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Wondering what ileostomy recovery is like?

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Posted 5/10/2009 12:07 AM (GMT 0)
I'm seeing a surgeon on Wednesday to schedule ileostomy surgery and I have lots of questions. 

How long was your hospital stay?

What items should I take to the hospital with me?

Approximately how long did you have to take off work for recovery?

What was your recovery like?

I really would appreciate reading anybody's story..  Thank you ...

Butterfly

------------------------------

chronic constipation

motility disorder

open total colectomy Aug. 2007

Posted 5/10/2009 1:25 AM (GMT 0)

How long was your hospital stay?

I was in the hospital for 8 days total and the funny thing is I dont remember hardly anything from the first 4 days. I was in ICU for those 4 days and I dont remember this but I REALLY wish I did..everyone told me I looked at the nurse and yelled GIVE ME MY DRUGS  turn Just make sure your pain medicine theyre using for you works..bc if it doesnt work as well as you want it to..they can switch them. Oh, and if your really hard to get an IV into ask your surgeon about a central line..theyre AMAZING!

 

What items should I take to the hospital with me?

Take sweats and comfy clothes..shampoo and conditioner  (my mom washed my hair in the sink that was in the room bc it was higher so it didnt hurt my belly to lean over =) uhm..underwear lol pretty much what youd take if you were going somewhere and knew you were going to be gone for a week or so.

 

Approximately how long did you have to take off work for recovery?

I had my surgery Nov.19 and was back to work in Jan or Feb. I cant remember when exactly I went back but just whenever you feel comfortable with your bag. And dont be shy to leave it out of your pants. So what if ppl see it :-) They wont know what it is anyway lol Your stoma will make little froggy noises for about 2 weeks but dont worry, theyll go away. And also, it takes a little while to get your energy back. So dont be in a hurry to go back. It took me a few weeks just to be able to make my bed without getting outta breath haha

 

What was your recovery like?

My recovery was good. Ive never had surgery so this was my first and I didnt really know what to expect. The nights were kinda hard just bc I was used to sleeping on my side and I couldnt do that for a bit but the pain will go away and youll be able to in a few weeks =) And about 2-3 months after my surgery, I was running in the park and playing basketball..half court of course bc I got lightheaded easily when I got hot but that might be different with you. I had a great support group. My family and boyfriend were all really supportive of me and my healing time. I dont have my bag anymore..I just had reversal surgery 12 days ago but I sure do miss my bag. You wont have anymore pain or have to run to the bathroom anymore. You just eat and sit and wait and wait and wait lol and then you empty your bag when you need to. Its amazing! Such a convienience! Idk why your having this surgery but for me I had UC and to get the bag was AMAZING! I had no pain, no running to the potty, no more medicine!! I felt like a 17 yr old again which I hadnt felt like for over 2 yrs!

 

I hope this helps a little and if you have any ?s just ask =)

Posted 5/10/2009 2:28 AM (GMT 0)
"How long was your hospital stay?"
I was in for 6 days. I was going to go home at 5 but got a random fever so i had to stay an extra day. i dont remeber much either. Like Bella said, make sure you keep on top of your pain meds. When i woke up from surgery, this is how my thoughts went,
"oh my god i feel better. OH MY #(@*#(@*&(* GOD THIS HURTS!!! What did i do??? oh my god i feel better!"
And then i just laid there and said, "please help me please help me" cause it hurt!!!
I am not trying to scare you just want to prepare you!
But after a few minutes the pain was under control and the fact that i was now HEALTHY and i felt so much better!
A quick warning for you (i say this in all my posts and you may have seen it already) when you wake up you will have a clear bag on and your output will be this nasty nuclear waste green stuff that will smell like death warmed over and killed again! I freaked out!!! Cause i didnt know that was just because of the bile. After the second day when i started eating food, it went away and started looking and smelling more like regular poop! And when you get home, you can put on your cloth covered bags and you wont be able to see the stuff, lol. Again, not trying to scare you, just want you to be prepared!
All in all though, even though the surgery hurt the fact that i knew i was healthy was sooo worth it, and the pain was only bad enough for pain pills for about a week and half.

