5-days before ileostomy...scared!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 5/5/2011 11:22 PM (GMT -6)   
Hi,

5-Days to go, before my Loop ileostomy. Today was my pre-admittance paperwork at the hospital, blood draw...then on to meet with an Ostomy Nurse for the first time. I do have to say the unknown is a little nerve-racking, everything is like a completely new language to learn. I am worried that I will have complications as I read on this site and it seems like a lot of people have had complications. Is this a common thing with this kind of surgery?


Serentiee

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/5/2011 11:47 PM (GMT -6)   
Hi Serentiee,
I totally understand your nervousness I think we all felt the same way before surgery. But you will be amazed at how much better you will feel. I know I was. There is a lot to learn but you have come to the right place as we all have our stories to tell. Yes I guess there are a few that had complications after surgery but not everyone does, so try to think positive and not worry about something that may never happen. I did get an abdo infection 3 days after surgery but I had several other problems in the lead up to surgery, mine was done as an emergency and there were lots of factors as to why I had problems, I was extremely ill and weak. I will be thinking of you and hope it all goes perfectly for you, try to keep in mind how great you really will feel after surgery. Take care and keep us updated on your progress
Doreen

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/5/2011 11:48 PM (GMT -6)   
My best advice is in the few days you have before surgery is do some research. When my husband made the decision to have his surgery we went online - you tube as well as googling various things concerning the ostomy - supplies etc.

Once we got exposure to what the wafer and pouch (bag) looked like, how it is applied and even you tube demos by very giving people (you only hear their voices explaining) it took all the mystery and fear away.

This is just my opinion but to have the surgery and not be prepared at all I think it might more more difficult. Since I am the wife and caretaker and in the very beginning he knew he had me to help him (I still do) it took a lot of the anxiety out of it. Plus for me I wasn't so squeamish as I already knew what a stoma looked like and basically overall what the wafer and pouch was all about.

Every person is different and some have issues but there is no way of knowing that and to worry about it before the fact only gets you more nervous. Hopefully everything will go well for you and you only have the usual healing/convalescing to do.

You will find this forum to be a real asset as the people here will be able to help you out and any questions you may have.

Good luck and when you are able and up to it let us know how you're doing.
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) and no longer in pain.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/6/2011 12:11 AM (GMT -6)   
Hi Serenitee,

Everything will be fine! :-) The pain medicine will help keep you comfortable after surgery, so you don't have to worry about being in pain.

It's important to walk as much as possible while you're in the hospital, so pack a robe and slippers. Walking helps wake up the bowel, and the sooner things start moving, the sooner you can eat solid food and go home. Every time my husband came to visit me in the hospital, which was about 3 times a day, I would hold his arm and walk a few laps around the halls. The nurses will walk with you, too, but they are busy helping other patients, so it's good to walk with family and friends when they stop by to visit.

Complications are not as common as you may think, because the people who have had surgery without any problems are not on here posting about problems, because they didn't have any. Just try to focus on the positive reasons why you're having this done. It is a learning curve at first, but before you know it, it will all become second nature.

Some other things that I brought to the hospital were eye shades, ear plugs, magazines, cell phone with charger, laptop, over-the-counter Gas-X, and hard candies. Trapped gas can be painful, so having some Gas-X on hand will spare you from having to wait several hours for the nurse to contact the doctor to prescribe it to the hospital pharmacy. The hard candies will help wake up the bowel and give you something tasty in your mouth before you get to eat any solid food.

Just try to relax by taking deep breaths and thinking positive thoughts. We're all here to help answer any questions you may have and so is your Ostomy Nurse, so there's no need to worry. You're in my thoughts and prayers for a successful surgery and recovery!

Hugs, 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.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/6/2011 4:01 AM (GMT -6)   
GOOD LUCK Serenitee!! you'll do great! can't add much to what has already been said, so just wanted to give you my blessings :))) keep us posted.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/6/2011 7:22 AM (GMT -6)   
If there's any way for you to meet someone in person with an ostomy before your surgery, I highly recommend it. I met someone through the CCFA, but the United Ostomy Assoc also has a visitors program. It was so helpful to see someone who was healthy living with the bag and who could show me the equipment. I put an empty bag on, put some water in it (applesauce is more realistic, but kind of a waste), walked around, took a bath, etc. Just made me a lot less afraid of the unknown.

Also, keep in mind that as Cecilia said, people are more likely to post online when they are having a problem than when everything is fine. So complications are over-represented here.

Other things for the bring to the hospital list: your own slippers; hospital socks are flimsy, and you need to walk. I also like to bring some nice air freshener for the bathroom. Lip balm -- it's really dry, and your own toiletries -- lotion, shampoo, soap, comb, etc.

Good luck.
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

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/6/2011 8:09 AM (GMT -6)   
Ditto - Ditto to the extra information above.........excellent advice and you have time to pull the stuff together for the hospital. Lip balm (we use the blistex cream) was extremely helpful keeping my husbands lips from getting dry and cracked.

