About to undergo the Op, seeking/offering advice

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Joshua_P

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Sep 11, 2011
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Hey, my name's josh.

I'm going to have the operation to have a stoma and a pouch on the 21st september. Scary times.

I've had Crohns for two years and my doctors assured me that I've tried every medication out there but sadly we just couldn't treat all of the ulcers in my gut with just that.

Instead of moping though I've decided to do a blog listing all my experiences thus far, and the workings inside my head before and after having it and how my life will change.

A link to the site is surgery-wannabe.livejournal .com just remove the space from the .com.

If there's anything in particular you'd like me to blog about in regards to my experiences so far, then please ask away and I'll share as much as I can.

However I noticed this whole section is about stomas so I have to ask... How did people cope in the week before having the op, and how did they react to it afterwards? I imagine I'mma gunna cry when I see it, but how have people reacted?

Ta :)
 
Joshua,
I am sorry to hear that you are having such trouble trying to find healing. My prayers will be with you. Stay strong and positive and rememer although it feels like it its taking you down..please remember. This to shall pass. :hang:
 
Thank you for the good will :) I think the reason why I want to forbid blog is to make something good come from it. If my experiences can give others a bit of peace of mind then that'd be great :) i've known it could come down to this for a while now so it's just the anticipation before having it done. 10 days eek :p
 
I'm sorry to hear about your experiences Josh! I hope all is better soon, and trust me, everything is much easier with an ileostomy :)
My surgery was actually an emergency procedure so I didn't have much time to take it in. I was in hospital for two weeks waiting for my doctor to help me, and i was so out of it and tired that i had no idea what was going on. It turned out my doctor was on summer holiday so we just swicthed to an even better doctor who gave me an ileostomy the next morning. About a week after I was still in hospital and had pretty much recovered, but it just kicked in that i had no idea what an ileostomy was! So after many nurses explaining what it is, I felt much better, and since then I am so happy I don't need to worry about food and bathrooms etc! (although leaks can be a pain!)
good luck with everything :D
 
Thank you, but that's one thing I've heard about having the stoma bag put in. Apparently it can make you feel too healthy said my doctor so I gotta make sure I don't pig out on food and put on too much weight!
Cor that sounds like a bit of a shocker! No my doctors have been great for the most part, my main one Dr. Wyke let me know back in the early days that surgery was an option and I've seen stoma nurses and all to let me know about the bag so I'm feeling pretty clued in, it's just the difference between knowing about it and having it you know?
Regardless, I hope that by blogging about it it'll give me some catharsis and a method of venting and that letting others read about the experience might help them go through it as well :)
 
yeah true, you just have to live with it to understand it tbh. I have so many embarrassing moments cos of the stoma bag, but as time goes by those become rarer and rarer :)
i just took a look at your blog, its really good :) but idk how to comment without an account :(
 
I can imagine it can be quite embarrassing. Like swimming. I used to be a right water baby, and I still do love swimming and rowing and all when I can. But the medicated swimming shorts that cover the stoma probably look like grandpa shorts, so hmm...
Thanks, well if you have any ideas on what I can do with it you can always message me on here :)
 
I can t help you re pre Op because I was an Emergency .. but Post op I recoveed well . The stoma nurses come to see you re changing the bag .. you get used to it .. I made a few mistakes at first .. :) The most important thing is to get the size of the hole in the bag cut to the size of your stoma . they all come in differnt shapes and sizes .. and they shrink . :p the stoma nurses give you a good supply ofr things you will need and teach you how to use them then they will give you home visits or phone calls . to make sure you are doing fine .you will have to give your gp a form to sign to enabl3e you to order you bags ect., over the phone .. if you need anymore info plz ask me . no its not so much about the op , but i hope it helps .. at the time of my op ( feb) this year no 1 anyway ... I was sedated for two days , on Pain relief for 3 days an d IV fluids, then . soup , jelly , , and slowly introduce new things . Out of Bed the Third Day.. home on the 7th day :) not b ad consideriong I had a prolapse and a hernia, was completly dehydrated, and lost all my electrolytes .
good luck , it will go easier than you will imagine .. it is a big op, yes .. but they are exsperts now .
nurses are v ery herlpful so are other patients .
lots of thought to you
Jan
,
 
hi joshua, i'm 6 weeks post surgery (had panproctocolectomy and ileostomy) i was given a month's notice that i was getting it done, i was pretty accepting of the news as i'd been sick for so long. a week before the operation you feel nervous but the whole thing seems surreal, being wheeled off to theatre, it still felt surreal as no matter how much research you've done prior to the op you are still going into the unknown.

