Saying goodbye to colon (11 days to go)

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littlefreebird

littlefreebird

Joined
Jun 27, 2011
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saying goodbye to colon (11 days to go)

was finally given a date for admission- monday the 25th july..so i have about 11 days to go.
haven't been very well, have lost a lot of weight recently, i've just weighed myself and was shocked to discover the needle slightly under 6 stone (39kg) - i'm 5ft 1. i hope by 11 days time i havent lost too much more.
my appetite hasn't been great but it has been worse, i'm trying to eat little and often as much as i can. i'm going to the toilet at least every hour and sometimes pass nothing other than a little blood. i'm pretty much house-bound and just sleep constantly. i take co-codamol and tramadol for pain.

i suppose if i was to look at the positives, being ill at the minute is making me look forward to the surgery more. i do slowly feel my life slipping away from me a lil more everyday.

i'm on 8 weekly remicade infusions and my last infusion was due 2 weeks ago. my surgeon basically said i wasn't allowed it because it will lower my immune system too much for surgery, but he didn't give me an alternative hence why i am currently flaring and getting worse by the day...i was put on a 5 day course of 30mg steroids last week so that has finished now too.

my crohn's is pretty low down in the colon and rectum which is why i'm getting a lot of painful swelling 'down below' and the recto-vag fistula has definatley got worse. feeling pretty rotten.

i'm getting a full panproctocolectomy and ileostomy so i've been looking into coloplast and holister products online just to familiarize myself with them, it's still all pretty crazy, don't think i've got my head round it fully but maybe you never do? i'm just kind of going with it.
i'm still looking at belts. i'm liking the look of the stealth belt so far. (stealthbelt.com).
 
I hope it goes well and it does what you need it to. Try to keep your nutrition up, you'll need it (Ensure is your friend about now).

Hope you have a quick and complication-free recovery. I think you're going to be feeling a lot better!
 
I have the stealthbelt and it really didn't work for me at all!! It's a great concept, but you have to put your bag on sideways, and I found the stool just gathered around the flange and that causes leaks. I find with the bag, gravity is your friend, and having it hang down the leg is much better.

Good luck with your surgery!! I hope you feel as good as most of us ostomates do after your surgery.
 
Good luck with the surgery hon. I know it must be incredibly frightening. And all the bags and systems seem overwhelming. You will have a stoma nurse to help you out, and of course we will do what we can here as well. As hard as it is, try to stay positive. Try to look at every little tiny good thing, to keep yourself going.

You will be ok, and you will come thru this. You are never without support!
:kiss:
 
Good luck to you! I'm sorry you have to go through all of this pain and I hope the surgery puts you in remission.
 
I hope your surgery goes well and you are feeling great soon! I'm sorry to hear you have to go through all of this misery while being off of your remi infusions.

I am fairly new to the ostomy world (only a few months) and in the weeks leading up to my surgery I was positive that if I ended up with a bag after surgery (he wasn't sure whether I'd need one or not) that the stealth belt would be the first thing I purchased. In hindsight, I have to agree with Nyx, a sideways bag means that all of your output is sitting around your flange just working on that precious seal you have there...

Once you are healed you might want to try instead:
a) a snug fitting (not skin tight) tank under all of the clothes that I can use to smooth out the look of the bag, worn under a shirt like this:
http://beckersurf.com/images/products/SKU_T_10JD02MDOVSWC.jpg

b) if you are wearing just a regular t shirt, the belly band is a great tool to smooth out the look of your bag whilst giving you something to tuck your shirt into the bottom of as a bonus.

c) by far, my favourite summer style where I don't have to wear any under layer and my bag is completely undetectable is this
http://www.bing.com/images/search?q...DCC8082B20398A56323D1BA4C&first=0&FORM=IDFRIR
I hope these links show up properly, I haven't tried posting a link in this forum so we'll see...

