many issues - where do i start? a bit over-whelmed at times

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mrlamb
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/5/2011 12:12 PM (GMT -6)   
smurf

Hi all
i have read a few posts here on some specific issues and really appreciate everyones input.

I dont know really where to start with this but i guess i will start at the beginning.
I had emergency Colon resection and Hartman procedure in early May 2011 after my sigmoid colon perforated due to Diverticulitis complicated by Ulcerative Colitis.

I had been relatively symptom free on the UC for most of the 20 years since i was diagnosed. None of the flare ups were even close to the original onset and easily controlled by short doses of Prednisone.

my problems today are mainly a result of a poorly designed Stoma.
It is less than flush and because i have extra weight - there is a crease right at the horizontal point of the stoma.
Needless to say, even with crease packing and convex flanges, i still have leaks which cause a LOT of skin irritation.
Due to the cost, I refuse to change my setup more than 2x week unless i have a leak beyond the barrier (which has only happened twice since surgery)

Another issue i have is the material of the barrier seems to disintegrate from the stool or blood discharge so it doesnt matter how close i cut the stoma opening, it always expands.

I use Hollister products right now as they seem to be the best but i get skin irritation from the barrier adhesive (not the boundary tape).
I tried Convatec but they have the mold-able openings. While they do not cause the skin irritation the Hollister does, the mold-able portion seems to unfold back over the stoma opening which causes severe leakage.

a major concern i have is that the stoma is stenosing (growing closed). I have had it dialated by the surgeon twice (to be able to the colonscopy as it was too small for the scope to enter). I have attempted to dialate it myself with a gloved/lubricated finger but generally cant get past my first knuckle of my baby finger. Ingeniously, I considered my options, and went to a sex toy store and bought a (very small) butt Plug (a bit of irony there somewhere) and the shape of it with KY jelly seems to do the trick of keeping the stoma some-what dialated, and bleeding like a stuck pig, but not as 'much' of a concern. However, it still weighs heavy on my thoughts of returning to work.

a recent colonoscopy shows the upper area from the stoma is disease free and the rectal stump shows signs of UC but they are microscopic and only seen in the biopsies (so, much less prevalent than pre-surgery where they were visible to the eye).
I am hoping to have the Colostomy reversed but with it being elective surgery, and the fact that i work on a cruise ship for 4-6 months at a time, I think it wont be reversed until the new year at earliest.

anyway, i am not sure what I have written here but i do have lots of concerns.

1. flush/retracted stoma causes lots of discomfort due to poor fitting barriers.
2. denudded skin around the stoma that does not heal no matter how careful i am at change time.
3. stenosing stoma - i literally have to dialate this at least 1x month to keep it from growing over. Plus i am on permanent Stool softeners.
4. concern of not being a candidate for reversal due to UC still showing in microscopic biopsies. (I see the reversal surgeon on monday Sept 12 to know better) This is a Quality of Life issue for me. I would rather have a risk of recurrence for the next 20 years and live without the Problematic Colostomy Bag than live the way i do today.
5. concern for my job. I have a fit for duty letter submitted to my employer's medical department but have been waiting almost 3 weeks for a response. They originally rescinded my job offer 3 1/2 years ago due to the fact that i even have UC but i was able to convince them (with my GP's help) it was a non-issue but now they know it is (was?) an issue so my decline me to return to work (with or without the colostomy bag)

does anyone have any experience with any of these issues that can help me find some positive from it all?
it can be very depressing and i often fear the easist solution is to let my life insurance look after my debts and make an exit.

48 year old Single Canadian male
UC 20 years - mostly symptom free
30lbs over-weight
scared by the unknown of my medical future.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/5/2011 3:48 PM (GMT -6)   
Welcome to the forum, mrlamb. What a hard few months you've had -- how scary to have emergency surgery and then have to deal w/the bag and all these problems when you were doing well before.

Your last sentence is very troubling -- have you seen a mental health person? Do you have support from family and/or friends? You've been through a serious trauma that has upended your whole life. You need help right now. Things can get a whole lot better. The positive is that you're still alive, and life can be good again -- really. You took a big step writing a long post here, that says to me that you are not wanting to take the "easiest solution."

