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Crohn's Disease Forum » Surgery » Stoma Subforum » Getting surgery on fri..... any advice?


 
03-06-2013, 01:05 PM   #1
jcaztle
 
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Getting surgery on fri..... any advice?

Ok my fellow ppl, so im getting an ileostomy bag this coming fri. I'm really nervous about it n and could really use some advice. quick background story; ive had crohn's now for 6 yrs and have been on remicade, asacol, and prednizone off n on for some time. Ive been responding to them ok but my rectum can't seem to get controlled n is the reason for the diversion. What can I expect after the surgery? Will I b in a lot of pain when i wake up? How will I know when I go to the bath? Does it get in the way of daily activities (I work at u.p.s)? How are your guy's experience with it (good or bad)? How do u shower n deal with it mentally? I am kinds of self conscious so I think I'm going to take it really hard mentally. Please let me know guys. I thank u for reading this.
03-06-2013, 01:48 PM   #2
hthompson631
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Ok my fellow ppl, so im getting an ileostomy bag this coming fri. I'm really nervous about it n and could really use some advice. quick background story; ive had crohn's now for 6 yrs and have been on remicade, asacol, and prednizone off n on for some time. Ive been responding to them ok but my rectum can't seem to get controlled n is the reason for the diversion. What can I expect after the surgery? Will I b in a lot of pain when i wake up? How will I know when I go to the bath? Does it get in the way of daily activities (I work at u.p.s)? How are your guy's experience with it (good or bad)? How do u shower n deal with it mentally? I am kinds of self conscious so I think I'm going to take it really hard mentally. Please let me know guys. I thank u for reading this.
Hey and welcome to the forum. You have come to the right place for answers. I hdo not have an ileostomy but there are plenty of nice folks here that can help you. I'm adding a link for you to take a look at about ileostomys

http://www.crohnsforum.com/wiki/Ileostomy
Here start with this. I wish you the best. I know this is a very difficult and trying time but we are here for you.
Keep us updated of how you are doing.
03-06-2013, 01:57 PM   #3
Cat-a-Tonic
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Hi jcaztle and welcome to the forum. You've posted this in the "Members Only" section of the forum, which is fine - but you may get more responses if I move this thread to either the Surgery or Stoma section of the forum. Would you be okay with me moving this thread? Thanks, and welcome again.
03-06-2013, 02:09 PM   #4
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Hi cat. I will b ok with moving it.still getting the hang of this lol. How can I move it?
03-06-2013, 02:19 PM   #5
Cat-a-Tonic
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I'll move it for you, to the Stoma subforum. You'll see a re-direct here and the actual thread will be there.
03-06-2013, 05:58 PM   #6
Nyx
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Hi! Welcome to the forum and our little group of miscreants I have a permanent colostomy, and have had it for just over 3 years now. It's a huge adjustment, but for me, has been well worth it. I too had huge problems in my rectum and anus with this disease. The stoma definitely gives me freedom from the pain and suffering of that. You'll find with an ileostomy that your output will be quite liquidy as opposed to mine, which is pretty close to normal (whatever that is!). But, once you get the right appliance, and a routine, you won't even notice that you have a stoma at all. I haven't found that having one gets in the way of any everyday activity, and it shouldn't get in the way of your job (unless you have to lift very heavy objects, which is a no-no because you could get a hernia pretty easily). I can't really tell you how to prepare mentally, as I never had to...my surgery was an emergency procedure and I just woke up with a stoma...I didn't have a choice in the matter.