Good luck and feel better soon!
 
thanks everyone for your words of support and encouragment, its very much needed right now.
thanks for the advice on the stealth belt, that absolutley makes sense what you say about the bag sitting sideways, im glad i didn't waste my money.
they are gorgeous tops, i guess i'll just have to adjust my wardrobe slightly i do wear lots of floaty smocks and blouses anyway, hopefully i'm still able to wear all my skinny jeans though cause they are something i wear everyday.

how long do you think it will take me to feel pretty much normal again?

i'm so scared of how long recovery will take and all the pain that is to come.

i was recently put in touch with a lady over the phone who had an ileostomy done 30 years ago at the age of 18, she wasn't negative as such but she was very honest and i left the conversation feeling more scared than before i had spoken to her. she basically told me that the pain the first time food goes through teh ileostomy is excruciating.
she told me that what i have been told about being able to basically eat what i want and have a normal diet is a lie and that there are many things you can't eat. for example she said the last time she ate an orange the pulp gathered into like a hair ball and blocked her ileostomy, pain was terrible and she ended up in casualty.
she said i'll never be able to lift anything heavy ever again. including heavy shopping etc. this has scared me cause obviously i want to have children one day, does that mean i can't even lift them?
she said leaks dont happen too often but when they do its very embarrassing, it can happen at the worst time. for example she can start leaking over her clothes in the middle of a shopping trip. and she woke up one morning with her bag stuck to her husbands back and her stools were everywhere. doesn't sound very nice, why do these leaks happen? how will i prevent them? or are they inevitable now and again?

she obviously didn't mean to scare me, just give me an insight into life with an ileostomy, but the insight is pretty scary to me, i was under the impression that the ileostomy won't hold me back in anyway, so my stoma nurse told me anyway. but it turns out apparently i can't eat fruit etc. and a lot of other foods, i can't lift anything heavy, can't drink anything fizzy, be prepared for embarrassing leaks at all times, and be prepared for an imense amount of pain after surgery.

this lady was very nice don't get me wrong and shes also a general nurse, is what she said correct though?
 
The one problem with everything 'that lady' said to you is this...we are all different!

If you want to eat an orange after you've healed up...try it! If after 6 months you want to lift heavy shopping...try it! There are plenty of us that have had leaks, and yes, I would say at some point, it probably is inevitable. With the best systems, the most experience, yes, at some point, it will happen. Probably more than once. So what!? We clean up and move on! I can tell you I'd prefer a little leak than what I had before if I couldnt find a loo.

Most people on here are leading perfectly normal lives, in fact better lives than they did pre stoma. As for feeling normal, it took me about 3 months to feel almost right again. My surgery was open, so it took longer to heal up. I'm also alot older than you.

Dont let one person scare you. Perhaps speaking to some other people will help?
 
I agree with what Misty said. I took about 3 months to feel normal again too...and I also had open surgery so that makes a big difference in the healing process.

I have 2 stepkids and I can carry the 5 yr old around without a problem (I don't want to, but I can....lol). I lift the groceries all the time. The only things I don't really lift are big things that would have to rest against my stomach at the front, like big boxes. If I can carry it off to the right side, then I'll do that.

I eat whatever I want. And like Misty said, try it! If it works, yay! And if it doesn't then don't eat that thing again. It's trial and error for most of us.

Leaks happen, and we take care of it and move on. I think they happen more for ileostomites, but that's because of the consistency of their output. Get the appliance that works for you and that should cut down on leaks...again, trial and error.

I've to change very little of my lifestyle to deal with having a bag. I do most of things I used to do, and some things I'd never have considered before I got the bag. I've actually found it very freeing. I just got back from a week camping. I'd never have done that pre-Oscar.

Good luck to you!
 
I think Amy is busy leading a wonderful life post surgery, or she'd be on here telling you how great it is! CDDad is also a wonderful inspiration. But they're BUSY leading great fulfilling lives. Dont worry, they'll pop in to answer as well!

I'm busy working full time alot. Took me about 8 weeks post surgery to go back to full time, and I will tell you it was too soon. If you take care of yourself after surgery, and be patient (difficult!!!!) then you will heal better and have less complications. You WILL be ok. But I sure understand why you are frightened. We are here hun.

:kiss:
 
I'm due the same op in October, so obviously I can't speak from experience, but what that lady said does seem a bit scary! I keep thinking though that she had hers done 30 years ago. That's a really long time. Think how things have come along since then. There are newer surgery techniques and I'm pretty sure that appliances etc have come a long way.

For some reason I keep comparing it to periods. Older women in my family tell me stories of when they used to have some kind of belt thing to keep their pads on and now we have a lot more discreet pads and tampons etc. Things change over time and I'm sure we're lucky to have the support of specialists and stoma nurses that may have been around 30 years ago. Of course, I could be completely wrong!

