Getting either colostomy or ileostomy - Many Questions

[Elisha35]

I just joined this site & I hope this is where I'm suppose to be to post my "questions?" If not please direct me & where I should go to post things! Thanks!


Hey everyone!

I first want to say in advance "thanks" to any & everyone who may be able to offer ANY TIPS OR ADVICE! I have been diagnosed with Crohn's since 1999, now 35 years old, I'm a single mom to a little 4 year old boy! I've had been in SEVER & I mean SEVER PAIN with every bowel movement for a few years now, so finally about 2 -1/2 weeks ago the GI doc said "let's do a lower scope, just to see why things are so painful!" So I went in for the procedure, the couldn't pass the scope up the anus because the "stricture" is so bad, so they stopped & referred me to colon & rectal surgeons.
I'm having a CT this evening or tomorrow, but surgery 90% sure on the 25 Th (next Tuesday) to remove my rectum, anus, close the hole-and accordening to CT whatever else needs to be removed, also of course I'll have either colostomy or ileostomy .
QUESTIONS:
How long does a surgery like this normally take?
How bad is the pain after? Scaling from 1 to 10 ? Lol
If the "close" your behind hole, will it be stitched inside or out?
How soon after surgery can u put on "regular" cloths? And what type of cloths would you ladies recommend, like pj's with shirt/thin type pants or just long one piece gowns? Underwear?

Please tell me things that will be helpful while at the hospital, because doctor said a week to 10 days! I know my OWN pillow is a MUST! Lol
And iPhone

Are there certain things I should prepare here at home, for when I come back ? Like hmm where I'm going to dress/clean my incision? Maybe this would be a good excuse to clean off all my cluttered 8-9 ft bathroom counter top lol, like make a side just for where my "ostomy/ileostomy" supply's will be?
And I guess right now last thing I can think of (but I'm SURE I have 20 other questions) did anyone have a home health nurse come to their home after they went home, for a week-two-month, just to help them "adjust" & "teach" & "check" on everything? Cause honestly I don't think I can come home & just do it "alone!" I want a nurse & some "support" while I change the "bag" & "clean" everything ! Am I crazy!?

I'm more depressed & all ready feeling alone than ever in my life! I was home schooled from 6 Th grade till I dropped out, got a job worked a year, met my ex we were together 3 years (he owned a gas station, this was when I was really sick) but I worked "managed/trained" there the 3 years we dated & then we broke up. So I've had two serious relationships since then & had my son. But I am on disability, can't work & so I have "NO FRIENDS!" Honestly, I can't name a single female/male friend to call like normal friends I guess would (from what I've seen in movies) and talk about their bad day, good day or cry because a guy hurt your feelings . I don't have anyone to go out to eat with or shopping with. It always, always hits me HARDER when I'm in the hospital for some reason. I guess because I see other patients getting visitors, their phone is ringing or you pass by their room & it's so bright with color from the flowers someone brought them! Speaking of which that loser baby daddy, didn't even get me a single rose when I delivered our son! But I got the BEST thing in the world!!!
So I'm sure this will be a hard depressing hospital stay for me. If my oldest sister didn't live 20 hours away, I at least know she would fill in a gap/a void! But it sucks being THIRTY FIVE & not having ONE single friend! I mean damn everyone has friends. But I guess this is the price I've paid for being sick, on disability haven't been able to work in 7-8 years to be out in "public" to meet people! But THANK GOD I HAVE BOTH MY PARENTS & my 4 year old. My parents are getting old now & can't do what they use to do. I know my parents or one of them will be there when I go in for surgery (cause one has to put my baby on the bus for school) & be at the hospital as much as they can, but their aging sweet, loving hands ( 72 years old & 68 both in bad health) will be FULL seeing to my son while I'm in the hospital .
I'm sorry for writing so much! I'm sure no one has even read down this far anyways! Lol I'm just feeling all ready lonley, nervous, trying to figure out what to expect & wishing I had just "one" "true" friend on days like today & days like when I'm going to be in the hospital to come keep me company or call & ask how I am or surprise me by sending me flowers , like other friends do. But someone The Lord I guess one day will send a friend & maybe that friend will happen to be my future "husband" & step father to my little boy! Never know what The Lord has planned !

