just got news that i have a large parastomal hernia and need surgery

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provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/8/2009 12:36 AM (GMT -7)   
has anyone with cd with multiple bowel resections and all the other junk that goes along with cd also
with a colostomy got any advice for a parastoma hernia operation that i'm facing?  i can handle cutting my guts out, sewing up holes,  ugi's,lgi's but this is a new one for me. i was 10 when dianosed and murphy's law has followed me around like a lost puppy. i only have a few feet of intestines left and have offered many times to be the experimental intestinal transplant. i have been case studies for duke and baptist/wake forest. just wish there was a complete list of absolutely everything that is connected to, because of, symptom of or has to do with cd so i can check them off as i go. i am greatful and blessed to have had the last 7 years without major complications. i had a permanent colostomy 10 years ago and had a really rough start. developing allergies to the products needed for proper care was horrible and with this next surgery, i don't want that experience again. what can i expect with this type surgery? most likely,the stoma will be moved to another area on my abdomen so they can repair the hernia and heal the muscle wall. how long will it take to heal and i can get back to my normal?
thanks for listening,i don't get to talk much about crohn's.
provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/8/2009 12:39 AM (GMT -7)   
Wow. You've had an incredibly tough time. *Nineteen* fistulas? Wow.

Pro, we do have a few people here with ostomies and hernias. I'm not sure if they have them both at the same time, though.

I have a feeling you might get more responses by popping over to the ostomies forum and posting your question there. The ostomies forum doesn't move quite as quickly as the Crohn's one, but I think there's more likely to be someone there who shares your situation.

Best wishes to you, and hoping for smoother days ahead.

Ivy.
Co-Moderator Crohn's Forum.


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/8/2009 1:00 AM (GMT -7)   
thanks. i do visit that forum sometimes but since everything in my life revolves around cd, i like this forum. seen a lot of new meds listed i've never heard of before. since my ostomy, i haven't had the crohn's specific meds the last 8 years. i've been fortunate.now that i'm having problems again,
reading through some of these posts has me going, "huh?,what's that?" lol. other than azulfidine and prednisone,flagyl and the older meds, i've only had pentasa. which was not approved yet. i was in the testing group at duke and had to drop out after 3 months in the study because the crohn's was severely angry at me for apparently trying something new! this next surgery has me worried though. not knowing what to expect afterward and having 2 kids dependant on me(they're 15 and 17 so they do most things but get themselves up for school). my 17 yr old was in a bad car wreck last week so my stress level is has shot thru the roof and having to get him back to normal,get the insurance company to take care of the bills, get my daughter back forth to her drs. appointments, and now this. i'm finally getting a few gray hairs.
provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/8/2009 1:02 AM (GMT -7)   
Wow. That's tough.

Have you been plugged into support networks in your local community? You may be able to get some home help, before and after the operation, to stop the home life from getting too out of hand.
Co-Moderator Crohn's Forum.


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/8/2009 1:20 AM (GMT -7)   
we used to have a crohn's and ibs support group at the hospital here but it kinda fizzled out 4 or 5 years ago.

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/8/2009 1:28 AM (GMT -7)   
I didn't mean that sort of support group: I meant a council-subsidised cleaner, maybe someone to help you with teen-care, transport, shopping, things like that? It must be daunting to be facing major surgery when you have two kiddies depending on you, especially if your son has higher needs right now.

I.
Co-Moderator Crohn's Forum.


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/8/2009 2:28 AM (GMT -7)   
i have wonderful neighbors who would do anything i need but they have jobs and are gone most of the days. my sister lives about 10 minutes away but she's had both hips replaced due to joint dysplasia/congenital coxa vera and is limited in her abilities. she also has a sixth grader that is totally dependent on her for her needs.she helps when she can and i help her when i can. that's about it for support around this area. my mom used to help with the kids when they were babies but she passed away of mycosis fungoides cancer in 95 when the kids were 2 and 3,it's been me, my dad and sister since. now,it's mostly just me and my kids. dad is gone to the beach on business from tues thru sat nights. my sister and her daughter moved in with him last summer when she separated from her husband. she's dating now and spends much of her time with him so i try not to ask her for help unless i absolutely can't do it myself or one of my kids can't do it.

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/8/2009 3:52 AM (GMT -7)   
Hi There is someone on here who has SBS and he is facing a hernia operation soon too and already has had one .Usually is on at night so maybe he will see your post also a UC post about ostomies was posted this week and it might have some info on it, I will try to find there names after I enter this post and get back on here to let you know. I have a hernia too but no ostomy. Be right back. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/8/2009 3:59 AM (GMT -7)   
Hi Back again right now it is on page 3 and it is called IBD: Polls open for Best Medical Blog the posters are Mark & Megan .So if you go a few pages to find this post you might find some help there as they have posting and info's on ostomies not sure about hernia's but you might find some info. Best of luck with your surgery. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/8/2009 5:41 AM (GMT -7)   
thanks so much for your help. this forum seems to have a super group of friends and a ton of support.

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/8/2009 9:41 AM (GMT -7)   
hI Thanks we do have loads of good caring people here that really do help support each other it has been a good help to me. So when are you scheduled for your surgery? Yes there are lots of meds now Remicade, Humira and many others. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/14/2009 6:09 AM (GMT -7)   
not sure when surgery will be yet. my gi was going to schedule me with a local but since we don't even have an et nurse in this county, i went to look up where my surgeon is who performed my other surgeries. i LOVE that man soooo much and was super happy  when i saw he was back at wake forest univ phys/baptist hosp.    i gave him a call and talked to his secretary. she's getting with him to give him an update. i called my gi and told them who i would prefer and if they could give him call to start setting it up.    i haven't heard back yet. i'll call them this friday if i haven't heard from them yet. un the mean time, my stomach so tore up i think i might have an ulcer again. par for the course! i'll keep you updated. i haven't been back on until today. still trying to get my son's wreck injuries taken care of along with insurance dealings and the schools here moved the end of course testing up to this week because of the inaugeration next week.  on a super good note.....my daughter came home and said her physical science teacher told her she has a 99 average this report card !  she loves her science!!!!

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/14/2009 7:11 AM (GMT -7)   
Hi Glad there is a little cheer in your life and hope your son is doing good. Sounds like you have a good Dr. and one that you have had before helps with easing into things. Yes let us know how things are going .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/14/2009 7:34 AM (GMT -7)   
Sending good wishes that your surgery goes well and no complications pop up. Keep us posted.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/14/2009 7:41 AM (GMT -7)   
Thanks. i'll keep everyone posted. i may not get on everyday but i do check in a couple times a week when i'm able and as soon as i here back from my surgeon, i let you know. hopefully,we can schedule for the summer after the kids get out of school but i doubt he'll wait that long. surgeon is a 2 hour drive away and the kids are only allowed to miss 10 days of school. my first ostomy surgery i was in for a week and a half. he will most likely move it from one side to the other so it'll be like having a new one again only i'll know how it works this time and i'll be sore on both sides. small price to pay when i think," ye hi! i never have to sit on a public toilet again!" .

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!

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