Anyway, I hope your op goes ok. I'm interested to see how you do! :)
 
thanks everyone again for your replies, feel a lot better now. think just hearing one person's bad experience threw me off a bit.

open surgery i think that's what i'm getting? the surgeon said i will have a staples 10inches down my middle and then obviously stitches down below, does that mean it's open surgery? he told me they do keyhole surgery only for cosmetic reasons (dunno what he was trying to say about me lol) but it takes longer, so i'd be on the table longer so the risks go up. that's the main reason he gave me really and well if the open surgery is easier for them to do then i guess i don't mind doing it.

8 weeks post op does sound pretty soon to return back to full time work, luckily i got laid off work a month ago so i'm able to totally relax and not have to think of taking time off work but obviously i wanna start looking for another full time dental nursing job as soon as i'm fit to.
thought of another question...at my job interview, do i have to tell them about my ileostomy? would it be sneaky of me not to? or is it none of their business?
 
littlefreebird said:
thanks everyone again for your replies, feel a lot better now. think just hearing one person's bad experience threw me off a bit.

open surgery i think that's what i'm getting? the surgeon said i will have a staples 10inches down my middle and then obviously stitches down below, does that mean it's open surgery? he told me they do keyhole surgery only for cosmetic reasons (dunno what he was trying to say about me lol) but it takes longer, so i'd be on the table longer so the risks go up. that's the main reason he gave me really and well if the open surgery is easier for them to do then i guess i don't mind doing it.

8 weeks post op does sound pretty soon to return back to full time work, luckily i got laid off work a month ago so i'm able to totally relax and not have to think of taking time off work but obviously i wanna start looking for another full time dental nursing job as soon as i'm fit to.
thought of another question...at my job interview, do i have to tell them about my ileostomy? would it be sneaky of me not to? or is it none of their business?
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Uh, don't know what that doc is on about. Laparoscopic surgery may take longer, but you get a smaller incision which means recovery is less painful and the recovery time is significantly diminished. So it's not "just for cosmetic reasons."

I think it's probably none of your potential employer's business, unless it would directly affect your ability to do your job (in this case I do not think it would).
 
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I'd say laproscopic is the way to go.
I'm 3.5 weeks post surgery, I'm pretty sure I could go back to work if I wanted to, but screw that. I have almost a month left of medical leave. I'm going to enjoy myself.
 
vonfunk said:
I'd say laproscopic is the way to go.
I'm 3.5 weeks post surgery, I'm pretty sure I could go back to work if I wanted to, but screw that. I have almost a month left of medical leave. I'm going to enjoy myself.
Click to expand...

Nice! I got 120 hours of "paid time off" this year, but most of it was used up being sick BEFORE the surgery, so I went back pretty quick.
 
I wouldn't mention it during the interview, I would tell them afterward only if you needed to. Otherwise it's nobody's business unless you feel like sharing it.
 
jason was yours laproscopic then?

why the hell am i not getting it done this way?? it sounds way better, ooh i am so phoning him tomorrow!!!!
 
littlefreebird said:
jason was yours laproscopic then?

why the hell am i not getting it done this way?? it sounds way better, ooh i am so phoning him tomorrow!!!!
Click to expand...

Just so I'm clear, laparoscopic may not be the best/most appropriate option for you and your situation. I just wanted to say that his statement "just for cosmetics" is inaccurate. There is a definite trade off and your surgeon may have weighed that for you, or it's possible he is just more comfortable doing open surgeries. But you should definitely discuss his reasoning. I feel like he has been dismissive and you shouldn't put up with that, this is a serious, major procedure.
 
Yeah I'm getting mine done laproscopiclly. I was told the op would be about 4 hours but I'm generally very healthy at the moment so maybe that's why.

He said I should be able to go back to work about 2 weeks after but I can work from home so I don't have to worry too much about driving. I think it would be tiring.

Also you don't have to tell them at your interview. I had my interview in feb knowing I might have to have this surgery and didn't tell them. Although I did tell them about my crohns which actually turned out to be an advantage for me. If you would feel more comfortable telling them then just turn it all into positives... How it makes you more determined to do well in life etc. Good employers really won't mind. My employer didn't even mind that I go admitted to hospital 2 weeks after I started the job! She was really nice about it and paid me in full too which I really wasn't expecting!
 