What items should I take to the hospital with me?
take either some really loose soft pants. Like i bought 2x stuff and i wear a medium! i also took big gowns, same thing bought 2x that way they wouldnt touch my tummy! I took alochol wipes so i could clean the bed adn stuff and so i could use those on my hands. I took lotion and chapstick. Also, either take some gas-x or make your dr write you a script for it. Then just stuff you would take when you go on a trip.

Approximately how long did you have to take off work for recovery?
i was out for like 3 months, but that was only cause my schedule got messed up i could have probably gone back at about 8 weeks, but i was a waitress and had to do alot of heavy lifting and walking and physical stuff.

What was your recovery like?
It was not that bad, the worst part was the gas, and i got dehydrated one time, be on top of that, get lots of fluids in you!
For the first couple of weeks you will have lots of output and TONS of gas, and it will be sooo noisy! But that goes away after a while.

Hope everything goes well for you!
Posted 5/10/2009 3:27 AM (GMT 0)
How long was your hospital stay?

I was in the hospital for 4 days. Everything seemed to be going great for me! I got lucky!

What items should I take to the hospital with me?
Bring your own undies!!! Stuff to keep you busy if you get restless. I brought my own robe and some flip flops for walking around the hospital. It just felt better to be in my own clothes.

Approximately how long did you have to take off work for recovery?
I had my surgery on April 17 and I'm still off but I plan on going back part time on May 19. It all depends on what you do and how demanding your job is. I work with a partner and should be able to sit when I need to. My energy level stayed pretty good. I went for a bike ride the other day which felt amazing! I encourge you to challenge yourself a little and not to baby it too much, but don't over do anything! It is a fine line yes, but a challenge is a good thing!:)

What was your recovery like?
I'm still doing mine. I have had 3 leaks now. I don't think my stoma sticks out far enough. My skin is very irritated! Other than that everything is great!
Posted 5/10/2009 5:36 PM (GMT 0)

How long was your hospital stay?

Bratcat was in the hospital for 6 days. She was never in ICU. Just a regular room (although she was able to be on the pediatric floor as a 17 year old).

What items should I take to the hospital with me?

Undies that you don't mind ruining (don't buy new pretty underwear that you love). Loose clothing. Bratcat didn't change out of her hospital gown for several days. All the regular things: toothbrush, paste, brush, makeup (if you want), footwear that is easy to get on and off for when you walk. We also brought little things to keep busy--word search books, a book, iPod, etc. Bratcat wasn't in the mood to even look at any of those things. The ped floor has crafts and videos but she didn't even use those (rare for her). However when she went for her reversal, we borrowed the Wii they have there--she kicked my butt!)

Approximately how long did you have to take off work for recovery?

Bratcat had surgery on July 3. We did that so she would have the entire summer to recuperate before school. She was probably ready to go back as early as mid-August. I think that is around the time she started back at her job.

What was your recovery like?

The first few days in the hospital were hard for Bratcat. She learned very quickly how to use her pain pump lol! She found it very hard to walk the floor (which they say is good for recovery). At home in the beginning, she tired easily. When she started coming out with us (like to the supermarket), she would use the motorized cart the stores provided. She found it hard to walk any distance. If she walked a long time, she would get pain in her upper back. But it didn't stop her from doing things. She just had to readjust her thought process for the time. Getting used to the ostomy was interesting. It took both of us over an hour the first time we tried to change her ostomy appliance! I remember crying in a post on this forum. But everyone is wonderful here with lots of great ideas. Over time, we found a good routine that worked for her. In the beginning we were a little "grossed out" by the ostomy. By the end I think we were almost going to miss it! (But we did take some pictures including a few with ostomy as the nose in the middle of a happy face made out of stoma powder!)

Posted 5/10/2009 5:54 PM (GMT 0)

I think everyone else covered your questions pretty well.   The only other things that I can add is: 

Ask for a spare pillow at the hospital.   You can use it as pressure against your sore belly when you have to sneeze or cough or sit up.  It really does help to hold it against your abdomen.  It's also nice to have to place behind you if you want to lay to one side, rather than on your back all the time. 

Notepad and pencil, just in case you think of something that you want to ask your surgeon or doctor.  Your memory may not be the best but jotting down a few notes will help.

Laptop to keep in touch with us!!!!!

