Crohn's Disease Forum » Surgery » Stoma Subforum » Feeling alone.

03-12-2012, 03:43 PM   #1
Join Date: Feb 2011
Location: Washington

My Support Groups:
Feeling alone.

Just got home after receiving an diverting loop ileostomy. In the hospital I was ok with problems. Then home for two days and I've had four leaks and I just kind of broke down today so frustrated with everything. With my father and his attitude towards this thing, and his unwillingness to even google ileostomy. He's not the one who has to change it he says. hahh. It's about supporting me and understanding what i'm going thru not ...being my wafer changing bitch.

Fortunately a volunteer from the hospital came and helped me with my ostomy today.....we called my dr's office to set up some visits from a nurse for a while.

The output comes out of my stoma rather close to the skin so using barriers should help for a while..I know it'll get better with time and just gotta keep a chip upper lip till then.

Thanks for reading. :'<
Inspecting your local city bathrooms since 2006!

Diagnosed 2006.

Hospitalized July 2010 for obstruction.

Nov 2011 Colectomy with Ileorectal anastamosis.
Shortly after fistulas and pelvic abscesses formed.

March 2012 Temp loop ileostomy is born
Short gut syndrome also born and forced me to be on TPN for several months to maintain living.

Oct 12 Take down surgery for "Ollie"
Sorta miss the bugger

Current medications Remicade and Imuran
03-12-2012, 04:59 PM   #2
Nyx's Avatar
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
You said it yourself, it does get better with time and practice. And once you get the right appliance you should be laughing! Call the suppliers and get them to send you some free stuff to try.

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-12-2012, 05:28 PM   #3
Senior Member
tots's Avatar
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I am very sorry for what you are going through. I have not had to have surg. with my Crohns but, my husband does not understand very well and gets pretty pissy at times when he feels like it.

Just keep searching and reaching out to people in your life (and here)
who support you- even if they dont know much about what your going through.

Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!

03-12-2012, 05:32 PM   #4
Senior Member
robbo87's Avatar
Join Date: Dec 2008
Location: Wigan, United Kingdom

My Support Groups:
Keep going, We are all hear to support you, It's not nice at first and it can be a lot to take in but with time and help from the stoma nurses etc you will get confident in living with an ileostomy.
My Story
Diagnosed 2008
Currently taking
omeprozol 40mg
codeine x4
ferrous sulphate
folic acid

ileostomy, colostomic mucus fistula stoma. gastostromy after recent surgery

tried, prednisolone, pentasa, azathioprine and infliximab
03-12-2012, 06:36 PM   #5
Best of British
Chrismac's Avatar
Join Date: Apr 2010
Location: Newcastle Upon Tyne, United Kingdom
I haven't had an op yet, but I know the frustration and the feeling of not being able to cope anymore. But it will get better. Low moments feel like they will never leave, but they always do. Keep fighting. Be strong.
03-13-2012, 02:44 AM   #6
Join Date: Feb 2011
Location: Washington

My Support Groups:
Hey gang I appreciate the words of encouragement! There's a support group for individuals with ostomys that gather at the first month at the hospital so I'll make sure to check that out. I think that might help..
03-13-2012, 02:48 PM   #7
Terriernut's Avatar
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Getting help from fellow Ostomates will make all the difference to you. No one like a 'pro' to help!

We are all here as well. I think reading through all the threads will give you alot of info and help, never mind a few good belly laughs! And it puts it all into perspective.

Dont get down, get serious. You have to go thru a learning curve, like riding a bike. And trust me, we all get leaks, especially at first. If you have a stoma nurse, use her, mercilessly!

Dont forget, you arent alone, we're all here. And as for your Dad...well, I am hoping he's just frightened and will get a bit better with time.
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
03-13-2012, 04:30 PM   #8
Senior Member
shazz's Avatar
Join Date: Nov 2011
Location: Plymouth, United Kingdom
Sorry you are having a hard time of it.
I am 6 weeks post op form having my colon removed and ileostomy formed.
I had one help of a weekend not long after I got home. Changed bag after bag. Seemed no end to it. Called my stoma team on the Monday morning and someone was with me within an hour. Lots of different bags to try. In the end I chose a pelican convatec bag with a belt. I now even forget I have got one on!
Things are hard at first but so is everything new. Remember we are here and you are not alone.
Chin up hun, you can get through it.
DX: September 2011 UC now possible Crohns Feb 2012
Have tried: Pentasa(all forms),Prednisolone,Aza, 6MP, Infliximab,colifoam,metronizadole
Allergic/sensitive to: Penicillin, medical adhesives, tramadol
Am on: Citalopram,warfarin, paracetamol
Ozzie was born on 2/2/12
23/2/12 p.e in both lungs.
Now the gallbladder decides to say hello!!
03-14-2012, 05:19 AM   #9
Senior Member
2thFairy's Avatar
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
KimchiiFiend, that sucks! Having an ileostomy sucks....until you learn how cool it can be. The whole thing is extremely overwhelming at first. Just knowing it is there is bad enough and then you have to deal with bag changes, leaks, skin issues, etc., but really--it does get better.

Stick around. This place has saved my sanity. Before surgery to create the stoma (I had the same surgery you did), I told my family I wouldn't be leaving the house until I had my reversal operation. Within 4 weeks I began wondering how long I could put off the reversal.