i really thought i'd cry and be pretty depressed when i saw it for the first time...i saw it for the first time properly about 4 days post op, when the nurse changed the bag, i remember just saying 'eewww' as she peeled the bag off and i saw the stoma was dirty, she was quite rough with it when she was cleaning it and it was flopping about, that's what made me cry, i think if she was more gentle i would have been fine.

i'm so happy now, i can't believe how well i feel and if i had to go through it again i would.

...as for swimming, i came across a stealth belt and thought if i was a guy i would definatley have got one. they wouldnt be great for wearing for long periods of time as you wear yor bag sideways under the belt...but if you were swimming for a couple of hours i think they might be good. http://www.stealthbelt.com/
 
Hi I have had my ileostomy for 18 months now and it changed my life, the only thing I hate about it s when it fills with air on a morning and feels like it might pop!!! Also not being able to wear the clothes I want to which I suppose is a small sacrifice to make. I knew I was getting one about 3 weeks before and was just so happy! I do hope everything goes ok for you x
 
Hi Josh

I had five weeks to really prep, although I had a fair inkling beforehand that the ileostomy was the route I was going to go down. I spent my time reading/researching everything about it and was quite excited to not feel like a sack of s@#t every day.

I ended up spending almost 7 weeks in hospital because of a few complications, but it was still good to be able to eat foods and not have abdominal cramps. Even though I'd done all the research, I had to go re-read everything because it makes a difference when you actually have a stoma/bag. The learning curve was a bit high, with the new language (appliance, tail, etc.), products, and new issues.

I had a HUGE emotional breakdown about 10 weeks after surgery which centred around "oh my gawd, how am I going to cope with a bag for the REST OF MY LIFE". This breakdown took up the better part of a Sunday afternoon, and after that, its been all good. I got over myself after that.

And yes, I've been pigging out a bit. Initially, you'll have to be on a low residue diet, but as you gradually introduce new foods, life becomes exciting again. I was lucky because I was about 35 pounds underweight, so I had some room to eat lots. And with no pain when I eat, I'm loving my fruits and vegetables.

I wish you well with your surgery and hope that it's every bit a success and you have a quick-smart recovery!

Take good care,

Kismet
 
Hi JoshuaP! Mine was an emergency, but I knew it was coming. Perforated sigmoid. I knew when I went to the emergency room that Sunday morning what I was in for. I would've been depressed except for one thing....these folks on here! So rather than feeling sorry for myself, I decided I was never going to look back. Stan can be reversed some day. But I'm in no hurry to do so!

You dont say exactly what proceedure you are having done, or if it's going to be open or lapro? The more detail you can give us, the more help we can give you.

I am sorry you have been so ill! I hope that this surgery will give you a new lease on life!
:kiss:
 
Cor, that's alot of people to reply to! Jandeacs, I've heard that people can be up and about a week, which is good because I want to go to uni! I'm already going to be late for my course! But I'll keep in mind that I need to stay hydrated and be sensible for the first few days. I'm a bit of a jitterbug with my hands so here's hoping I can get the dexterity together to cut the right size hole in the stoma bag. Does it hurt and be uncomfortable to cut it too small?

littlefreebird, oh my days I'm so sorry to hear that you had to go through that! It sounds like that nurse was rough, it doesn't kill to be delicate after having major surgery you know? But it's reassuring to hear that you really do get better after this op, I mean I've heard the quality of life you get is amazing but to hear it from someone who's done it... reassurring :) OHH and thanks for the link for that swimming thingie! I've saved that, I might go about purchasing one and see how it goes or ask my stoma nurse and see if she's heard about anyone trying it out.