Some folks find it helpful to get some antidepressants too -- as well as the stress, surgery can mess with your chemistry.

I have an ileostomy, not a colostomy, but here are my thoughts on some of the practical issues:


Do you have a stoma nurse? Regarding the first three issues, it seems like you need the help of a good nurse.

I think you should try some other products. A lot of people on this list have not liked hollister products, not sure why you think they are necessarily the best. Convatec makes wafers that aren't moldable, and there's also coloplast and some smaller companies. All of them will send you free samples, so you don't have to worry about wearing them for half a week if they aren't working.

Have you tried an eakin seal around the opening? It's a sticky ring that can protect the skin around your stoma -- it is a little like the moldable part of the moldable wafers, so maybe it wouldn't work, but maybe it would... they make slim ones too.

You might also like sure seal rings, which are sticky plastic that goes around the wafer and can keep a leak from spilling out.

I don't think I understand the surgery you had well enough to understand #4. I know that a lot of people w/UC have their whole colon and most of their rectum taken out, and then the cells lining the rectum are scraped out, so they can have the j pouch reversal surgery..... it sounds like what you're saying is that the docs are favoring keeping your remaining colon and rectum over making a reversal possible. Certainly there are people w/bad UC who don't have to have a bag -- bad UC is the reason a lot of folks have surgery. I just don't understand why the surgery wouldn't be able to be reversed.

Did a colorectal surgeon do your surgery? Or was it just whoever was in the ER? Maybe you need to find a good CR surgeon to redo your stoma, if you're going to have it for a while.

I don't know what the laws are in Canada regarding disabilities and work.....

The butt plug was funny, creative, and most ironic!

I'm sure others will be along with more information and support.

Hang in.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

mrlamb
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/5/2011 5:46 PM (GMT -6)   
Hi again and thank you for your response

the last line is not necessarily my every waking thought - but i would be lying if i said it wasnt crossing my mind.
I dont want to check out - I am trying to be positively optimistic about all the problems becoming non-issues - but not knowing, my mind tends to go to the extreme of the worst case scenario and i dont want to live that way!
I just have so many issues on the table right now, i need them to be dealt with, one by one, so they are no so over-whelming.

when i speak of reversal, i mean to have the colostomy bag removed and the colon reattached to my anal stump (terminology?). They only removed my sigmoid colon (13 inches) so i still have my colon (at the anus) which is however many inches long. and the majority of my large intestine above the sigmoid colon. The idea is to reconnect the two pieces back together and have everything operate as normal before the surgery (minus the 13 inches of colon).

the part that i am told that might be of concern is the anal stump portion still has signs (albeit microscopic) of UC and the surgeon isnt sure if it should/can be reconnected (even though it is 100x less than what it was pre-surgery)

and yes, if i am going to have a permanent stoma, i will certainly ask for it to re-created. But my mind will not let me think i will have it permanently. my QOL outlook is dependent on the stoma removal. If the surgeons i see here will not do the reversal, i will find someone in USA, South America or Europe and PAY them to remove the stoma and reconnect the colon to the anal cavity and take my chances on it becoming problematic again in the next 20 years.

this surgery was done in Toronto, 250miles from home, so the ET is not easily accessible but i have finally located a ET close enough to visit and will be making an appointment to see them soon.
I used eakin seals on the flat barriers but due to the growing over of the stoma, i changed to convex and the eakin seal didnt work as well. In fact, when it is heated to body temperature, it thins out and i found it often spreading and covering the stoma.