Support is the key. It sounds like you have found a great starting point with your local monthly support group. In between meetings, if you need a good belly laugh, Misty (Terriernut) is great for that!
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-14-2012, 06:07 AM   #10
Senior Member
Samboi's Avatar
Join Date: Jan 2012
Location: Australia

My Support Groups:
Hang in there. The ostomates on this site are a wealth of information and an amazing support system. Without them - I would have been very messy and miserable. It has taken a long time for me to turn a corner - but they helped me all along the way.
They kept saying it would get better - and they were right!!
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Filgotinib trial Jan 2018
03-15-2012, 10:36 AM   #11
Neko76's Avatar
Join Date: Mar 2011
Location: Ottawa, Ontario

My Support Groups:
Hi KF, sorry you have had bad luck with the appliances so far. I had the same problem too a first (ostomy sx Nov 24th 2011) so I am still pretty new at this as well. Like some others have said get samples from every company and try them all. Actually the company representatives were REALLY helpful at sending me all sorts of things to try. I know that we are all very different and that what works for one person will not necessarily work for another, but after trying almost every 2 piece system, this is what worked for me.

Coloplast sensura click convex light cut to fit flange (11021).
Coloplast Maxi pouch 30 cm (11135)
Hollister Adapt mouldable ring (any of these would prob do, Eakin etc...)
Stomahesive paste on the ring as well.....

I also use the stomahesive powder around the stoma and then I swab the entire area that the flange is going to stick to with Cavilon Spray (it's a skin protection barrier that is also sticky so it helps the flange stick).

The main step though that makes the biggest difference between 3 or 6 days of wear is that after I put on a new appliance I lie down with a hot water bottle on top of my stomach (where my ostmy is of course) for about 15 min, this helps warm up the flange and adhere it to my skin. I then take off the water bottle and let my stomach cool down. This takes an extra 30 min which is kind of annoying but in the long run it's worth getting the extra 3-4 days out of my appliance.

Anyways, I wish you all the best in finding something that works for you, b/c it really is effing frustrating

03-15-2012, 10:16 PM   #12
Senior Member
Join Date: Mar 2012
Location: Australia

My Support Groups:
Sorry your having such a hard time. I completely felt the same about no one understanding what it's like to have an illeostpmy. At the time I didn't know about this forum, and I felt horrible just having to look into a mirror. My skin was constantly irritated around the stoma like yours, and I hated it. I went out with my 8 yr old little girl to mcdonalds, and a friend blatantly asked...'have u got a bag' looking down at my stomach. I was trying to hide it but had a borderline anorexic frame from all the weight loss prior to surgery.I almost ran for the bathroom.
Thing is, it does become bearable, and I didn't want to leave the house much before it was finally reversed, butin time I wasn't constantly thinking about the stoma.

I hope you feel better soon, and the support group sounds great. I think I would have felt better if I reached out to other ostomates at the time.
Best wishes xoxo
03-16-2012, 09:51 PM   #13
Join Date: Feb 2011
Location: Washington

My Support Groups:
Ahhh thank you for the great support and advice! My outlook since the last post is a little more positive. My father and I had a nice heart to heart talk and all is well in the household again

Since last week my output's been very high and I was slowly getting more dehydrated every day. Water or sports drink would literally shoot out me after consuming within 15 mins or so. Tried having sticky or thick foods to slow this process but to no avail. Went to the hospital for a day to get my potassium and hydrated. Received a prescription for Imodium let's hope that works. Since my temp ostomy is higher up in the intestine than the ileum about 5 ft I think, they said my stool will have a harder time getting thickened unfortunately. Has anyone with an ostomy higher up in the smll intestine had the same problems and what suggestions do you have to thicken stool?

Also just when I was getting used to the hollister brand bags my skin started having an allergic reaction, but fortunately I have samples from two other companies to try out. Byron and ...something that is escaping my tired mind. Hah. Thanks gang and wish me luck!
03-17-2012, 02:31 PM   #14
Join Date: Feb 2012
Location: US
Hi Kimchii - Glad to hear things are going a little better for you. Just wanted to add my two cents and wish you the best. I had an ileostomy in October 2011 and just had the reversal two weeks ago and I completely understand what you are going through. I had little support at home while I was "with stoma" and was in tears nearly every day at first. Know that the first weeks after surgery are the worst. Your stoma will change a lot over the next few weeks as you heal and the area becomes less inflamed, which can cause even more headaches. Remember over the next several weeks to remeasure your stoma and adjust your template appropriately (ostomy nurses are wonderful in helping out with this - I always cut mine too big or too small and it was a huge help to have the ostomy nurse help me create a new template every once in a while.) Other suggestions:

- You mentioned your stoma output was close to the skin (so was mine) - be sure to ask about a convex wafer if you haven't already, also cohesive seals worked great for me. Holister Adapt also makes a convex ring - never quite worked for me but it seemed good in concept.
- Regarding thickening output, my stoma was at the ileum, not above, but bananas were always a great thickener for me. I ate 1 banana a day.
- Regarding water and sports drinks, my nurse recommended sipping consistently throughout the day instead of having a big glass of water all at once. THis seemed to help me a bit.
- If you're feeling tired, be sure to have your B12 checked. Since you're bypassing your ileum right now you might be short on B12 and can get a simple shot for some added energy

Hope this helps!!

Tackling this disease on my own and just hoping to get back to a 'normal' life again!

My Story:

- 3/2012: Scheduled for ileostomy reversal and completion of resection
- 10/2011: Small bowel resection, 30 cm inc. terminal ileum, temporary ileostomy
- 2/2011: Diagnosed w/ Crohn's in terminal ileum
- 6/2010: First symptoms @ age 32

Drugs (present): none
Drugs (past): prednisone, flagyl, prilosec, imuran, humira

Crohn's Disease Forum » Surgery » Stoma Subforum » Feeling alone.
Thread Tools

All times are GMT -5. The time now is 03:26 AM.
Copyright 2006-2017