Christie, well I don't plan on wearing tube tops or anything that shows my belly :p but I know what you mean, women like having lots of clothes and if I was a lady I'd definitely feel restricted by having a bag. Some of my t shirts used to be a bit tight when I was bigger so I'm sure that if I do gain the weight again (I don't like being a skinny stick that I am atm, I prefer having a lil bit of chub :p) that I'll have to buy bigger clothes since... tight clothes = visable stoma bag :( But again, glad to hear you were happy to have one and have been since!

Finally, Glum chump, the first person I've heard that has had complications! I know the operation is alot safer now than it has been, but gawd 7 weeks... I hope that doesn't happen to me, I have uni to get to! Again, nice to hear the cramps go, the main symptoms I have is the pain (which hurts like HELL) and being sick when I eat so it'll be nice to eat normally and all. Though I had heard that you can eat what you like after the operation but a fair few people here have said they had a gentle diet to begin with. Makes sense really :) I'm sorry to hear you had a breakdown but we're not robots, we are human, and to have such a massive change to our lives is going to upset us you know?

To everyone, thank you for the help! Really appreciated to hear about your experiences! Thank you again!
 
AHH and someone else added a comment while I was writting all that!

Terriernut, all my info is downstairs but I can tell you that my bowels from the rectum to the sigmoid is scarred from previous inflamation but that's settled down, but they don't know how bad the inflamation is after that, so I could have it all cut out. My doctor has warned me though that I might have the whole colon removed, depends on how the section I just mentioned is now, if that's gotten worse then that'll go as well. I'm feeling alot better about it now! I didn't actually realize how worried I was about this but actually reading about you guy's experiences has just opened that up and made it all go. Sounds relatively safe :)
 
Read thru the stoma subforum, lots of info on here. And tips! I hate to say this but you may find you are in hospital 7 to 10 days. It will take awhile to recover, but you are young, and you will no doubt recover quickly.

My best advice....take it easy!! I didnt, went back to work too fast. Major hernia. VERY bad idea to do too much too soon.
 
Hi Joshua...I'm assuming that you're going to have a stoma? I got mine almost 2 years ago now during an emergency surgery (I had perforated my sigmoid colon and distended my bowel). I was in the hospital for 24 days due to some complications; I developed 2 blood clots in my lungs and then I had a blood infection from my PICC line. But, overall, the experience has been a positive one. As others have said, I got my life back. I used to think that having to live with a bag would be horrible and how do people do it??!! Turns out that after a while, you don't even notice it.

In your previous post I see that you heard that people can be up and about in a week. That's not necessarily true. If you have open surgery you're looking about a 2 to 3 month recovery time. Even with laproscopic surgery I'd think that a month recovery would be pushing it. You have to remember that this is a major surgery and if you try to do too much too soon you just wind up making problems for yourself.

When is your surgery?
 
Terriernut, my doctors and stoma nurses have said that as well. They've said that as long as I remember my plans in life and keep cool, do what I can when I can and try to get better then I'll be up and about. Even after leaving hospital I don't expect to go straight to uni, I need to learn how to maintain the bag and all as well but I'll be sure not to bite off too much and read those forums thank you.

Nyx, ahh the second person to have complications that I've heard, but again even with that it's good to hear you don't regret having the surgery. Also I know that it might take longer than a week but talking to my nurses and doctors and all i've heard 7-14 days is the average hospital time. I know it'll be laproscopic (keyhole right?) but I really am eager to get to uni. Even if all I do is attend lectures and work, at least then I'm not doing too much and am working at my course hey? My surgery is the 21st September, so 10 days time now
 
That's two links I've got saved from you, I'm not going to to look at it tonight because I'm a lil bit tired but it's saved on my stickie so I'll have a gussy tomorrow, thank you! :)
 
I had complications too Joshua. Staff infection, UTI, parastomal hernia. But if they can do it lapro your recovery time should be quicker.

Once you get the hang of the bag, its easy. And Hannah is right, watching the videos is a help!

But reading through all the posts on here is a good idea as well!
 