Some hospitals don't have the means to do a bowel surgery by lap. Where I live they use lap for things like hysterectomies, gall bladder, joint surgery, etc. but there was no one who was trained to do bowel resection by lap. Maybe because its just a really "involved" type of surgery???
 
Mine was laproscopic. The surgeon told me she would try laproscopic, if there were complications or a reason that she couldn't, she was going to open me up.

Open surgery is roughly 2 hours, lapro is 3.5 to 4. The recovery time for laproscopic is much faster, as the incision aren't as large. The risk of complications during recovery is less than open.

With that said. My surgery was planned almost 6 months in advance, I was in medication induced remission and my health was the best it had been in about a year. No abscesses or fistulas and my surgeon's speciality is laproscopic gastro surgery.
 
Hey LFB

My story pre-surgery was very similar to yours---trying to eat but losing weight. I'm 5'5" and weighed 48 kilos when I went for surgery. I had lost almost all muscle which was concerning to me and my GI. I tried to get myself as healthy as possible before surgery by drinking lots of Ensure (the extra calorie chocolate tastes waaaay better than the regular chocolate) and I quit smoking a month before (how I miss it!), etc.

I also had to quit Remicade and the surgeon asked me to stop taking my Imuran. For the month prior to surgery, I was only taking fish oils, multivitamin and Vitamin D. Not being on meds didn't make much of a difference to me since I was having abdominal cramps and running to the bathroom 20+ times a day. I was on antibiotics since I had abscesses, a recto-vaginal fistula, and perianal fistulas. Like you, I felt life to be slipping away---all I was doing was sleeping, going to the bathroom and drinking Ensure.

My surgery was on May 19th. The surgeon had warned me that it might be open surgery, but thankfully, he was able to complete it laproscopically. The surgery itself went well, and my stoma was well formed.

Unlike some other folks, I did have some complications, and I'm writing in part to let you know that the complications aren't so horrendous that you won't be able to endure them. I'm someone who is terrified of needles (scared enough to have sought help through hypnotherapy, behaviour modification therapists, etc.), and I can't remember how many times I'd be poked by a needle a day. Some of my complications included a large amount of post-surgical fluid being left behind in my stomach that got infected (and refused to come out), a perforated bowel because the radiologist was an incompetent boob, and my stitches (staples) were removed too early and I'm still having to pack the area because it's open. I was not able to start solid foods for about 15 days, and in the process, lost more weight and was down to 42 kilos.

My 6-12 day stay in hospital turned out to be 40+ days. It has been just over two months since my surgery. My stitch area is a couple of weeks away from closing (yay!), the fluid has almost all drained out and the infection from the fluid is gone (and I'm finally done the antibiotics!). I haven't had to take anything stronger than XStrength Tylenol for the past few weeks for pain, and I'm moving around a whole lot more (my abdominal walls are still a bit sore). Overall, things are going really well now.

Unlike the woman you spoke to, I have NOT felt any pain at all when eating. Granted, I've been on a low residue diet for the recommended time (the first 6-8 weeks), but I also cheated and ate burgers and fries during this time as well. I'm adding more foods with medium fibre in it, and no painful outputs. I've been eating curry since early June (no chilli peppers, though), and now eating curries with coconut milk to put on weight!

I'm sure I'll come across foods I can't eat that may cause a blockage. I'll learn. I'm sure my bag will leak when I'm in public, but I'm ready for it. So far, in the past 9 weeks, my bag hasn't leaked. I was told not to bend or lift things for the first three months. While I could understand why they said it, I'm finding more flexibility in my body now that some of the pain is wearing away. I'm sure I'll be able to lift the cat and send him outside in a few weeks! :)

My surgeon has told me that I need to seriously bump up my calories (he suggested 3500 calories a day) and protein intake (for healing). My partner bought me some protein/calorie booster drink used by bodybuilders from the health food store (after consulting a nutritionist) and I'm drinking that everyday. I'm almost 46 kilos now!

So, don't stress out too much about the recovery. It might not be the easiest thing in the world, and it will be a little bit of a 'detour' in terms of the amount of time it takes to heal. But I really do think you'll be okay. The joy of not feeling pain or racing to the bathroom already gives me such relief!