Best of luck to you,

Posted 5/10/2009 7:04 PM (GMT 0)

Butterfly-

Did you find a local surgeon....

I think everyone has done well explaining. I was in a lot of pain and am still having issues. I has some breathing issues post PACU and had to have narcan four times to get me to breathe better....that was the worst experience ever. I had the pain pump for three days and then IV dilaudud, neurontin, and motrin. I was on 4/7-4/18, then 4/20-4/24 with abscess. My surgery was on 4/13, so really for the surgery I was in 5 days, but should not have gone home quite yes since I was back two days later.

I felt this was a much more painful surgery than the TC......having a midline inscision was much more painful to me and everyone is right about the clear bag. It sucks.......I could not stand it and the opaque bags ar emuch better, but they have to visualize the stoma. I had trouble with mine working....it too almost four days and they actually had to put a catheter in it to help dilate it becuase it was so swollen.

I took 8 weeks off, but I may take 2 more. I am planning right now to go back June 8, but I just do not know if I am strong enough. Let us know how your appt goes.

Lizzie

Posted 5/10/2009 7:14 PM (GMT 0)

Do all ileostomy patients have midline incisions?  If so, how long are they?  I had a long vertical incision for my total colectomy, but I'm not very knowledgable about an ileostomy, yet..  Can someone tell me about the incisions, and do you use a pillow in front of you to walk?  Is it hard for you to get in and out of the hospital bed by yourself?

Butterfly

Posted 5/10/2009 7:19 PM (GMT 0)

Everybody, thank you for all of your wonderful and quick responses.  I am really blind about this surgury at this point, but I just want my life back and to not have to worry about being constipated all of the time.  Since the docs at Cleveland Clinic said that this is best for me, that's good enough for me.  I'm having my surgery locally, so I won't have to be 8 hours away again and am praying that everything will be alright.  I had wonderful docs at Cleveland Clinic and I hope that everything feels the same as I go thru this, again.

Butterfly

Posted 5/10/2009 9:33 PM (GMT 0)
There was a thread in January where Robinbyrd and I were asking the same questions.

I had an ileostomy/total proctocolectomy. I was in the hospital for 5 days--I was anticipating 8 or 9 but egged on my this site, I got up and forced myself to walk and eat. I highly suggest checking your hospital website as mine had a detailed description of the preop procedure, what to bring for my stay, what would be provided in my room, parking (valet for patients). If you know the floor you'll be on, you might call over and ask what is provided. And if you're meeting with an ET nurse before the surgery, s/he might have some ideas for you as well.

I have an incision from my belly button to my pubic area. Nice and neat. I am lucky.

My recovery has been up and down and quite slow. I am finally feeling like I am in resting and recovering mode. I have not gone back to work (9 weeks past surgery) and have the rest of the school year off. I was in really bad shape prior to this surgery. Recovering from the malnutrion and dehydration from the crohn's has been challenging. It is still unrealistic for me to go back to the active teaching job I have. Everything I eat is a bit of a test. Tried scallops last night---big old mistake.

WHAT TO BRING: I did bring my shampoo, conditioner, but really didn't need them as the hospital provided those along with lotion, toothbrush, tooth paste, shower gel (I used for my sponge bath), baby powder, a plastic bucket for my personal items, slipper socks (although I wanted to change mine so my in laws brought more), maxipads for the rectal drainage. I was so swollen that using the hospital's huge underwear turned out to be best until I went home. Same with the hospital gown. I brought sweat pants and night gowns but just wound up asking for new gowns each day. I had lots of bloody drainage so I was glad to use theirs (which were huge! but comfy) instead of mine. I did wear my own sweatshirts over the gowns.

