Expectations for upcoming surgery =)

Hey yall!

I vistited my surgeon, met her for the first time today and scheduled my ileostomy surgery for November 19. She wants me at the hospital on the 18th so they can take extra blood bc she said the surgery is very bloody and she wants to have some on hand in case I need some. I think she made it sound worse then it actually is going to be. She said I would be quote "pooping my brains out" for the first 6 weeks and then after that it should go down to about 5-7 and then after a year it would be about 3 times a day. She said I could have my colostomy bag up to a year but most ppl here on HW only have theres for 2-3 months so Im just a little confused. She makes it sound like when I get my bag, my lifes going to be hell (she actually said that haha) She seems really funny and outgoing but the way she talks about surgery has me more scared than excited now.

Everyone thats had the surgery that Ive read about or talked to said they wish they wouldn't have waited so long so Im not really scared about whether Im going to regret it or not. If anyone has ANY suggestions to make this a little easier Id really like to hear from you =) I just want some advice on what to expect when I wake up from surgery..what life is like with the bag.

This may be a wierd ? but does the bag have any kind of odor to it? Does it stink or can you not smell it at all..id hate to go to school smelling like poo =( lol

Oh and she told me the total time Id be in the hospital is about a week if i have no complications and then a week after I get home but then after that I should be able to go back to school..so how long did you wait til you were able to do things again? Thanks much

Katrina

ok, it will not be hell with a bag, i cannot belive she even told you that!
having a bag is actually rather convenient.
it will not smell, unless like spognebabe said, it has a leak, then you will get a faint odor and you just go change it and all is well.
I do like she is saying though, and check like crazy if i smell a smell, lol.
When you wake up, it will be kind of weird, i looked down and iw as like OMG what did i do??? But then i realized i was HEALTHY!!! and i got over it. Be warned though, they are gonna put a clear bag on you in the hosptial and the stuff that comes out is probably gonna be this freaky color green and smell horrible! however when you get home you cna use your bags, that are not see through and once you start eating the stuff will get a more normal color and not smell as bad.

Katrina,

One thing I've learned about doctors is that they make things sound a lot worse than they really are. I don't know if it has to do with their fear of malpractice lawsuits, or if they just want to be heroes when everything turns out fine. My surgeon told me that I might not be able to pee after having my rectum removed, which didn't happen, so she turned out to be my hero!

The first thing I noticed after surgery was that the colon pain I had from Crohn's was completely gone, and that was the best feeling in the world! Having an ostomy is so easy, because you don't have to run to the bathroom anymore. It just does it's thing, and you empty the bag when you go to the bathroom to pee. I think if people knew how great they were, everyone would want one!

The bag is completely hidden under your clothes, so nobody will know you have one, unless you choose to tell them. I've worked at a job for almost 6 months, and nobody there knows I have one. They all know that I had surgery for Crohn's, but I didn't go into any further detail than that.

Since you have a month before your surgery, I suggest visiting the websites of the manufacturing companies (Coloplast, Convatec, and Hollister) and request free samples. That way, you can check out the products and be ready to try them out after you've had surgery. I use a two piece system from Coloplast, which means the bag is removable from the wafer. I would get the ones with the opaque cloth cover, so you can't see the contents, with the velcro opening at the bottom for easy emptying.

A good deodorizer that goes into the pouch is mouthwash. If you put a few drops of that in after each time you empty, you will not have an odor the next time you empty. The appliances are completely sealed, so there is no odor at all.

As with any surgery, it takes about 6 weeks before you have your full energy back. Some people bounce back quicker and some take longer. Since you're young, I think you're going to breeze right through this and bounce back very quickly.

I'm happy for you that you are on your way to being UC-free! Did your doctor tell you that surgery is a cure? Well, it is!!

Life with Crohn's was hell, and life without disease is a little piece of heaven!

Cecilia

I had a port for about 3 months. the first one got infected so thay swithed it to the right.Works great and it dosnt bug you as much as a pick line in your arm(I have one of them in my arm right now).The vains in my arms are shot so thay cant draw from there anymore and it hurts like **** when thay take it out of your hand so if thay can use your line to draw blood its real nice but some places wont draw from your line if thay did not put it in.When thay pull the tubes out its not to bad.Good luck with your surgery.