Wishing you lots of wellness for your upcoming surgery,

Kismet
 
My surgery was laproscopic - definitely the way to go. I think my surgery lasted about 5 hours and the hospital recovery went good - in on Monday morning and out on Saturday afternoon. Like many others, I was in very poor health going into surgery. I had been in and out of the hospital a couple times due to malnutrition just a couple months prior to surgery. All that being said, I think only 6 days in the hospital recovering was pretty darn good.

Recovery at home for me was rocky at first. Dealing with the "new equipment" had its challenges, but forums like this one and some online chatting made it much easier. I under estimated the emotional aspect of it all. After a couple weeks at home, it all turned for the better. I was off all the drugs, didn't have go to the restroom every 10 minutes, and started to figure out how to replace my stoma equipment without making a huge mess. I started working from home in week 4.

I hope your surgery goes as well as mine!
 
i'm phoning my surgeon tomo and asking about getting the surgery done laproscopic and say i'm really not that happy of the thought of open surgery now.

i need better reasons as to why he won't do this for me. i'm young, i'm 21 i wanna go back to work as soon as possible and get my life back that i have not had for so long. now that i know this surgery can be done that will involve a quicker recovery time i really want it!!

i will feel gutted if i can't have mine done laproscopically now. 7 days left til my op. i hope its not too late! :(

will phone tomorrow. my mom really isn't happy now since i told her about this other surgery. i just feel if i have to go through all of this, why can't i just have the option that makes it that little bit easier on me?

thanks thesugardog for sharing your story, its made me feel abit more hopeful to know your surgery was done whilst your health (like mine) wasnt at its best.
 
Terriernut said:
I think Amy is busy leading a wonderful life post surgery, or she'd be on here telling you how great it is! CDDad is also a wonderful inspiration. But they're BUSY leading great fulfilling lives. Dont worry, they'll pop in to answer as well!
Click to expand...

I'm here! I'm here! And YES - life is GRAND!! I feel so good - I had honestly forgotten what it was like to feel normal! Once I found the right appliance for me (my stoma dips down and to the right, so I need a convex flange), it was all systems go!! Knock wood, not a leak since I switched to convex. But I am always prepared just in case!

I will ditto what Misty said - 8 weeks is still very soon to go back to work full time. It took me about 3 and a half months to fully get my energy back. If you can take 3 months before you go back full time, do it. Do not underestimate how much open surgery zaps your energy and your general constitution. Don;t overdo it! Get plenty of rest and take it easy!

But when you are fully recovered - I hope you feel as great and are as happy as I am. Bag schmag. I don't even think about it most of the time. Bilbo has given me my life back!

Good luck!! - Amy
 
Good luck on your surgery! Mine was laproscopic too. Not everyone is able to have it though, so your dr. probably has a good reason for not doing it. I went back to work full-time at 8 weeks. My job can be dangerous at times and I felt completely comfortable going back. Everyone is different! You will know when it's time. Enjoy the rest while you can. As far as eating, everyone is different. I can't handle most fresh fruit and veggies well. I get blocked. Not always. I just have to be carefull. If I drink red or orange fizzy drinks on a empty stomach, it goes right through me! I lift lots of heavy things with no problems. I'm very active and forget I have it at times. I had one leak and it was at work. Luckily I was able to take care of it without anyone knowing. It was my own fault and my wafer was too big. Once you find the right bag system, it becomes very routine. I promise you will not have to live in big baggy clothes for the rest of your life! You will find very cute clothes that fit your style. Good luck and we all look forward to hearing how you are doing post-surgery:)
 
Hi,
I had my surgery on March 31st. (Subtotal colectomy with ileostomy)
It was done laproscopicly,(warned it would be open if there were problems) there were no problems with the surgery itself but I got post op ileus and was vomiting up green fluid for days, ended up in hospital for over a month, then after being home for 10 days I got re-admitted for another 8days. My nutrition was really bad. I can't have ensure because of reactions to some of the ingredients, they tried to tube feed me but I reacted to that too (more vomiting and pain) so I was on TPN for a while.
Even though things didn't go smoothly for me I have NEVER regretted getting the surgery at all (yet?). I found it great going from having to go to the loo every hour (24/7)before surgery (and dragging an i.v pole) to not having to get out of bed after surgery for a day (thank you catheter) There was no pain when my ileostomy started working. I can eat so much more things now than before I had surgery. I just try to remember to chew food well just try a little at a time when trying new things. Im enjoying eating heaps of fruit and veges for the first time in ages, and I'm taking hardly any meds now. I have had a couple of issues with leaks but not in public so far. I learnt fast that convex was the way to go for me.I think you learn fast what most likely causes the problems for you individually and make sure you are prepared.
All up I coped with the whole stoma/surgery thing a lot better than I thought I would, even though there were a few complications.
You might be suprised how much you can handle. I hope the surgery gives you some relief from the pain etc.
I hope you are able to get yours done laproscopicly.Keep us up to date.

