for others who have had their back door sewn shut....?

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patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 2/6/2010 3:59 PM (GMT -7)   
Greetings!  I'm a regular from the crohnie board, but just had my rectum, colon, and terminal ileum removed, so I'm officially an ostomate now, I guess.  'Ello Mates.
 
My question is for others who have had their rectums removed and thus their anus's (or ani? what the heck is the plural of anus?) sewn shut.
 
My crack looks like a chicken comb... all irregular bumps sewn in a haphazard manner with openings here and there....
And through the random openings things are still oozing.
This oozing disturbs me.  It is sometimes reddish like blood.  Sometimes very smelly.  Sometimes non-existant.
Calmoseptine cream and A&D help.  I'm wearing pantiliners down my backside to keep from oozing through my clothing.
 
I'm three weeks out of surgery.  I don't see my surgeon again until the 19th.  The oozing is not so much that it warrants a call to the doc, I just was wondering if anyone else had oozing? 
 
Is this just until it heals, or do I have to look forward to this for the long haul maybe? 
 
I can at last sit on my butt without pain, more or less, so I really thought this leakage would have ceased by now.
 
Any experience, thoughts or advice are much appreciated!
THanks all.
 
 

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 2/6/2010 5:28 PM (GMT -7)   
glad you found us over here!!

I'm not sure what to tell you...I'd be a little worried that it smells. Are you on antibiotics? And did you get instructions for Sitz Baths? I did them for a few weeks and it definitely helps with the healing.

Just like our disease, we all recover a little different, and sometimes you can get an infection after you think you've healed...so don't ignore what is going on! Keep track and if you run a fever, call your doc immediately.

Things will get SO MUCH BETTER! You are only 3 weeks post op and that is a HUGE surgery so don't push yourself. I will be celebrating my 2nd anniversary for my proctocolectomy on Monday:) and haven't regretted a thing! Recovery isn't easy but it's temporary and I feel great (knock on wood)! It did take me a good 4 months before I was close to being myself but everyday is an improvement:)

Keep us posted!

patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 2/6/2010 6:25 PM (GMT -7)   
I'm not on any antibiotics... but that's a very good point. I haven't been running fevers, but that doesn't mean that something couldn't be amiss down yonder.... uhg. I do so hate the flagyl. But, you're probably right about the odor. I'll pay close attention over the weekend and give my doc a ring on monday just to run the situation by him.

Thanks for the warm welcome and encouraging words! I don't do sitz baths so well (tried from past surgeries), I'm a full-submerger myself, but I think one is in order every night until I get this healed up. Good advice, and a good excuse to relax in a nice hot bath! :-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 2/6/2010 6:37 PM (GMT -7)   
After surgery, my rear end looked little like chicken comb as well...I didn't have any pain or oozing though. It is now approx.10 weeks since surgery and all the stiches have disolved and my rear end looks fine...well as fine as my non-exsistant bum can look! LOL. I'd be concerned if the output is smelly....

-Allie
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/7/2010 9:08 AM (GMT -7)   
Hi and welcome! :-)

I think it's a good idea to chat with your surgeon on Monday. My surgeon left my butt wound open, and I packed it twice a day with saline-filled gauze, so it could heal slowly from the inside out. The gauze collected any discharge, and I don't remember there being any odor to it. Doing it that way took several months for it to completely close up.

I hope there's nothing wrong. Things will definitely get better!

Take care,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/7/2010 9:21 PM (GMT -7)   
I think the baths \i took everyday for the first two months after sugery really helped recovering. I'm not sure how the scar looks nike now. I still feel sensitive down there when riding a stationary bike though.

\hope you get it under control and feel better soon.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/7/2010 9:33 PM (GMT -7)   

Hi there!  I guess I'm the only one thus far that has had the oozy smelly stuff!  blush   My surgeon didn't think anything of it, as it was the fluids from the surgery...but it is wise to just run this by your doc to make sure he/she isn't concerned.

I did the same exact thing with the A&D and panty liners!  Awww...the ointment made it feel SO much better!  And  you know, I really can't remember how long I had the ooze...I was in such shock and extreme pain that it really such a small matter at the time.  I had my surgery laparscopically as well, and the area around my belly button oozed some too...it wasn't smelly though, but it looked similar to my bootie ooze. blush   (I'm blushing a lot in this chit chat!)