I know it's deffo going to be done by keyhole, which is quite a relief by the sounds of things. I'm just praying there aren't any serious complications since, well if there are then my plans might get complicated after that. It wrong if I sound more worried about uni than my Crohns, I'm equally worried about them both but I really don't want to have to waste a whole year because I missed a few weeks at the beginning of my course you know? But I will have to read the other posts and the videos :)
 
I had was lucky I was told 6 months prior to my surgery while in hospital that if the cyclosporin they were giving me didn't work I would need surgery.
I had a subtotal coletomy/ileostomy in March this year. I developed ileus after the surgery in had to have a NG tube 3 seperate times. I was in hospital for 4 weeks, home for 10 days then had to go back for another 8 days.I had problems with nutrition as well.
It was a bit scary at times but I never regretted getting the surgery.
Before the surgery I did wonder how I would cope if I hated the whole stoma thing and what would I do if I totally freaked out about it all.
All the best for your op.

M
 
Mussen - I was initially diagnosed with Colitis and they put me on cyclosporin as well, that's when I was first told I needed surgery. Thankfully it did help calm things down but I had a colonoscopy and was rediagnosed with Crohns when they saw that it had spread further than what Colitis normally does.
Did you have an open surgery or closed? It's getting a tad bit scary the amount of people coming forward now that have had complications, although it's good to know that people still don't regret having it done. I just really wanna be better for uni, it'd be horrible to have to hold back a year because of this you know? But I suppose my health should be paramount to anything else, but still... Not getting any younger you know? :p

Cheri - 9 inches is still alot! But then again isn't the total span of the small/large intestines supposed to reach a mile or something silly? I know that it's really long though. My aunt had cancer in her rectum and had to have 8 inches removed for that and a bag put in place. Can't imagine how scary it must be at the time, but I think that's why I'm doing my blog. It's my little venting ground and hopefully my experiences might give others going through it some strength, especially as afterwards I'm more than confident my quality of life will increase somewhat. Your cousin is having her op two days after me btw :p crazy world huh? Lets just hope that I can get through this without any complications :)
 
I was initially diagnosed with crohns colitis then they were unsure, finally diagnosed with U/C after my surgery. My surgery was done laproscopicly.
Yes your health should be the most important thing. Uni will wait for you, your health wont. I have lost 9 years to this disease already, feels like I have a weight off now though....(but I still have more surgery to come and tail end of colon they left behind is playing up.)
Once you get over any post op issues (if you have any) then life is soooo much easier. I think sometimes when you have been sick for a long time you forget what normal is like.

M
 
Hi Joshua - Just wanted to pipe in and say that I had no complications after any of my surgeries!!

My first ostomy was temporary, and was created in an emergency surgery after my colon ruptured. No time to think about it! Get it done or die, so off to surgery I went. I was really quite calm after it all, and was more suprised to see 50 surgical staples than I was to see the bag.

I was since re-dx with Crohns, and had a permanent ileostomy placed in March this year. I was totally find with it. I knew what to expect, and I had been so sick, I couldn't take one more round of meds that wouldn't work and practically begged for the bag.

I think the worst part is thinking about the surgery itself. I am always fine until they wheel me into pre-op. Thy put that surgical hairnet on and I'm a goner, thinking about myself lying there gutted like a fish! They can't even get the anethesia into me fast enough!!

I had one slight infection in my incision, just a quick round of antibiotics, and that was it in terms of "complications" for me.

Good luck with your surgery and recovery. You'll do great! Just remember to rest, rest, rest and chew, chew, chew.

Pretty soon you'll be one of the cool kids hanging out in the stoma forum!!

- Amy
 
Hi josh
In answer to your Question , what happens if the hole is too small .. answer .. it leaks ! as it does if its tooo big .. you get a little measuring thing in ther box of bags .. I use .. Charter health care .. they will help you with anything , so will the stoma nurses they wont abandon you .. of Course you must rest rest rest once at home .. no lifting , or sport , or anything reallly .. lol .you will know , i had a cleaner come in .. diet is easy , i just kept it simple to begin with mostly fish and rice .. lots of connatations on that .. you will be fine .. :)
Jan & Miss Piggy
 

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