good luck

M
 
thankyou all for your replies, i'm glad you are all enjoy your new lives!! i can't wait to join you!

i phoned my surgeon this week and we had a chat on the phone, i told him i wasn't happy about having open surgery as i've read about lapro and if i was to get open surgery i'd feel like i was getting the raw deal compared to other people who have lapro. he said he could do it lapro if i really wanted but i'd have to wait until september. i told him i'd be dead by september! and if he was going to delay my surgery then i'll just get open surgery but i'm not too happy about it. he said he'll talk to me again about it when i come in. 2 days to go!! i'm being admitted on monday the 25th and the surgery will be the next morning!
i'm currently just over 5 and a half stone 37kg and there is no way on earth i would make it to september!! i haven't eaten in 2 days due to the pain!
 
Good luck!!! Shame you can't have the lapro but it's better than waiting if you really need it.

I hope it all goes well :)
 
Open surgery isn't that bad. I had it and had no problems whatsoever. The recovery time is longer, and you do wind up with a pretty cool scar, but for me it was worth it. Just remember to take it easy after your surgery and don't try to do too much too soon.
 
Hi, I had total procto collectomy laproscopic and was out of the hospital in 5 days. Like you, I lost tons of weight before surgery and was 140 lbs when my normal weight is 180.
I am 5-10.
Everyone is different, and like Nyx said you will find if you can eat everything within six weeks after surgery. From my own experience, I can eat everything, and now, exactly a year past surgery I weight 185 lbs, and do everything. Swim, scuba, horse riding you name it. Yes, from time to time I do have a leak but you deal with it and move on.
As far as the bag, I tried all brands and I use Convatec .

Please don't hesitate to reach out with any question.
A major factor is your determination. For me Nyx and Cddad, joe and Nicole were the best one can ask as they helped me through my ordeal
 
everyone seems to be having lapro, since my surgeon didn't really give me a good reason why i couldn't have it done i feel quite hard done by! his reason on the phone was, 'i just thought with you being young, you'd heal quickly from the open surgery anyway, is it just for cosmetic reasons you want lapro?' i was like 'erm..no i would like to have a shorter recovery time with less pain and chance of infection!!

my choices are delay surgery or just get open surgery in 2 days. seeing as i'm just not well enough to wait i'm opting for the surgery on tuesday but again, i'm not happy.
 
I just had this surgery 3 weeks ago, and had it done full, not lapro. I didn't expect to have it lapro as I knew it would be very extensive, I assume they would have done it lapro had they been able to - the surgeon was a head of a department and I am sure knows how to do lapr. As it was - it took five and a half hours with open surgery.

Good luck and let us know how you get on. I was talking on the phone a few hours after the surgery, and although I have had a few hitches here and there, things are starting to look brighter.
 
thanks for your reply hopeful, so its not as bad as i think? i'm scared of pain people talk about i heard it might take a few weeks to even stand up straight especially whilst the staples are still in.
my partner wanted to know if it would be better me sleeping downstairs (as my bathroom is downstairs) or do you think i could climb the stairs ok once i'm home?
:) thanks, omg after tomo i'll be going in!! aaahhh!!
i'm so glad you're starting to feel good, will be amazing to live without the pain :)
 
The post surgery pain is not a big deal as you have a pump attached to you, whenever you feel pain you press the button and it pumps morphine into your blood stream.

The pain from the staples was rough for me - especially two of them - they were sitting on a nerve and boy was that painful. I have a neighbor an elderly doc - and he took them out a week early - and that provided great relief.