I was asleep when thay put the one in by my collar bone. I think the right name for them is a central line.I dont think they draw labs from this one to much but I cant remember.Thay draw labs from my port in my arm all the time.Both of them has to be placed by a x-ray tec.If thay will let you watch you can see it on a monater going into your vain.Thay will only leave it in if thay are really going to need it because it go`s real close to your heart and it can get infected.I got a type of yeast infection in my blood from the one thay put on my left side thay had to changed it to the right and then I was on a intravinias drug to clear that up along with the antibiotics I was already on.It did not hurt when thay removed it.I was in a hospital gown the whole time that I had it so I dont know if you can see it with normal cloths.I have the port in my Arm because after I was out of the hospital 2 months I came down with a infection in the disc in my spine.I have to give myself a infused antibiotic at night.I just got done with my last dose on friday after 12 weeks.I have to keep it for 2 more weeks so thay can keep drawing labs to make sure that it is all gone.I just know that if I take it out now the infection will come back and its not real bad to have one put in but I dont want to do it agean unless I have to.I have had two more surgerys since I got it and I have another in the morning so the nurces like it since it makes it easy for them to hook up the IV`s.But anyway it wont hurt when thay take it out. Good luck with everything and I hope I was of some help to you

Katrina,
I know UC and it was not my friend!! If I could have had the surgery about 20 years earlier than I did I would have saved myself a lot of misery, so I am excited for you. The surgery isn't that "cool" but the way you feel a few months later is sooooo much better. Listen, no more UC misery. The bag takes a little getting used to, but it is okay. If you want to keep it to yourself, no one needs to even know you have it. The odor can be controlled by what you eat and special drops. Learn to always have an emergency bag with etra supplies with you at all times. Think positive thoughts, like" I can do anything I set my mind to doing."
Jennie

Hi Katrina, this is bratcat's mom. I am sure she will answer at some point but for now I can tell you what I remember of what her surgery was like.

Bratcat didn't have trouble with her IVs. She had trouble getting bloodwork everyday. Her veins either hid or collapsed. One day she had 3 sets of nurses/doctors trying to find a vein. She was poked and prodded. They sent a doctor in to take blood from her artery. Not fun at all. After that we demanded that they send someone from phlebotomy. It's amazing how easy it was for them. No pain for bratcat either.

I will warn you that what she did hate was the heperin shots. They hurt and left black and blue marks. It was one of the few things she begged them not to do. One nurse finally suggested putting an icepack on immediately after receiving the shot. Not great but definitely bearable. This may help you.

It didn't hurt to have her drain tube taken out. The catheter bothered her a bit because of the awkward place it is. She said she felt it coming out but it didn't hurt. Oh and she got her period almost immediately after surgery (and it wasn't the time of the month). The nurses (and many on here) said that it is a fairly normal occurrence after surgery. The nurses were great and very helpful. Bratcat hated having that and the catheter at the same time. Once the catheter was out and she was able to wear a pad, she was fine. She also had an epidural and was worried that it would hurt coming out but she didn't even feel that when they removed it.

Bratcat chose not to even look at her bag or stoma until the day she was released and we had to learn how to change it. Up until then, the nurses drained her bag and didn't push her to do it by herself. She had the clear bags in the hospital (this way the nurses and doctors can see what is happening). At home they are opaque. Now it is pretty interesting to watch her stoma.

It took awhile to get the ostomy/wafer thing down well. She had a few leaks, it was a bit red under her wafer, we had to change it fairly often. We went back to the ostomy nurse one early morning and she explained what some of bratcat's issues are (not a flat stomach, somewhat flush ostomy, pointing down). And the stoma changes size (and shape) for the first few weeks. We now have a pretty good routine. I still help her change her wafer but it takes a very short time and usually is done twice a week.

Bratcat was in the hospital for 6 days. She had the whole summer to recuperate before school started. Her energy level was shot. She even rode the motorized wheelchairs at the stores. She still doesn't have all her energy back. Walking up stairs, standing for long periods of time are hard. But she is marching in homecoming on Saturday.

She didn't have laproscopic surgery. She has a full incision. That may have affected her energy level. Either way, she is glad she had the surgery (and she was in remission when she had it). She is looking forward to her step 2 on November 10.

I know she plans on trying to get in touch with you. Stay well, be happy.