I'm super glad you joined us ostomates!  I named my stoma Penelope!  smilewinkgrin   So, WELCOME to our super cool club!!!! cool

smurf 


: )  Robin
 
29 year old Mommy of an amazing 2 year old and Wife for 3 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


bluflower
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/8/2010 7:43 PM (GMT -7)   
MY SURGERY WAS IN 07 AN I HATE TO TELL YOU HUN I'M STILL DRAINING. BEING A FEMAL ITS HARD TO TELL WHATS DRAINING. I'M CURRENTLY BURNING STINGING ITCHING TIL BLOOD POURS... I FEEL LIKE I'M LOOSING MY MIND I'M 38 YRS. OLD FEMALE. ALLERGIC TO ALL MATERIAL FOR PADS ECT. I'VE USED EVERY CREAM YOU CAN IMAGINE. I CASN'T HEAL DUE THE BIOPSIES.. I STARTED OUT THINKING I WAS DEALIN WITH HEMROIDS AFTER MONTHS OF TESTS MY DR. DECIDED TO SEND ME TO A SURGEON THAT FOUND ME 36 WITH 2CM TUMOR BY THE TIME THEY DECIDED TO STOP CHEMO AN RADIATION DUE TO FACT I CAUGHT MRSA AN THEY COULDN'T FIND THE SOURCE WELL IN SURGERY THEY FOUND THE TUMOR WAS 5CM ENCASED IN 8INCHES OF MRSA BASICALLY A HUGE CYST WRAPPED AROUND MY TUMOR. I WISH I COULD TELL YOU DRAINAGE WILL STOP BUT IT HAS ITS DAYS SOME DAYS LIGHT AN SOME HEAVY.. AN YES IF YOU HAVE A ODOR THAT A GOOD BATH WON'T TAKE AWAY GET TO YOUR DR. BLUFLOWER IN SC

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/9/2010 3:31 PM (GMT -7)   
Thanks for the replies, guys.
 
I see my doc on friday now, so we'll see what he says.  I'll keep my fingers crossed that all is as it should be.
 
Meanwhile, I think naming my stoma is a fabulous idea.  I'm thinking Chloe, for some reason.  We'll see.  lol.
 
Thanks again for the warm welcome.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/9/2010 10:21 PM (GMT -7)   

My cat's name is Chloe!  I love that name!  smilewinkgrin

My husband and I played around with unique girl names during our pregnancy and Penelope was one we both liked but just couldn't bring ourselves to naming a child that in Mid-MO!  So, the first name I thought of for my stoma was Penelope!  And I LOVE her!

smurf 


: )  Robin
 
29 year old Mommy of an amazing 2 year old and Wife for 3 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Contessa
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/10/2010 6:10 AM (GMT -7)   
Hi everyone! This is SO nice being with people who understand!! After struggling with UC, I had a permenant ileostomy and removal of my rectum 2 yrs ago. (2 different surgeries) it's been 2 yrs since and I still have daily nursing care to clean and re-pack a wound (or gap) that appeared after surgery in my bum crack (which wasn't the actual hole itself.) I have leakage daily, sometimes green and smelly, (infection- which doesn't concern the dr's) and then sometimes just discoloured fluid. I'm recently scheduled for surgery Apr.16th to have muscle taken from both my thighs and placed in the rectum as a 'filler'. I'm wondering if anyone has had this done or even have gone this long without healing??

Sandi :)

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 2/10/2010 11:24 AM (GMT -7)   
It's been almost 3 years since my surgery and I am still healing (itchy and soreness), but it took about 4 or 5 months for the oozing to stop...
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Duke_M
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/5/2012 5:27 AM (GMT -7)   
To those who were recovering for more than a year, how did you deal with your finances? Did you get Social Security Disability? My State Temporary Disability Pay just ran out and I need help. Can I get Social Security Disability from the government?

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/5/2012 6:23 AM (GMT -7)   
Welcome - definitely see the Dr and make sure everything is ok. An antibiotic might be needed.

Hubby's was sewn shut and there was NO leaking problems. The 2 areas where the drains were on the buttocks area too a little while to heal but as I recall there was no drainage from those either. Just 2 faint scars that look like a line where the drains were.

At first it was kind of lumpy bumpy but it healed nice and smoothly after a few months. It was an odd thing to have it sewn up but it is not needed and his Dr's opinion and method was in addition to the total removal of the rectum and anus since he definitely could not be a j-pouch candidate it was to be sewn shut.

There is definite differences of opinions and techniques by different surgeons for different reasons so we just have to hope and trust that the surgeon one has did what was the best for the person involved.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/5/2012 6:32 AM (GMT -7)   
Duke, you can get SSDI, but it's hard. Hopefully Brian will be along. He got denied, but appealed and won. There is a tendency to reject the first application, so you need to persevere. You might want to post a new thread that more specifically states your issue in the title, as some folks might skip this one thinking it's about something else.