Here are the items I brought (mostly suggested by this site) that were most helpful to me:
-a notebook to write down my questions for and instructions from the ET nurse, surgeon, resident team, etc.. I also kept a list of "Thank you's" I needed to write or staff members I wanted to remember. The notebook also proved helpful as I was on pain meds and couldn't always remember things squarely.
-earplugs
-sunglasses (the lights often go on in the middle of the night for med change, patient needs---my sister thought I was high on pain meds when I asked for these but they were most helpful)
-light magazines (I brought books but the magazines were easier as I couldn't concentrate)
-gas-x
-chapstick, hand lotion, comb, nail file
-dum-dum lollipops, gum in case I needed to start the digestive juices but I didn't need it
-my husband brought my computer the third day but I had him take it home after I used it. As advised by this site, I didn't want to use it until I was off the heavy pain killers--I did send some pretty funny text messages.
-ipod to block out noise
-slip on slippers--my feet were very swollen


My best piece of advice is to ask for and accept help. The residents were very helpful in explaining all sorts of things (I don't know if you are going to a teaching hospital). The nurses showed me how to raise and lower the bed so I could get up. Each had a different system for emptying the bag and I didn't do it myself until I was really comfortable--at like 3am one night. Use the call button and don't be afraid of bothering anyone. Keep that water pitcher and ice chip cup full--keep drinking and taking in those fluids.

Again, I am recovering well but slowly. Today, I have been wiped out by all the output due to the scallops. I have been asleep, online, or reading. That's about it. I'm going to try to take a walk.

My prayers and good wishes go out to you!
Posted 5/11/2009 3:10 AM (GMT 0)
the gowns and stuff i bought to take with me were cheap ones that i threw away didnt even bother to wash.

Also, you may find that you will start your period, so you might want your own pads.
The underwear they gave me were this mesh stuff and i actually liked them alot.
Posted 5/11/2009 8:14 AM (GMT 0)
I was in hospital for 10 days. I found my i-pod invaluable for evenings when I couldn't sleep. Also bring really big comfy pants, I bought some cheap nighties but ended up just wearing the hospital gowns because they were comfy. Slip on slippers also so much easier to get your feet into the first time out of bed. My incision runs from above my belly button all the way down, but it hasn't caused me much pain and is healing well. The ileostomy it self I have found much easier to deal with than anticipated. The first time I changed the bag myself was a little traumatic for me, but just take your time and don't rush it and don't be too hard on yourself (the first time was the worst).

Good luck, hope all goes well. x
Posted 5/11/2009 6:07 PM (GMT 0)

Hi

I've just completed my eliostomy surgery on April 15th.  Recovery is going fairly well considering all that has happened. 

My question is, could not find anything related, "has anyone experienced any breathing/pulmonary problems following their surgery?"  Since surgery I've not been able to sleep lying down, ever since the recovery room I've had to sleep sitting up in a chair.  Only this week have I been able to sleep on my side, proped up by pillows.  Still not lying flat.  I feel like I can't get my breath.  I can breath fairly normal standing, but if I sit there's a marked difference and lying flat on my back is just impossible.  Just realized yesterday that I can't even sniff.

I had spent 8 days in the hospital following surgery, was home for three days but had to go to the ER due to the shortness of breath.  They ran alot of tests and found nothing.  CT Scan, ZT-Scan, Echocardiogram, Resportory tests, blood tests, etc.  Their final thought was it may be a mucus plug. 

A visiting nurse suggested it my be due to inflammation of internal organs putting pressure on the diaphragm/lungs when I sit or lay down.

Any ideas ....

Thanks  -  Bob

Posted 5/12/2009 1:35 PM (GMT 0)
You all are absolutely amazing. I feel like I have an entire new support family and I really appreciate hearing from you all. I've read and re-read everything you've written! My appointment with my surgeon is tomorrow afternoon and I'm anxiously awaiting. I hope that I'm able to schedule my ileo surgery and start feeling better. (I'm feeling like a blown up blimp..)

I have to admit, I have lots of nervous energy right now and last night I decided to go shopping for the hospital stay. I bought 4 different pj sets, and 2 containers of Huggies alcohol free baby wipes. At lunch, I want to stop by Walmart and find some of the girl cotton boxer shorts. Someone wrote that they were more comfortable after surgery. How about robes? Did anyone bring their own robe to the hospital?

Butterfly
Posted 5/12/2009 1:38 PM (GMT 0)
oh maybe noone said this, but if you dont have a heating pad and a body pillow at home you may want to get those. And once you start to heal, i think boyshorts are the best for holding the bag in, lplus you can still get really cute and sexy ones!
good luck tomorrow!
Posted 5/12/2009 4:41 PM (GMT 0)
Summerstorm, thanks for the fantastic advice, but where do I get "boy shorts"? Are they like female boxers?

