seems pretty easy since I've read what people had to use in the past. I also use the beige bags. Hospitals seem to love the transparent kind so they can see the color of the output and the stoma. I changed over to beige ones as soon as I got home. Much better than seeing the stuff in the bag.

Hope this helps.
Posted 3/23/2008 3:52 PM (GMT 0)
Hi all and Happy Easter!

[GISGuy--thanks for your story. It is always nice to read about others' successes. :) Also, is it GIS as in geogrpahic mapping systems? I only ask because my major in college was geosciences, though now I teach science... :)]

I have not been posting, just lurking, for awhile now...if you recall, I had 2 opinions about me getting my ileostomy--the first doc said get in the next year or so, the other one said I can wait about 4 years if I want to (so I can have kids first--I am 27.)

Anyway, so I was kind of in the "it is in the future, so don't worry about it now" mindset again--until a few days ago when I realized this one stricture I have needs dialated again (I start feeling pretty bad when it is closing up...)

I called the surgeon, who has dialated this stricture for me 8 times at least before, to schedule the procedure--and I had to schedule it over our school's spring break since I have no sick days left..! The surgeon reminded me that it may not be possible to dialate it again (the tissue become just too destroyed after awhile) but he would try. If its not possible, I will be looking at ileostomy surgery shortly after that. I am kind of feeling like I just got hit with the reality bus, because up to this point, the ileostomy was something i could OPT for, but now--in the near future--it might be something i HAVE to do (no choice).

I KNOW that you guys are all right in that I will feel better after and wish I had done it sooner. I have Crohn's, but just in my colon, so it would be pretty much a cure for me. What i am SCARED of is the possibility that I will not be able to have kids due to scar tissue, tipped uterus, etc. One surgeon said that they can leave in the rectum for a few years until I have kids, but it would need to come out eventually...but I cannot imagine having anothe rbig surgery after this one....but I also want to be able to have kids (and the chance of passing on Crohn's is only 5-8%, pretty low thank goodness!)

I also keep going back and forth with feeling almost excited that I will finally be normal again, and then sometimes I have this out of body experience where I am looking at myself as if I am someone else and thinking "...I can't believe it has come to this."

I will keep you all posted--my stricture surgery is on April 16.

****Also, thanks to everyone who posts on this site, especially the regular posters. I feel so much more comfortable with the idea of getting an ileostomy that now than I did a year ago--mainly because you all helped put a face to the type of people who live with them--and I realized that they are Normal, Happy, Healthy people (and I will be one of them soon)! You all do more good than you will ever know.*******

Erin
Posted 3/25/2008 4:54 PM (GMT 0)
Hi ConsideringABag,

Yes, the GIS is for Geographic Information Systems. I work for ODOT (state routes, U.S. routes and Interstate routes) and I'm their District 4 GIS coordinator (in NE Ohio). It's really a fun job, but my background and degrees are in Civil Engineering, which goes hand and hand with their GIS. I get to make maps, play with GPS equipment and do engineering stuff all day and get paid for it. I couldn't ask for anything better.

My advice is get the surgery otherwise your just wasting a part of your life that you can never get back. I wish I did my surgery 6 months earlier even though I was in misery for only a very long year after my UC diagnoses. Don't screw around with the disease, if surgery will cure or improve your quality of life...do it!!! Get off the meds, they are killing you too, just a little more slower and can affect your offspring. I did the surgery just to get off the meds...the elimination of the colon cancer risk 30 to 40 years down the road was just a bonus.

If they leave the rectum, that's fine, that's where I'm at currently and chances for complications to your other organs are extremely low. If they leave the rectum, you'll have a small controlled BM of mucus every 2 to 3 days...no urgency. This was a funny fact I discovered two days in the hospital after surgery. Remember, most of the people you read about on here have or had complications, the others with successful surgeries are living their lives.

I'll let you in on a secret that my surgeon told me yesterday at my post-op visit. Don't let this scare you out of the surgery, but this is what you could expect pain wise and time off of work wise. My surgery was not done lapriscopically due to the one year effects of prednisone on my other organs (it turns them into the consistency of butter so they cannot hold staples or stitches), so I got the 10" incision in my belly and they just removed the colon and stopped. However, the pain from the incision was gone in two weeks with the help of the pain medicine. I even noticed 5 days after surgery that the pain I had from UC was gone and I just had pain from the incision, or so I thought. That's how quickly the major pain decreases after surgery.