I was able to stand straightish about 2 weeks after the surgery. I climbed stairs about 8 days after the surgery - that didn't seem to be a big issue. I was frightened I would never stand straight again, but that fear is now gone...

chew chewing gum to get your bowels working faster after the surgery. There are a few studies on it - and my doc encouraged it - my bowels woke up 3 days after the surgery. There are colicky pain first couple of days after the bowels wake up. The hospital offers anti-spasmodic medication for that.

Take a comfortable pillow to use, and to sit on. I saw up on a chair for a few hours on day 2, but I would recommend a comfortable pillow to sit on for a few weeks. Once the stitches get taken out its better, but I would classify sitting as slightly uncomfortable, not really painful.

Good luck!!!!!!!
 
They probably wont let you go home until you can climb the stairs. I went home after nine days, they took my staples out right before I left hosp. I was fine on the stairs. But I certainly didnt fly up them! Slow and easy I went!

When I went home all I had for pain killers were paracetamol and codiene if required. I was fine with codeine just for night time. Only because I couldnt sleep due to the pred though!
 
Well on the lapro subject, the stoma nurse told me that it's very involved to do a procoloecomy this way and most gi's prefer to do it open as it's much easier. Maybe your GI doesn't feel comfortable or even properly trained to do it via lapro yet?
 
My doctor said he doesn't think that recovery time is any different for open than with lapro. He said the only reason there is a higher risk of infection is because there is more area to become infected. Even with lapro they still cut through a lot of muscle and nerves. I still have numbness in my lower abdomen and inner thighs.
 
really kris? will that get better over time or is that permanent. that was another thing my surgeon said, he said because i'm young open surgery recovery will be quick.
:) thanks for your comment, i'm glad to hear all your opinions, i feel open surgery may not be too bad afterall.

I'M GOING IN, IN ABOUT 24 HOURS!! AAAAAHHHHHHHH! lol going in tomo mid-day then the actual op is done the next morning, which is quite soon, thought they would have at least told me to stop eating etc. by now.
 
Good luck!! Try not to worry too much....you'll be fine. And with the good drugs, you won't be in any pain....lol
 
Good luck!

I see in your sig you say you're living in Ireland, if you don't mind me asking what hospital do you attend? Is it in Dublin?

I'll obviously understand if you don't want to answer that. lol
 
The numbness will probably be permanent. It's normal I guess. A lot of women that I have talked to who have had c-sections with childbirth said they have numbness in the same area. As far as the pain goes in the hospital, if a pain med doesn't work DON'T be afraid to ask them to change it. I tried three before I found which one worked best. Good luck, the worst part will be over before you know it!!
 
It's true what he said about being in pain you should never be in pain. If it isn't work yell scream, cry, whatever it takes.
Over the years I have built up an incredibly high tolerance to painkillers they ended up putting me on something that slightly stronger than heroin as well as a drug derived from marijuana.
 
IAmTheWalrus said:
Good luck!

I see in your sig you say you're living in Ireland, if you don't mind me asking what hospital do you attend? Is it in Dublin?

I'll obviously understand if you don't want to answer that. lol
Click to expand...

no worries lol, i'm living in the north so i attend antrim area hospital lol, i think the royal in belfast is better though but i practically live next door to the other one.


thanks everyone for all the tips, i didn't actually know that i'm not going to be in huge amounts of pain, i had visions of me waking up and just going 'uuugggghhhh' from all the pain, now it sounds like i'll be as high as a kite instead lol. it'll be weird not having all the crohn's cramps, i've got used to them and i'm intrigued to find out if i'll be one of the ones that get the 'phantom rectum' lol. i don't feel like i'm going to hospital i feel like i'm getting ready to go somewhere, like on a holiday hehe.
 
I lost the first 3 days after my surgery too. Then all I remember for the next 2 are the funky halucinations I had from the Demerol. It was amusing to me, but I'm sure it wasn't fun for those around me....lol
 
I had a pan proctocolectomy with removal of the anal canal because of Crohns fistula and abscesses etc - now have a permanent ileostomy. Had 'open' surgery with no major issues. Quality of life much better now.
Check out Dansac products.
Be careful with 'pulpy' food (oranges etc) they can block your stoma if you over do it, also watch out for peanuts and other food that is difficult to digest.

May be of interest to you: google - Jessica Grossman.

Good luck and best wishes.

ps i am riding my motorbike around Ireland later this month incorporating a visit to see my cousins in Nenagh, Tipperary
 

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