Also a few different size pillows for the ride back home if you are uncomfortable to help you get into a comfortable position especially if there is any distance involved...we had a 3 hr drive and did stop 1/2 way and the pillows really made the diff.

Be sure to keep up with the pain meds as mentioned to keep you comfortable, walk, walk, walk too. I also took hubby for walks and didn't bother the staff...of course the IV pole had to come along with us.
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) and no longer in pain.

UC in Dallas
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 5/6/2011 10:31 AM (GMT -6)   
For me the worst part was just the boredom, 24 hours in a bed for several days is looooooong - minutes can seem like hours. I asked for sleeping pills to help shorten the days by a few hours. Take as many distractions as you can think of to keep you busy. Most hospitals have WiFi, so if you have a laptop you can get on-line. Bring some DVD's, books, crosswords - whatever floats your boat for stationary entertaiment. Also I recommend bringing a no-rinse shampoo since it will be a while before you can shower with your incision. It's a water-like liquid you use just like normal shampoo, but you put it on dry hair and after rubbing it in just towel-dry your hair. It's really great stuff - I still use it all the time. You can usually find it in the hospital's pharmacy.

There are also endless options for ostomy supplies, so if you do bring a laptop, you can make good use of your time by learning about these options during your stay, and you can ask your ostomy nurse about any questions you come up with while going through the supplies. I get my stuff through an internet supplier that has a huge on-line catalog of almost every ostomy product you could imagine - www.byramhealthcare.com (from the homepage click on "Ostomy" on the left, and at the bottom of that page will be a link for their ostomy catalog in .pdf format that you can save). They take most insurances and always have your orders at your door 2-4 days after you place it. (And they call me every month a week before it's time to re-order to remind me.)

steelcitystrong
Regular Member


Date Joined May 2007
Total Posts : 41
   Posted 5/6/2011 3:51 PM (GMT -6)   
I agree with the ear plugs and sleep mask, they were lifesavers to me in dealing with my roommate and the constant people in and out of your hospital room all night. Comfy clothes (loose waist bands are a must), nightgowns were great too. Bring an old pair of slippers (I bought a pair for $3 at Walmart, threw them out after my hospital stay) and fuzzy socks helped with the cold feet. Walking really is the best thing you can do, I walked with each visitor that came with me. And once the food comes, eat slowly, chew everything better than you ever did in your whole life, and try to eat what they tell you.

Make use of your WOC nurses and have them sign you up for as many samples/starter kits as they can. I got a Hollister starter kit and lots of samples from Convatec in the mail just a few days after I got home. It was nice to not have to do anything. And they will send you home with lots of supplies too, take all you can get! I got lots of sterile pads, scissors, gauze, tape, etc in addition to all the ileo supplies you'll need. You can never have too much stuff, you can make a pack to carry in your purse. Hollister's starter kit comes with a black little zippered bag with compartments that fits everything you need for when you're out and about. Depending if you have a mucous fistula, they gave me Mepilex bandages and they are GREAT, didn't rip your hair off, were absorbent, but super expensive to buy outside the hospital.

Also, as great as the pain pump is, they took me off it after 2 days of it. Then you are on oral pain meds, they will be AS NEEDED, meaning the nurse won't automatically bring it to you. Tell them you want it the max (every 4 hours or whatever your orders are for) and they will bring it to you. According to my doctors, its better to get on the oral pain pills ASAP, so don't freak out if they take your pain pump. I wanted one last click haha, its good stuff! I wasn't in pain once on the Percocet, so it isn't like you are uncomfortable. Walking, eating, getting out of bed, drinking enough, all things I did helped to get me out of the hospital on Saturday after the surgery just a few days prior on Tuesday. No complications either! A smaller sized pillow, the hospital had one and I "borrowed" it--fits perfectly along your belly under the seat belt, but a bed pillow works too. Make sure you are adequately medicated with your pain pills on the ride home, the day of discharge is exhausting and watch those pot holes in the car!

Best of luck!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/6/2011 4:02 PM (GMT -6)   
Oh yes....part of the discharge process was giving us a signed order from the Dr with the diagnosis info to fax to our supplier for the first order. I did line up with Edgepark before surgery setting up an account, supplying our Blue Cross info etc. so when it was time to fax for the first order a lot of the "red tape" was already taken care of.

Also it was determined and taken care of by their patient services person to coordinate home health care visits for when we were to be discharged with the respective agency and blue cross authorization for same. (We stayed at the nearby hotel for 4 days after discharge and the agency came to the hotel room on day 2&3) then finished up at our home for the remainder of visits.

If you have someone who will be with you in the hospital possibly as long as they have a notebook of some kind to log and date who said what & when. Since I was basically in the room from 9am - 11pm which had very comfortable amenities I found I was always busy jotting something down all the time. Sometimes it was like a revolving door with various people coming and going and found taking notes really kept me/us focused as you just can't remember everything told to you especially the patient when on pain meds in the beginning days of recovery. My laptop was a lifesaver as I could send out bulk e-mails on his progress and could read e-mails to him from family and friends and helped pass the time when he would be resting and I had time on my hands.