Right now, I use coloplast sticks to fill the gap. Stomahesive powder on the skin sprayed over with cavalin spray.
this is comfortable about 24 hours until things start to break down (like the barrier itself) and start eating away at the skin around the flush/restracted stoma.

in any case - i am really suffering with comfort most of the time and when i am not, i am worrying about the stoma growing shut or not being able to return to work or... or .... or ....

one thing at a time, i know this, but after having this weigh on me every day is getting old quick.

again, thank you for your response.
i would not have taken the time and divulged or meandered in my writing as much if i didnt see the support that is here already from reading the other forum threads.

being a recovering drug addict for over 23 years in a 12 step program, i know how important it is to share the stuff that is bothering us and to get help and support from those who have experienced it.
thank you!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/5/2011 8:04 PM (GMT -6)   
If you have uc you can probably have a jpouch but they shouldn't have left anything that can still have uc. I know you don't want to change a lot but your skin will never heal if it has ouput on it all the time. I think really your only good solution is having the stoma redone. Good luck

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/5/2011 8:06 PM (GMT -6)   
If you have uc you can probably have a jpouch but they shouldn't have left anything that can still have uc. I know you don't want to change a lot but your skin will never heal if it has ouput on it all the time. I think really your only good solution is having the stoma redone. Good luck

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/5/2011 8:49 PM (GMT -6)   
You should talk with your surgeon about a jpouch. That surgery would involve removing the entire colon and rectum and attaching the jpouch, formed with the small intestine, to the anus. Jpouch surgery would eliminate UC coming back and would give you the normal type of bowel function, although frequency is higher (but without urgency).

Sue

mrlamb
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/5/2011 9:03 PM (GMT -6)   
Hi

I dont have a J-pouch.
I had a colon resection and Hartmann Procedure which just removed the defective section and left a 'stump' in the anal cavity.
see this graphic: http://www.myhealthyfeeling.com/wp-content/uploads/2011/04/colostomy-reversal.jpg
or this one: http://79.170.44.138/stomawise.co.uk/wp-content/uploads/2010/10/heartmans.jpg
the reversal is the rejoining of the two remaining pieces of intestine. as described here:
http://www.myhealthyfeeling.com/colostomy-reversal-and-surgery/

My goal is to have the stoma removed and hartmann reversal completed instead of a stoma recreation surgery.

I guess the J-pouch is an option if the two pieces cannot be reconnected but that is not the initial plan.

I am calling the local ET tomorrow to get an appointment to address the irritation issue to see if she has better suggestions than the original nurse.

i hope to hear tomorrow or wednesday regarding my return to work approval.

thanks to all for the support.

mrlamb
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/5/2011 9:09 PM (GMT -6)   
sorry, i misread your post.
I thought you said it sounded like i HAD a J-pouch :-(

Yes, i will definitely talk to the reversal surgeon about a J-Pouch if this current status is not reversible.
However, the current UC is only visible under microscope, completely invisible to the naked eye (colonoscopy).
I lived with fully visible UC for 20 years. I am not a GI specialist but to me this is a much better condition that it has been for the previous 20 years.
sure, i would like to be 100% UC free but even in the previous condition, it did not cause me any pain/discomfort or other inconvenience (except when first diagnosed - it was at it's most severe)

until i read this forum i had never heard of a J-pouch - i am very grateful for your insight as it seems there is a solution even if the current one fails.

thanks again

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/5/2011 9:46 PM (GMT -6)   
mrlamb,

WOW! Good luck with all of this! just curious, what cruise line do you work on (If you cannot mention, just mention some of the routes it goes on.)

I applaud you for working on a cruise ship. I have been cruising since I had to get a permanent ileostomy in 2007 due to a severe colon/rectal injury in 2006. I have not dared fly due to air pressure changes in the gut and I have been going on trains and ships everywhere. I LOVE cruising. BUT I do notice that the workers on those ships work EXTREMELY hard. But it must also be an awesome job :-)

I don't have UC or any intestinal disease so cannot advise on this aspect. The advice from the others sounds good to me. I really hope you get things squared away and can return to your job. I bet you love the sea. I know I do.