One more question & I PROMISE to SHUT UP LOL!!!!
Are there other places like this "discusion" group to post questions ? Because I posted a question a few weeks ago & only got it was either ONE OR TWO replies ONLY!!!!
And I've noticed with many other people posting questions here on "inspire" their question(s) don't either get replies at all or one or two.

PS: if anyone wants to answers my questions u can E-mail me @ [email protected]
I would be so grateful !!!! GOD BLESS & Happy holidays to everyone !

Elisha Foster/Cajun raging down in LoUiSiAnA! Yew haw!!! oo:oo:

 

[DJW]

Hi and welcome.

I'm sorry you're in such a tough place.

I'll do my best to answer your questions. I had that surgery many years ago.

In hospital:
YES - your own pillow is a must.
Basically anything you have that you can make your stay more comfortable (slippers, a robe, etc.)

When I had my surgery they left it open and packed it because their were so many fistulas and abscesses.

Pain: you'll out of surgery with a pain management pump you control or an epidural. I've had both and each worked well. Keep on top of the pain. You will heal quicker. Let the nurse know if you're in a lot of pain.

Walk a lot. Best way to get rid of gas pains.

Before you go in prepare some meals and freeze them. You probably won'tfeel like doing much that first week home.

Remember to walk a lot but keep in mind this is major surgery and it takes time to recover.

My ileostomy gave me my life back but it is a big adjustment. Be patient. Give yourself a year.

I'd suggest looking for an ostomy and/or Crohns & colitis support group in your area.
Check out the ccfa.com (crohns and colitis foundation of America)

Hope I haven't missed anything...I'm on a hand held device and its hard to go between posts.
Sending you my support.

 

[Muppetgirl]

Sorry you are facing a very big op. DJW has given you some great advice. Re the clothes issue, it can be quite an individual thing. Generally with abdominal surgery I find nightshirts work best while still in hospital. I prefer PJ's normally but I find that they rub against the incision(s). With underwear I stick to my normal. Again anything where the elastic sits close to you wound isn't great. A front fastening bra isn't necessary but can make things easier. General stuff: baby wipes come in handy for all sorts of things esp when your bed bound, earplugs are good esp if you don't sleep great, likewise an eyemask, download some films or books to fill the time and take your mind of things.

There is no harm in preparing living space if it helps you feel mentally prepared. I don't have a stoma, but with my catheter care, all the training was done in the hospital, with regular appointments afterwards. They won't discharge you until you are able to care for it on your own. But maybe people have different experiences for their area. I hope it goes well for you.

 

[UnXmas]

Hi, I'm sorry you're feeling so alone facing this, but you have your little boy!! And it sounds like your parents will do all they can.

One important thing: you should probably make sure you have help for several weeks after your surgery. You shouldn't lift anything heavy (including small children!), or do too much bending down.

The length of surgery and pain afterwards really is quite difficult to predict. Surgeons often don't know exactly what they'll do until they see inside and know exactly what is going on. It will probably be around a couple of hours. Pain levels depend more on what pain relief you take than anything else. One lesson I've learned the hard way: the withdrawal when coming off opiate pain medications can be worse than the pain you'd experience without them.

You can put on whatever clothes you like afterwards. Don't wear anything you aren't prepared to throw away. Stoma bags can leak, and it may take a few tries to find the right fit of bag, so don't be worried if you do have leaks at first. Your stoma probably won't start working until a few days after the surgery, but when it does, the output may be watery at first, which also makes leaks more likely at this stage. Having said that, when I first got my ileostomy, my stoma nurses were excellent and I had no leaks at all. But it's also common to have some bleeding from surgery incisions, and other things that may make sticking to wearing hospital gowns for a while a good idea.

