Long update on me and several questions/need advice!

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Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/18/2008 1:48 PM (GMT -6)   
Ok so its been a while since I posted so forgive the length!

So I'm back at home at last! After 3 weeks in the hospital and another 4 and a half at my parent's place (my poor poor fiance) we are back at our apartment safely 100 miles away, lol. I still have one very malodorous jackson pratt drain in my rear from the original abscess that sent me reeling into the hospital for two and half weeks. However its showing great signs of improvement, especially now that I'm officially off prednisone! There are some downsides however: I've picked up a lovely yeast infection according to my WOCN nurse. She gave me a script for some powder that will treat the skin (which is so itchy I've scratched until I've bled in my sleep). I've applied it once and so far it gave me relief for about a day, oi. Anyway, I'm also trying those new moldable wafers by convatec, and so far I'm not really impressed. Sure its nice not to have to cut, but I've had two leaks in the past week within 12 to 24 hours of its application. It may be my own doing however, seeing as I still warm the wafer by hand after its applied; I also might have ordered a size to large, seeing as I can only mold the tiniest fraction of an inch around the circle before the hole becomes to big for my stoma. I still have pain in my rear from the drain, and in my abdomen, but its much improved in the last two weeks.

All this aside, I was able to attend an Obama rally the other day. I must say it was amazing being able to stand/sit in line for over two hours and not have a panic attack because there wasn't a bathroom in sight! I also was able to sit through the whole rally without having to sprint to the can, which was AWESOME. Hehe, its the little things right? I do have some questions though, now that I'm more mobile and active:

1) How do you guys position your seatbelts so they don't choke your stoma from being able to output? No matter what car I'm in, the seatbelt always seems to sit right on it. In my own car I just have a rag that I place near the bag and it props the belt up...but I'm at a loss as to what I should do in other cars.

2) My wedding is coming up and I'm schedule for a massage on our honeymoon. Has anyone figured out a way to lie on their stomach completely and not feel uncomfortable? Especially for a massage!

3) This kind of goes with number 2. Sleeping at night seems like a big deal these days. After laying on propped up on my back in the hospital I can finally sleep on my side, and very carefully (with lots of pillows) partially on my stomach. However all of my leaks have happened at night. Right now I'm trying to stop this by using the bathroom everytime I wake up (about 3-4 a night) and eating something like bread or marshmellows when I'm done using the bathroom (to keep the bile and acidity down aka: "the green stuff" that appears in the morning when you haven't eaten all night). This stuff seems to eat my wafer alive, and causes the leaks at night. I can't describe how frustrating that is, but this system will only work until school and my job starts up. Anyone have any suggestions on sleeping positions or how to keep the watery acid stuff out of my bag at night?

ps: I know my signature is out of date but I don't feel like rewriting this after changing it! :p
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/18/2008 7:17 PM (GMT -6)   

Are you using and Eakin Seal with the mouldable?  I found that the two, together, helped prevent leaks the best.  What size mouldable wafer did you purchase?  I used the small and was able to open it a little bigger than my stoma, put on the Eakin(sized to my stoma size, so it would be smaller than the opening), and apply.  Within minutes, the part that I moulded back "turtlenecked" my stoma to the perfect size.   

As far as sleeping on your stomach, go for it as long as it doesn't hurt.  I don't need pillows anymore, but that took time.  When I go to the beach and lie on my stomach, I use and extra beach towel to make some extra room for my stoma.  You could do the same for your massage...

As for your seatbelt question, I usually make that portion go below my appliance or if I am not driving, I hold the bottom to give it a little slack.

I hope your leaks stop soon!!


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 4/18/2008 8:42 PM (GMT -6)   
heyhey.  the seatbelt--i found some plastic dealie at an automotove store.  basically it clamps onto the belt at whatever location you choose.  i have it clamped so that there's lots of slack on the part of the belt that goes across the stoma.  it cost $4.99 for two i think.  works great.  even with that, i've noticed i rarely even wear my belt since i had the surgery....but that's just me.
 
--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 4/19/2008 12:23 AM (GMT -6)   
Carlow said...
1) How do you guys position your seatbelts so they don't choke your stoma from being able to output? No matter what car I'm in, the seatbelt always seems to sit right on it. In my own car I just have a rag that I place near the bag and it props the belt up...but I'm at a loss as to what I should do in other cars.
Get a clothespeg and clip it to the top of the belt where it slides into the side of the car. That way you can clip it so it stays loose enough not to bother your stoma but the belt will still be able to protect you if you're in an accident.
 
Remember to always wear your seatbelt - it's much easier to fix a stoma than it is, a dead body!

I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Cruiser
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/20/2008 7:18 PM (GMT -6)   
I used to just move the seatbelt under my stoma, sometimes it would move back up, just you just need to loosen it a bit and re ajust it. With the massage, ask if they have a pregnancy table, it's a table with a whole in it, that they use on pregnant women for the belly to lay in. That way your stoma won't get flatenned and you will feel a lot more comfortable.