Wow thanks bennie. When i had my first colonscopy I got reallly sick right after i woke up i spiked a fever but was freezing cold and shaking so the doctor thought he might have perforated my bowel because i was so full of ulcers =( Luckily he didnt but to monitor my they kept me overnight on the ped. floor. Both times Ive had to stay in the hospital I stayed on that floor and loved it. The nurses are so much easier with you it seems. But i was at a women and childrens hospital so its a little different from the other regular hospitals.
Im looking forward to not having anymore pain! haha I think thats the thing im most excited about. My energy levels decreased alot. Making my bed wears me out. Im still going to school (thanks to all the meds thats keeping me stable enough to allow me to go to school) I have so many stairs to walk so when you says Bratcats energy is still down it kinda worries me but we have elevators so it shouldnt be too bad on me =) Im going to go to school with the bag..a little scared about that. Just scared that it might leak or come undone or something REALLY embarrassing like that. But my dad always tells me not to live your life constantly asking yourself "What If" bc itll hold you back too much. Most of my friends know that Ill have a bag on. My best friend understands but her boyfriend is still confused i think about what it is exactly that ill have..thats guys for you haha
One thing that you mentioned was the heperin shots? Ive never heard of those. Do I HAVE to get them? And what are they for?
Oh..how long do you recommend I stay home after surgery before I go back to school? Id like to get into kind of a routine like you said before i go so that i dont have any accidents. How long did it take you and bratcat to get into a routine? And what kind of bags does she use? Sorry about all the ?s Im just getting a little nervous talking about it =/
Thanks a lot! =)

I dont' remeber the heprin shots hurt either, what does hurt is phenogren going through, but the absolute worse is having potassium run through you. which you should not have to have, unless you get really really dehydrated. If you do, ask for ice packs to put on immediately, and for pain meds, if you aren't on them still.

UC_at16 said...

Im going to go to school with the bag..a little scared about that. Just scared that it might leak or come undone or something REALLY embarrassing like that.

One thing that you mentioned was the heperin shots? Ive never heard of those. Do I HAVE to get them? And what are they for?

Oh..how long do you recommend I stay home after surgery before I go back to school?

Katrina,

I've had an ileostomy for two and a half years and have never had a leak or had a bag come undone, so please don't worry about that happening. The bags snap onto the wafer and then lock on, so they can't come off without unlocking them first. The wafers I use are Coloplast Assura Extended Wear, and they stay on for a week, even with showering every day and exercising several times a week.

For instance, I was at my 6 year-old nephew's birthday party yesterday, and it was a pool party. Well, I was the only adult who jumped in the pool with the kids and swam for a couple of hours. I got out, took a quick shower, and still had a great seal on my wafer, so the seal on these wafers are really good.

I've had heparin shots when I had a PICC line in my arm to keep the blood from clotting in the line. PICC lines are put in when you have small veins, so you don't have to get stuck with needles. They can draw blood from them and give you fluid and medicine, so I highly recommend them if you're going to have surgery or be in the hospital for any length of time.

As with any surgery, it's recommended to take 6 weeks off work or school to fully recover. Since you're young, you might be able to go back sooner, but you don't have to if you don't feel ready. Your doctor will approve for you to be off for at least 6 weeks.

When you say you get tired easily, have you been tested for anemia? When I had active Crohn's, I would get anemic and very tired. It's just a simple blood test to check your hemoglobin (red blood cell count). A 12 is normal for women, and mine got down to a 6 once. Taking a daily multivitamin with iron can help build it up over time.

Cecilia

yeah it does hurt worse the faster it goes in, but if they put it in slower it just hurts longer! it's a no win, lol.

Hi Katrina,

First of all let me tell you from someone who has never been in a hospital over night, hates hospitals and being your age surgery is definitely doable. Everything my mom said is true.

I went into the hospital the morning of my surgery. I was absolutely petrified but luckily one of the nurses that was their during the surgery was really great. I had an epidural and remember them putting it in my back and I remember it hurt but personally now can't even remember how painful it might have been. I also remember my surgeon placing a mark where my stoma would be. Next thing I remember is really fuzzy memories of I guess being in the recovery room. I must have been really drugged up since I don't remember much other than having problems opening my eye which they said was because it got so dry during the surgery. I had a bit of pain in my shoulder which was most likely gas but thanks to drugs I wasn't in super pain with my body. My muscles were definitely sore because the cut through them. I didn't look at the stoma itself until they changed the appliance before I got discharged and only looked a little at the bag itself until that day. I had a full incision which went just above my belly button down about 10 inches. I had wicks in between some of the staples which were there to keep out infections and those were very painful/uncomfortable to take out. Like my mom said the heperin shots were the worst and I still have the bruises (which don't hurt anymore) on my arms and thighs.

Don't worry about the catheter or the drain. They are both but in when you are asleep. I was nervous when the went to take both out but the drain just felt like a quick pull of my skin and the catheter was a bit uncomfortable when they were taking it out but it went away fast.

I couldn't wait to go back a few days later to get the staples removed since those were the most annoying things in the world (besides UC). As soon as those were removed (which was no walk in the park since I had 20-22 of them) I felt so much better.