Where I am - in the UK - stoma nurses sometimes go to patients' houses after they're discharged from hospital, but I was fine taking care of my stoma by the time I went home. I read a bit about taking care of stomas beforehand, but didn't really get much of an idea about how to do it until I was actually doing it myself, with the stoma nurses directing me. Then I picked it up very quickly.

You may feel too ill in the first few days after surgery to feel like doing anything much. So while books, your laptop or whatever device you use to get online, Ipod - all the things you might want to kill time with - will be useful later, at first just focus on making yourself as comfortable as possible. Nights can be difficult - ask for sleep meds if you can't sleep. I know some people find ear plugs and blindfolds useful in hospital too. Bring slippers because you don't want to walk barefoot on hospital floors. You will probably be on a soft or low fibre diet after surgery, and if you have an ileostomy, you will need to avoid foods that can cause blockages. Your stoma nurses should tell you what to avoid, but there are lots of lists online if you look it up - and just say if you'd like me to post a list here or if you have questions about specific foods. So if you want to take your own foods into hospital, check before you eat them.

 

[UnXmas]

Pain: you'll out of surgery with a pain management pump you control or an epidural. I've had both and each worked well. Keep on top of the pain. You will heal quicker. Let the nurse know if you're in a lot of pain.

Not necessarily. I didn't have either of these after my first stoma surgery. The medications you're given, the diet you're advised to follow, whether nurses will visit you, and many other things vary greatly depending on where you live, your surgeon's preferences and each person's state of health and the specific details of their surgery. My usual surgeon never gives me opiates because they slow the bowel, never gave me IV pain meds or an epidural. I had no pain relief after my first stoma surgery. When I had to have emergency surgery and had a different surgeon, I had a ton of different pain meds, including an IV with a button, but I found the withdrawal awful and I feel my usual surgeon's way is actually better for me.

Follow your surgeon's advice, and I would always let the nurses know if you are in bad pain, because it's important they know in case it's an indication something's wrong, but personally I think some pain is better than strong pain meds. If it's really severe, I'd ask for more pain relief, but besides withdrawal, painkillers can cause nausea, and one I was given caused me to hallucinate. Pain is not fun, but you will get through it and you will heal.

 

[washicd]

Hi Elisha, sorry for your situation.

I had a temporary ostomy about 14 years ago to give my colon a chance to heal. There was a real mess inside for the surgeons to deal with so I think they spent quite a bit longer on me than usual. I don't remember pain being much of an issue for me until they removed my epidural and even then I managed alright without any pain killers. Scale of 1 to 10 I'd say 3 or so. They did leave me open and also put some drain pads/tubes in me. Those can cause a sharp pain once in a while if you turn the wrong way (nothing wrong if that happens but it will get your attention for a second or two).

I did a lot of walking during my stay. I kept an eye on where all the unattended IV carts were in the hospital and exchanged them for the best available one whenever I wore one out or found a better one. The doctor will get irritated if he/she never sees you so don't stray for too long.

At home I kept my dressing/salves/supplies etc by the bed. It was easy and comfortable to change them there. Like Muppetgirl said, they will give you all the training you need to deal with your stoma before you leave the hospital and they gave me a supply of stuff to get me going. I had a little trouble protecting the skin around the ostomy area from getting pretty irritated. Maybe some on here can give you some clues on how to better prevent that.

One thing I liked to keep handy in the hospital was salt packets from the cafeteria though I shouldn't be recommending them. Don't forget your smartphone charger and earbuds and also a Bible and other books.

May God give you a speedy recovery.
Drew

 

[DJW]

Not necessarily. I didn't have either of these after my first stoma surgery. The medications you're given, the diet you're advised to follow, whether nurses will visit you, and many other things vary greatly depending on where you live, your surgeon's preferences and each person's state of health and the specific details of their surgery. My usual surgeon never gives me opiates because they slow the bowel, never gave me IV pain meds or an epidural. I had no pain relief after my first stoma surgery. When I had to have emergency surgery and had a different surgeon, I had a ton of different pain meds, including an IV with a button, but I found the withdrawal awful and I feel my usual surgeon's way is actually better for me.