I was very lucky in that I'm an academic, and I had applied for and gotten a sabbatical for this school year. For my hospitalization in Jan 2011 and surgery in Feb 2011, I went on family medical leave for about 10 weeks -- since we don't have official sick days to accumulate, the school paid me during this time. I'm getting half salary on sabbatical (much of which ended up being more like medical leave because I had to have another surgery and 3 months of bed rest after it).

I know my situation is not typical, and is much better than many people's.

You might want to start w/your work's HR dept to talk about disability. You'll need a doctor on board, and you might want to get a lawyer too. Best of luck.... with recovery and with finances.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 3/5/2012 7:48 AM (GMT -7)   
Y'all must be triple jointed to be able to see what it looks like back there. I haven't seen it, and don't want to LOL! Hubby, home health and the doc take care of it. I have had a drain placed, had a wound vac, did the packing and now we are on to some powder that has silver in it for this week. I do have the ooze, some days more than others - sometimes none at all. No smelly or blood though. It began to close up on the outside so my doc "poked" to open it back up and heal from the inside out. I believe last week she said it was 2in deep? I'll double check that this week.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 455
   Posted 3/5/2012 12:44 PM (GMT -7)   
I'm here!
Ok so first off my Doctor said that I would be back to work in 6 weeks after my surgery. I didn't have any bills really because I like to keep things paid off and dont like bills hanging over me. Only thing I really had is about 6 car payments left, insurance and phone bill. I lived with my brother and payed him rent, but he said that he would help me out on rent for the next month or two. My mom also said she would help me out.
Well I ended up being in the hospital for 4 weeks and my butt wound opened up. Ok guess it was going to be another 6 weeks. Well long story short nothing was working so I applied for ssdi. Some companies offer temporary dissability but if it's a smaller company they are not required to. Mine only has about 35 employees so they did not offer it. So after filling out tons of paperwork I got denied because they said that my wound is not expected to last more than a year. You have to be expected to be disabled for a minimum of one year to even be considered. At this time I still could not sit at all and needed a home nurse coming every day. I tried everything including a wound vac for a few months and it did nothing.
I appealed and got a lawyer and they denied me again at about 9 months with no improvement on my wound. FINALLY this month I had a court hearing. I was very nervous because they said that if I could work for 2 hours a day standing up then I am not considered disabled. My lawyer also said that they are looking at it as if this is a permanant condition and that they would be paying me for the rest of my life.
So I went to the hearing and they medical professional ended up talking the whole time about my wound history (reading from medical files) and basically said that I would have met the old criteria for perienal wounds, but based on the fact that I have not showed any improvement in a year and a half that I do now. So it's been a month now and I have no idea when I will get paid. I guess they can take their time and it could take up to 6 months.
I've had this wound for almost 2 years and I think it's healing very slowly. I basically get by with the help of my mom for money which she gives me just enough to pay my insurance and phone bills, so I don't really have extra money for other things. My brother ended up getting rid of the house and I moved in with my ex-gf. It's not a situation that I am very happy in, but she is letting me live here without paying rent and she packs me every morning. The trade off was that I take care of her dog every day and help clean around the house and with other things. If it weren't for them I really dont even know where I would be right now.

Another thing I did was I went to Department of human services and I applied for food stamps. When I turned in my application they asked when I got my last pay check. I told them over a year ago so they set up an appointment for that following wednesday. Went for an interview (in a line of over 100 people) and I got approved for food stamps but no other benefits since I wasn't declared disabled by the state. I don't get much at all, but I found a grocery store that is dirt cheap and I make the most of it. I am hoping that once they send my info for dissability I can go back to the office and get my cash benefits so that I can buy laundry soap, bath soap and shavers etc...

So my advice to you is to go to your local county DHS department and apply for the food stamps and get that take care of. They are pretty quick with that. I got my card in a few weeks. If you don't have insurance you can apply for medicaid. It will take a while because they need your medical records. Also they can put you in section 8 housing if you really need it. I am doing everything in my power not to because around here there are shootings and gangs that hang out in those areas.
Also hire a lawyer right away. They are basically paper pushers and they get 25% of your backpay but it looks good with the state. Lets say you are supposed to recieve $1,000 per month for ssdi and it takes a year before you approved. You will get a check for $8500 (if I did my math right lol). After that you start recieveing your full $1,000.
THey will basically coach you and tell you what to write on the applications so that it works out in your benefit.
Best of luck to you and let me know if you have any questions.
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