I did not have much energy in the beginning and because it was summer (surgery was July 3) I did not push to get back to much right away. I did go to my friend's party at the end of July and although I sat almost the entire time I had a great time. My friend's are very supportive and all wanted to visit me when I was in the hospital and first came home. By Mid-August (about 7 weeks) I went back to work at the library. Since it is major surgery you are not suppose to do heavy lifting for 6 weeks and I work in a library as a page shelving books so I have to be able to lift. My job was very supportive and told me to take it slow and take breaks often. By the way I work 10 hours a week but I think I started with 5-7 hours and slowly upped it.

To answer your question about food. I was on a liquid diet for a day or two and then put on "restricted diet" basically easily digestible foods (no salad, nuts). I think I ate salad about 4 weeks after even though I think I was suppose to be on the "restricted diet" for 6 weeks. I really was not in the mood much for anything for quite a few days after my surgery and also every time I ate when my stoma output it had this burning pain feeling which after a few weeks went away. I am pretty sure that the pain was from muscles trying to repair themselves. By the way I had Honey BBQ Frito twists today and those are amazing so when you feel better enough you have to try them

Changing my appliance in the beginning was such an experience. We read that eating marshmallows helps slow down output so up until about a month ago I ate 4-5 big marshmallows. I try to do a change in the morning when everything is less active. I stopped eating marshmallows because I really dislike them and after a while the thought of them made me nauseous to the point that now I can't look at marshmallows (weird huh?). My mom helps we do a change and we really got it down to a science now. It used to take us an hour or so and now it takes about 15-30 minutes, since I shower now when I do a change. I lay down on my bed and take off my wafer and then run into a shower which is usually quick. I wash the area around my stoma and usually scratch all the places around it that always seem to itch when I know it needs a change. Then while I lay on my bed drying the area around my stoma my mom cuts and puts paste on the wafer. I use a little stoma powder and then I stretch my skin and my mom lays the wafer on and I push it down and put on the bag. I don't know what I would do if I had to do it myself.

I use the Hollister 2 piece opaque appliance. They have the bags that a the Lock and Roll close and the ones with clips. I have tried both but with the Lock and Roll I worried that I would turn the wrong way or get the bottom caught on something like my pants and would open so I use the clips. Hollister is the only ones I've tried other than the nasty one I had right after surgery. I hate having anything against my skin (like bandaids) so the hospital one was horrible and the Hollister was a bit better though I hated it in the beginning. I also where an ostomy belt all the time with my bag because my stoma almost sits under my skin so the belt helps push it up. The only time I take the belt off is when I shower and I think I have like 5 or 6 of them so I go back and forth between them. I didn't have a problem having my bag hang out over the summer because I figured who do I really see when I'm at the supermarket and such. Now that I'm in school I try to keep it hidden for the most part. Some people on the forum say they stick it into their underwear but I don't under stand that. I leave my bag out under a long babydoll shirt or tuck the tail into my pants and fold it over beneath my shirt.

I have had several leaks but luckily none in school. Most happened right after I did a change and I must have not have warmed the wafer enough. I did have one leak that started at work (I had done a change that morning) and I left to change it and my job was very understanding.

I'm excited that you are having surgery to rid yourself of UC plus it is very close it is 3 weeks today that I will be having my reversal and I am absolutely excited. I actually have a pouch test today so I really have to get to sleep since it's after midnight and I have to get up in few hours.
If you have anymore questions feel free to ask.

-Bratcat

honestly, i think that i would put off the fritos for just a little while, lol. They might cause some bad bad gas that soon after surgery. Wait a week or two, don't worry you will be able to eat plenty of them. Don't be like me though, and eat whoel bags of stuff you haven't been able to eat!
Bratcat-I always try to change my bag when i DONT have to go anywhere like work or out for a long period of time that day, or i change it at night. That way if it leaks it is while i am at home. I know it sounds hard, but once you do it by yourself, it really isn't that hard, i could not for the life of me figure out how a person was supposed to do this by themselves, i just didn't htink i had enough hands. But out of necessity one day, i had to learn! and it actually took me less time to do it after i started doing it myself! Including applying the pastse, putting my pads down on the floor, cleaning around the stoma and cleaining up my pads and trash and stuff after, it takes me 8 minutes to do a change. Less time if i haven't just gotten out of the shower, cause it's already dry. I don't know how you can stand having your bag hang free like that though, oh that drove me crazy until i figured out how to tuck it up, lol.
Spongebabe-I had that burning thing sometimes too, and just chalked it up to weird, but the acid thing does make sense. Cause i know like, when i eat a lot of fresh pineapple, that hurts coming out! Doesn't stop me from eating it though, that stuff is just too good!