Follow your surgeon's advice, and I would always let the nurses know if you are in bad pain, because it's important they know in case it's an indication something's wrong, but personally I think some pain is better than strong pain meds. If it's really severe, I'd ask for more pain relief, but besides withdrawal, painkillers can cause nausea, and one I was given caused me to hallucinate. Pain is not fun, but you will get through it and you will heal.

Ouch...you're actually the first person I've heard about not getting an epidural or pain management pump. My surgeries date back to the 1980's and I've always had one or the other.

 

[Nyx]

I never had an epidural or pain management pump either...I was on IV Demerol with Gravol - but it gave me such bad hallucinations that I got off of it after only 4 days. The pain after that wasn't bad at all and I was only given Tylenol 3's (which I only used once). I mostly found my stoma uncomfortable and heavy (both of which go away with time).

 

[DJW]

Wow. I've had Demerol in the past. I found it quite addictive.
Were those options discussed? Is there a reason you know of that they aren't given.

In all my years this is totally new to me. I'll count myself very lucky.

 

[Nyx]

My surgery was an emergency (I perforated my colon), so I was on whatever they wanted to give me when I woke up. I had never had any kind of surgery prior to this, so didn't know what the options were.

 

[UnXmas]

The pain actually wasn't too bad - I've had a couple of major surgeries with no pain relief. (I was given paracetamol, but I don't count that as it has no effect on me whatsoever.) Though I've had morphine after minor ones, because with those my surgeon wasn't worried about opiates slowing the bowel - there are so many factors involved when doctors decide on pain relief; it really does vary greatly.

 

[VeganOstomy]

Sending you a big hug @Elisha35. You are certainly among friends here!

I wish you the best of luck with your surgery.

Sent from my SM-N910U

 

[cleuger]

I just had surgery in September and am feeling really good. I have an ileostomy I also had a pain pump I loved it if I had pain I just pushed my button. I also had my rectum sewn shut I was the minority with this as I have no pain at all after surgery from my rectum being sewn shut. I dont even have phantom urges I see people talk about. I agree with every one that says they got their life back I feel so much better I have people compliment me on how much better I look as well. I have no regrets. As said in another post it is an ajustment. Good Luck to you. : )

 

[CAM477]

Ive had my ileostomy for 16yrs now & I'll be honest it took a little bit to get use to it.... ur hospital should have a stomal nurse who will teach you how to look after it..
I have good friends, loving family & supportive partner but still sometime I feel alone because none of them live like I do & I think most people feel that way sometimes. .
Im sorry to read that you don't have that support all of this would feel even more overwhelming. .
Someone mentioned support groups which is a gr8 idea, & u have already made a good start by joining here!
Here in Australia we have distrct nurses who the hospital sent to my home, to check on wounds & general health. Not sure how it works where u are but if u contact ur hospital they may be able to help...
Generally u attend some kind of pre-op clinic b4 ur surgery date so any questions/concerns have written down & take with u...

 

[CAM477]

(Sorry my lil man just sent Lol!!)
As for things to take to hospital... I say whatever is gonna make u comfortable, own pillow, pj's, slippers & toiletries is a must for me along with some loose fitting trackpants & I usually buy some cheap cotten knickers in the next size up, because u will be swollen around ur stomache.. with this surgery u will probably need some sanitry pads as bleeding will occur, my wound was sown up after but about a week post op I got a blood clot so the wound was left open & packed to allow for it to drain....
U may be offered a couple of different options when it comes to pain relief, I guess u need to work out with ur doc as to which would work best for u.. I had a PCA machine after all ops which worked for me...
Im sorry u have so much going on in ur head right now, hopefully for both u & ur sons sake all goes smooth & recovery is as quick as possible so u can get on with ur life... u never know who's waiting out there for u!
Sending best wishes to ya!
Good luck