Regarding your last line in your original post............I have been there. My original injury was done by 2 docs who did (what upon review was) an unneeded sigmoid colon removal and several other "internal prolapse" procedures, most of which did not need to be done, many weren't consented to, there was a misdiagnosis, stuff done wrong per reviewers, then NO follow-up to complications. Due to my rectum, colon, and for 7 months, my small bowel also being scarred essential shut with recurring small bowel obstructions and inability to defecate due to the colon/rectum scarring, I had seriously though of taking the route you have mentioned. BUT something kept me going. Over 13 months I had to see 11 surgeons at 7 medical centers cross country before finding one doc who could fix me the best that could be done so I could once again eat, gain nutrients, and pass waste. What could be done was massive adhesion take down and creation of a permanent ileostomy. Thankfully the stoma is great and so far so good. Since losing a quarter of my body weight through that whole 13 months, I have now regained ALL that back plus 10 lbs that I have to lose! BUT I'm glad I hung in there. Life got gooooood! You never know when you are going to get help. Just don't stop trying. easier said than done, I know.

If you beat your drug addiction, you can beat this too. All my best.

Best wishes, Rosemary

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/6/2011 6:46 AM (GMT -6)   
I think the "positive thinking" thing can be salt in the wound..... what happened sucked, and to say you have to be positive about it all the time just makes it even harder to deal with.... although it makes it easier for a lot of other people if they never have to see the pain and struggles.

On the other hand, I'm sure there are many positive things in your life. As Rosemary said, you beat drug addiction. After taking a stress reduction class, I started writing down 5 things I appreciated at the end of each day. I also write the best and worst things that happened that day, and something ordinary. I've been doing this for almost a year .... some days the good things might be on the order of "breathing" or "being able to walk" or "sun was out" and other days I don't even have to think about it .... sometimes the "worst" thing is the same for weeks, and it's almost always medical, but reading back is a good reminder that things do change ...

So, for me, what's helpful is to try to notice the good things and pay attention to them too. Not to be super humanly positive about the bad things, but just to be aware that no matter how bad they are, they aren't the only things there.

Take or leave as is useful to you.

Glad you're going to be in touch w/a nurse soon. That could make a huge difference.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/6/2011 8:32 AM (GMT -6)   
One other thought -- don't know whether this might help, but I've gained some weight since surgery, and I also wear a convex wafer now. I was having some problems keeping the wafer down due to the way the roundness of my belly falls. My nurse told me to push really hard when I put the wafer on to flatten out the surface that the adhesive is sticking to. It helps a lot..... I wear the coloplast sensura one piece, but the hollister I tried once would have been similar.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 9/6/2011 1:01 PM (GMT -6)   
I have found that Eakin Seal SLIMS work the best for me. They are thinner than adapt rings and the regular Eakin Seals and I have had no issues with them melting or covering my stoma. They are also very easy to remove unlike the thicker eakin seals. YUCK

What I do is I heat the eakin slim seal in my hands for about a minute, then I stretch it a little bit, just enough to squeeze my stoma through, then I push it onto the skin. It has worked wonderfully for me. I also put some paste right around my wafer hole for some extra protection. I also put the paste into a syringe and squeeze a thin ring around my stoma, directly onto my skin too.

Have you tried coloplast? I prefer Hollister, but will wear coloplast too. I just hate the coloplast bag closure. The convatec moldable wafer always unfolded on me and caused the output to go underneath the wafer for some reason.

Keep posting and good luck, Tracy

:-)

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 9/6/2011 1:27 PM (GMT -6)   
Mrlamb, if the seal is dissolving at about 24 hours, why don't you start using the one-piece bags, I woud reccommend convex ones or convex light. I use a one-piece system (together wth some stoma powder on my skin and an eaken seal on the bag before I put it on) and I change the bag every morning. So it doesn't matter what happens to the seal after 24 hours, becuse I get a new one. I'm in Germany, where the insurance commpany "allows" me one every day.
I also take off the old one before getting into the shower, and I shower with an exposed stoma. I gives me this feeling of "letting it breathe" and "making friends with it" which helps me cope better psychologically with the entire business. I even imagine that it appreicates the few minutes without the bag....

It sounds to me like they don't want to reconnect if you still have collitis. But they can't just leave you like that. Like others have written above, the rest of your colon could come out and they form a jpouch with your small intestine. When it heals, they connect the jpouch to your anus and remove the rectum UC is all gone.
I hope you do some research and maybe a small bit of traveling to get you to a surgeon and GI who are skilled and knowledgeable.
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