I put a label on my husband's cell phone with his name, room # and my tel # just in case it got separated from him. Plus having it on his bedside table he could call me if I was out of the room to get some lunch or dinner. Labels on other personal effects are a good idea too just in case if it is something you want to be sure is returned to you.
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) and no longer in pain.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/7/2011 3:53 PM (GMT -6)   
ditto all the great advice above.. especially the nice air freshener for the bathroom! oh and one of the best things I got (which no-one told me about) was special ostomy underwear - holds the pouch in place and gives support but without it being next to your skin. Ask your ostomy nurse for as much support as you need and NEVER be afraid to ask no matter how silly it seems to you.. good luck. x
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - not going well...

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/7/2011 7:59 PM (GMT -6)   
Great suggestions here..... one other good thing is some drops for the bag. You probably don't have time to get M9 drops, but someone here suggested hydrogen peroxide, and it works really well....you can put some in a smaller bottle to put in the pouch to make it smell better. My output smelled really foul at first, and even w/the air freshener, it was hard to deal with, and the hospital didn't have good bag deodorizers.

You definitely want to be able to block out light and sound..... I like an ipod (and also earplugs, and definitely an eye mask)
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

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 5/9/2011 12:56 PM (GMT -6)   
hi Serenitee, i hope all goes well for you in hospital, you mentioned in your initial post that its all new to you & sure enough its all new for each & everyone of us wneh we go thru it first - you'll be surprised how quickly you will pick it all up when you are in the middle of it & you will learn which bits of info you need & those you dont need - my approach to the op, hospital stay & recovery was that the docs, surgeons & nurses knew what was ahead ( they had seen it/ done it many times before) - they would not get hassled no matter what happened - they were trained & experienced so i put myself in their hands & happily they took very good care of me, there were lots of aches & pains in the days after the op & there is lots of healing to do but the nurses/ docs can put you at ease by explaining these & assuring you that they are normal after your surgery

my advice for what its worth is somewhat contradictory & it is, as has been said already, 1) walk as much as you can & 2) rest as much as you can - you might get bored in hosp or you might have many responsibilities outside/ at home but my view is that as the patient here your priority is to take the time to get well so that you can gat back to normal life asap - this may mean that you laze about in the hosp or at home for longer than you might like but in the long run of all the years ahead, a week or two or 6 or 8 will be time well spent to recovery fully

cheers & best wishes
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 5/9/2011 1:52 PM (GMT -6)   
Serenitee-

Hope your surgery goes well. My advice is to try your best to take it day by day and try not to worry too much about what the future will bring, as things have a way of working themselves out with time. It is really easy to get caught up in a cycle of anxiety over all the what-ifs. I found this happened to me before and after surgery. I am a real plan-for-the-future-type, and I was trying too hard to be in control of everything. Eventually, I just had to let go and let the cards fall where they may. Yes, complications sometimes happen (but many times they don't). If they do, your doctors and nurses will help you through them and before you know it, you will be healed up and feeling well again.

Villager is right, you will be surprised at how quickly you pick things up. And if it takes a little longer, oh well. My mom always joked with me that I was going to have my ostomy for years and years... no need to try to figure everything out in a day!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/201

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 241
   Posted 5/11/2011 10:26 AM (GMT -6)   
I was worried too!  I had mine on February 7.  I was very fustrated at first with the "Battle of the bag" but I have it down now.  I finally tried it without the paste and it is wonderful.  I named her "coach".  I feel so much better.  Good luck.  Don't be frightened!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/11/2011 10:43 AM (GMT -6)   
     Sometimes too much info is a bad thing..lol.  I did a lot of online reading and watched a few videos of people with end ileos.  Scared the crap (no pun intended) out of me.  My surgeon didn't tell me of any complications beforehand.  All he said was that I was not a candidate for j-pouch (age, other health issues and extensive use of prednisone).  The ball was in my park.  I told him I had no problem wearing a bag, I was just so sick of being sick.  I did have a few complications post surgery but I had excellent care, wonderful nurses and doctors who took great care of me.  My hospitalization lasted 11 days.  The surgeon wouldn't let me go home until he was satisfied I was healthy enough.  I had a few blips since surgery, hematoma inside anus (he doesn't sew it closed).  But, all in all, I am in a much better place.  Used to take 17 - 25 pills daily plus rectal meds and now only take 1 pill for my blood pressure yeah .  Portapots are now down in the basement instead of stationed in almost every room of the house.  Yippeeee!
     Wishing you all the luck in the world!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 10:12 AM (GMT -6)
There are a total of 3,006,049 posts in 329,295 threads.
View Active Threads


Who's Online
This forum has 161820 registered members. Please welcome our newest member, Dogsitter2.
307 Guest(s), 10 Registered Member(s) are currently online.  Details
borrelioburgdorferii, JoHnGaMeR90, HeartsinPain, acarined, Kent M., BBN!!, Alex ArmPain, k07, Leah2013, Fresh