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/21/2008 12:43 PM (GMT -6)   
Hey guys,

As usual thanks for the input! Cruiser, I really like the sound of that pregnancy table...I'm sure the spa will be able to accommodate. The seatbelt thing still bothers me, but I guess I'll search for something that will prop it up...or just carry a clothes peg with me at all times, lol. I found out today that I've been using the wrong wafer for my stoma, so I've gone an re-ordered the right one according to the helpful people at conva-tec. Apparently my frequent leaks at night were due to using a wafer not designed to handle liquid stool, oops. Anyhoo, all is well except since the rally I went to my abdomen has been very sore. I think I strained myself by standing/sitting in line for so long. I hope it goes away soon, I'm slightly worried that it might have irritated my healing/draining abscess or made a new one...but its been 4 days with no fever or nausea and it only hurts when I use the muscles in my abdomen <shrug>. In the meantime I'm trying to lift as little as possible and stay off my feet, what a life. :p
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Coumadin (6mg daily, 9mg two days out of the week)


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 4/21/2008 5:44 PM (GMT -6)   
Carlow, I read in an Ostomy Brochure, that you should wear the seatbelt either below your stoma or over the top.

As for the leaking, I did have trouble with the moldable Convatec too. I thought it was a fantastic invention, but it definately molded too far up my stoma. My stoma sticks up about a 1/2 inch, but I still went with a light convexity, pre-cut flange. It works wonderfully - no more leaks! Coloplast makes a terrific 1 piece or two piece called Sensura. You should contact Coloplast and get a free sample. Do you know your stoma size? If you do, you can order pre-cut ones and never have to worry about cutting. With the light convexity, it will push the stoma count a bit more and the drainage will go more into the bag instead of sitting near your stoma. This will help prevent the leaks, especially at night. Belts help with leakage problems too.

lp
Regular Member


Date Joined Nov 2007
Total Posts : 29
   Posted 4/21/2008 7:39 PM (GMT -6)   
I absolutely LOVE spa treatments and massages. Have regular appointments. Sauna, steam, wraps, hot tubs, the works ! I have never used a pregnancy table - you could try this - it works for me, anyway. Lie on your stomach but bend your knee on the side of your ostomy - if the stoma is on the right side of your navel , bend your right knee. Put a little more weight on your left hip, and this creates a little space for the pouch. This does not work with a full pouch, you need to empty before the masseuse gets to work....this also works for laying on the beach. It might work for you.

As far as seat belts, they haven't been an issue, I just wear the seat belt.

I stopped sleeping on my stomach after my surgery, and have embraced side sleeping.......which was essential for both pregnancies because I was HUGE. I can't recall the last time I had a leak at night... maybe 10 years ago or more? I rarely have leaks during the day either - but I've had nearly 40 years of experience, its pretty automatic.

Really, it does get better and eventually you adapt and develop strategies that work for you. Don't be afraid to try new things and ask questions- there are a lot of caring folks here who are eager to help with good suggestions.
UC diagnosed 1964
Ileostomy 1969


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2008 8:12 PM (GMT -6)   
i haven't even noticed a problem with the seat belt. But, as a suggestion, there is this thing, called the "tiddy bear" (yes that's is real name) i saw it on ellen, and it is sort of a cushion thing for your seatbelt, it might help you.
I sleep on my stomach and lay on my stomach in the tanning bed, like they said though, that won't work with a full bag. At night, i sleep on a pad, i sewed a sheet on to the top of it, and it feels just like the bed, only it's waterproof and it makes me feel secure so i don't worry about leaks

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 4/23/2008 9:07 AM (GMT -6)   
I spend a lot of time in the car, commuting back and forth to work and the seatbelt has definately been a problem. No matter what I do it seems to end up directly on the stoma. I wouldn't dare not wear a seatbelt. I am anxious to try Shaz's solution. It's so simple it's perfect. Comfort but still the protection of the seat belt.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 5/2/2008 2:56 PM (GMT -6)   
Ok,

So I went and bought a whole bunch of clothespins and they work wonders for the seat belt issue! No more blocked stoma! However with every small victory something has to go wrong to accompany it. While the yeast infection looks better, I still get some itchies throughout the day which are not so bad...but at night I find myself really trying not scratch after having to get up to empty my bag. I'm still getting up every three or four hours to prevent a leak b/c I'm still using the stomahesive convatec wafers. The durahesive wafers are here and I tried two samples with disastrous results yesterday. It seems my stoma is just a shade to big for the smaller size I ordered and it has also reduced in height on two sides. So, the convexity and small size has led to the wafer "turtlenecking" up and over my stoma it seems... causing it to leak. For now its back to the stomahesives, hopefully the pharmacy will take my unopened box back and I can switch them out quickly as I'm down to two wafers. Anyone need some durahesive convex moldables in the smallest size? lol. Oh, and this jp drain is still hanging out, driving me crazy w/o any help from my ostomy issues. Who knows when its coming out. Soon I hope. Finally, my fiance bought me an I-pillared leg pillow the other, its great for side sleepers who hate using bed pillows to prop their leg up at night. I highly recommend them to anyone who has this problem!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Coumadin (6mg daily, 9mg two days out of the week)

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