After the pain from the incision is gone, a new much more milder pain takes over and lasts up to 6 months. This is the pain in the entire abdomen and it's from all of the work they did on the inside removing the colon even though on the outside everything looks normal. The best I can describe it is it's like the pain from a large bruise. I can sit and walk and sleep on my sides and not feel any pain (4 to 5 weeks post-op). But any pressure on the abdomen makes it sore (any poking, tight wastebands, or any type of pressure on it). It's not enough for pain medicine, just more of an nuisance...far less than living with the chronic pain from UC. You'll also experience some itching around the stoma and incision for the first 6 weeks. You cannot even tell your colon is out, other than being thirsty more often than before and being symptom free.

For me, the ileostomy was a secondary issue to all of this and really not a big deal to me since I had a year to prepare for it and it will be for 6 to 9 months. I spent my time recovering researching the internet to find the "best" bag system that took as little amount of time in my life to deal with it. After researching, I prefer the Hollister 2-piece system. My wafers last a week and I change the bags every 2 to 3 days because their waterproof filters stop working and they begin to balloon up during the day and night. After doing this ileo thing for 6 weeks, I'm now a pro at it and I found the right combination of accessories, bags and wafers that work very well for me. If the J-pouch fails down the road, I know I can live with an ileostomy without any problems.

I recommend finding a good stoma nurse. One ET nurse I had in the Cleveland Clinic had a stoma for 17 years and was very helpful to me. She was the one who marked (tattooed...yes tattooed...no permanent marker) the stoma location prior to surgery. In the hospital, you may see several different stoma nurses and each one of them will tell you different things/systems to use (probably the system or company they learned from while in nursing school)...so you'll wind up experimenting on your own when you get out.

I got a lot of free samples because every ostomy supply company will be calling you when they find out you have an ostomy to get your business. I would recommend that you take full advantage of them!!!

I'll be off work a total of 8 weeks with this colon removal surgery. Surgery #2 being scheduled in 5 months (actual J-Pouch one) from now, and the amount of time I'll be off for that one is another 8 weeks and expect the same amount of pain.

For your work, I would check to see if they have disability benefits. I'm covered for a year (they pay 70% of my salary for the first 13 weeks, 50% of my salary for the next 13 weeks, then they pay nothing afterwards). They must also have FMLA (not just for babies but for chronic diseases also), which by Federal Law, they have to hold your position for a year even though they are not required to pay you. Check into this before the surgery, it was a God send for me!!!

Take care and good luck!

Jim
Posted 3/27/2008 11:35 PM (GMT 0)
Jim,

Thanks for the response--your insight and encouragement are much appreciated!! :) Your job sounds very cool. One of the things my Crohn's has made me miss is the time I used to spend outdoors hiking and stuff like that...!

your quote:
"My advice is get the surgery otherwise your just wasting a part of your life that you can never get back. I wish I did my surgery 6 months earlier even though I was in misery for only a very long year after my UC diagnoses. Don't screw around with the disease, if surgery will cure or improve your quality of life...do it!!!"

...is EXACTLY the kind of thing I need to hear!!!

I think I am going to have everything removed--colon and rectum--since they are both diseased and I don't want to face another big surgery down the road.. My ostomy will also be permanant...But you are right--why I am polluting my entire body to save one horrible, nasty, inflamed colon that I can live without?!?

I hope your j-pouch surgery goes well and that you heal quickly!!!

(Oh, also, since I am a teacher, we have great disability benefits--I get up to 10 weeks off with full pay! (I am only taking 6) Nice!!)

Erin
Posted 3/28/2008 3:48 AM (GMT 0)
Erin,

Thanks for the comments. The surgery option for you should be a no-brainer.

6 weeks post-op is probably good enough to go back to work. I'm just at that point now and feel great. I can walk around and get up and down steps without any pain and walk a little (probably 10 minutes now before having to rest). I get tired rather quickly still, so I guess it takes a while for the energy levels to come back. I slept almost 14 hours a day for the first 4 weeks after surgery. I guess I was catching up on my year of being up in the bathroom 4 to 5 times a night. I finally feel well rested now when I'm awake. No more feeling like a zombie.

Anyway, if your interested the bills for my surgery are starting to come in. The hospital tried to bill the insurance for almost $52,000 for my colon removal surgery and 4 days in the hospital at the Cleveland Clinic. My insurance got it down to $19,150 and I just need to come up with $630. So don't let the bills bother you. Only paying $630 for a $52,000 surgery is definitely worth it.

It was funny because there was a line item in there that said "colon removal" $7,210. I'm guessing that is what the surgeon was getting paid for the 4 hour surgery...my portion of that was $18.26. That was the best $18.26 I ever spent.

Take care and good luck.

Jim
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