I went to Walmart at lunch to find some female cotton boxer shorts but didn't find any... I do have a big body pillow at home..

Thank gosh my appointment is tomorrow..
Posted 5/12/2009 7:20 PM (GMT 0)

Butterfly I got mine at Victorias secret....they have cotton ones and they work great. They have all sorts of colors. I got the darkones fornow just in case and bought some sexy for later :)

Lizzie

Posted 5/12/2009 11:02 PM (GMT 0)
i get mine from jcpenneys, there are two brands that i buy the ambrielle, they have sexier types, like lacy and stuff. And then flirtitude and they are really cute, they have ones with dif designs, either their hipster or boyshorts are good. And they are pretty cheap, like usually 5 for 25. the other ones are more expensive and dont seem to last as long.
Posted 5/13/2009 12:29 AM (GMT 0)
Summerstorm, I just got back from shopping at jcpenneys.  Guess what?  I bought myself 5 pair of boyshorts and they feel so soft.  I also bought 4 pair of pj's.  All I need now is a date with the doctor and a pair of slippers!  The good news is my medical records came today and my appointment with my surgeon is tomorrow afternoon.  Maybe, I'll be able to sleep tomorrow evening.

 

Butterfly

Posted 5/13/2009 3:57 AM (GMT 0)
oh cool! which ones did you buy?
Posted 5/13/2009 12:13 PM (GMT 0)

I bought the 5 for $25.  Some were pink and white polk a dots, others were grey with white dots.  Today is finally here.  My appointment is at 4 this afternoon and I'll let you all know how I fare.  Thanks for all of your help preparing me.. 

If you were me, are there any questions that I should be asking my surgeon today?

Butterfly

Posted 5/13/2009 1:13 PM (GMT 0)

Hello There,

This is one of my first opportunities to share rather than to ask for help.  I am four weeks weeks out from a complete illeostomy and rectal removal.  My ostomy is not painful anymore, actually that stopped around weeks 2 to 3.  Honestly my rectal removal was tougher and am still on a wound vac as well as wet to dry depending on whether we can get a good seal around the buttocks.  Honestly I still am in pain in that area, and when the visiting nurse changes the absorbent material it is extremely painful, coming through the strong pain meds.

My strength is just coming back now in week four, but I still have fatigue and need a nap every day.  I do have trouble sleeping during the night, as my rectum (or was my rectum) hurts and I have back aches which I am told is common.

I don't tell you these things to scare you, but rather to prepare you for things that I wasn't expecting.  I have not been able to read anything meaningful other than magazines - I think because of the drugs.

I will be seeing my surgeon on Friday, again 4 weeks out - so I will update this when I see him.

I was told by him that I will be completely myself in three months.  I hope it comes alot sooner!

Good luck to you,

bob

Posted 5/13/2009 10:51 PM (GMT 0)
I met my surgeon today, and he seems very knowledgable and really nice. He spent over a half an hour with my husband and I. He doesn't want to do an ileostomy just yet, because he says that I will still have constipation if my small intestine doesn't work. So, he's ordering a test to make sure that my small intestine still works. If it works, he said he'll schedule surgery for any day that I'm ready, but if my small intestine isn't working, he said we'd cross that bridge, but we'll try to know something before Friday afternoon. Needless to say, I cried for the poor man. Whenever I hear constipation, it just hits a nerve with me and I'm really frightened, too, to say the least. So, I'll wait some more, but I think that I'm in really good hands. My husband reassured me, too, that he felt that I had a really super doctor.

Butterfly
Posted 5/24/2009 8:06 PM (GMT 0)
My tests came back and my smooth tissue of my rectum is no longer working and I cannot have a bowel movement on my own anymore.  I am scheduled to have an ileostomy on Friday.  I am nervous, but hopeful that after spending so much of the last few years with constipation, that I will feel much better after surgery.

 

I really like my surgeon and he's answered all of my questions.  So between him and this forum, I feel like I'm going into surgery with some knowledge of what's happening and how to expect to feel afterwards. 

 

Thank you all for your support and posts.

 

Butterfly

Posted 5/24/2009 8:12 PM (GMT 0)
i wish you all the best Lori, you've come a long way and you deserve a relief after everything you've been through. good luck!!
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