Good luck with the surgery...I hope it all goes well for you. Any more questions, feel free to ask away. We're a pretty good group for trying to answer as best we can.
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Current meds: none
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"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-06-2013, 08:41 PM   #7
annawato
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Hi jcaztle and welcome to the forum. My first ileostomy was a bit of a surprise like Nyx's. The surgeon said I may get one but of course I thought no that won't happen to me. Well it did and it was a shock but its amazing how quickly you do adjust to it and get over the ickiness factor etc. My second ileo was planned and I got it Nov 23 last year.
Firstly, yes there is a fair bit of pain post op but its only really bad for a day and they will give you lots of drugs to take the edge off so enjoy them while you can.
Ileostomys can be a real nuisance for the first couple of months while you get used to what products suit you, and until the output settles down and hopefully becomes less liquid. There are lots of threads in this stoma subforum that will give you more information.
It is hard emotionally at first, but you will come to grips with it and we will all be here to offer you support and answer any questions you have. So don't hesitate to ask anything, there are no silly questions here.
I think you asked about going to the bathroom? The bag that will cover your stoma will slowly fill up with the output (poo) and when It gets about hald full then its time to empty it. The nurses will do this for you the first couple of days and the stoma nurse will teach you how to do it and also how to change the bag and baseplate.
Some people shower without the bag on. My ileo is very active so I shower with the bag on. You can also swim and have a bath with them. They stick on pretty well.
The stoma nurse will give you heaps of information and teach you everything you need to know but thee will always be stuff they don't cover and thats where we will all be able to help you.
Mentally, I think the only way to deal with it is to accept that it is necessary and that it is helping your bottom heal which is a good thing. Think of all the horrible things you put up with now and that they will be gone. Read all the threads on here to learn as much as you can. The products available nowadays are pretty good so no-one will know you have a stoma unless you tell them. i don't work so I can't help you with that but lots of people here do with no trouble.
Anything else just ask me. I've got a bit of brain fog today so sorry if this answer seems disjointed.
And all the best for Friday. Let us now how the operation goes and how you are coping. If you post in this stoma sub forum there are a lot of us who will see and help you.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-06-2013, 08:57 PM   #8
annawato
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p.s. some good threads for you to look at are
http://www.crohnsforum.com/showthread.php?t=45267
http://www.crohnsforum.com/showthread.php?t=45449
http://www.crohnsforum.com/showthread.php?t=45433
http://www.crohnsforum.com/showthread.php?t=45979
http://www.crohnsforum.com/showthread.php?t=46083
plus there are some 'stickies' at the top of the stoma subforum page that may be helpful
03-07-2013, 06:29 AM   #9
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Hey jcaztle, welcome to the group and sorry to hear about your upcoming surgery. I got my colostomy installed 4 weeks ago, and I will be honest, it is taking time getting used to it. Mine is permanent and sometimes it's hard to think that I will have this forever.

By looking at your photo, you look like you have a driving force to get you through this. I have 3 little ones and a beautiful wife. When I get down, which happens every once in a while, I think of them.

Pain mgmt will be key for you while in the hospital. I was given an epidural which worked great for me. Others here have bad complications. This was my fourth abdominal surgery, and IMO, the most comfortable. Doc gave me a mainline pick in the neck which fed me TPN, provided me with antibiotics and other meds and was able to draw blood from it. I was able to have my IV removed from my arm. Far more comfortable not having any lines connected to veins in an arm.

I'm still in some pain four weeks out. Unfortunately, I was weak going into the surgery and the first 3 weeks post surgery were real rough. The past week has been a little better and I've been able to return to work part time. I find that going to work is making me push myself harder.

Try all the different types of bags to see which fits you best. I've blown a couple already. Some of it is due to gas build up as I learn to eat normal food again. For me personally, I found that Holister fits me the best. Having a comfortable connection eases the mind.

Finally, I bought a pair of belts from Ostomy Secrets for everyday wear. They have slots which hold the bag close to the body. Doesn't exactly hide that you are trying to cover something, but it does feel good when it is snug to the body.

Best of luck with the surgery.
03-08-2013, 05:09 AM   #10
annawato
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I had a picc line in my arm for tpn, antibiotics and pain meds and they also put a central line in my neck. The central line was SO uncomfortable. The dressing was all stuck to my hair so pulled everytime I moved. i found it almost as distressing as the abdomen wound. Well not really but it did make me miserable and I am very used to IV and Picc lines. The funny thing was that my hair was dyed purple in a streak from it. My kids thought that was very cool! Maybe neck lines are easier for men with short hair?
But if you can see if you can get a pick line put in. It saves so much hassle with IV's failing and having to be resited and they are much more comfortable than normal canulas.
Another handy hint for surgery.

P.s. An epidural sounds like a fantastic idea and makes me wonder why they don't do them more often. It would get you thru the worst of it - the first day or two.
03-08-2013, 05:21 AM   #11
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Hey Jcastle I had an ileostmy for 8 months when I was 14/15 years old. My comments wille cho the above post but thought I would give you my input.

I found thing difficult at the start, I had issues with the bag becoming loose around the area it was stuck to, but this was soon resolved with what I remember being 'stoma glue' basically a glue that made sure it stuck no matter what. I could shower/bath withut the bag coming off. I had a stoma ileostomy nurse I could contact to discuss any issues with - i recommend you ask about this! But you will find out over the first few months what works best for you and yor body and lifestyle.

In terms of social situations it may take some egtting used to. You will find some foods and drinks move through you more quickly than others and will find the bag filling up v quickly and it needing emptied a lot. So if possible try and avoid things like this when u cant be in the loo easily. But I tink this will be a personal thing and with trial and error you will get used to it.

I also rememeber I used to eat my last bit of food at least a good 3 hours before going to bed as this meant waking up less frequently to empty etc during the night.

It rally comes down to trial and error and experience. The longer you have it the easier the whole thing is to come to terms with and manage more easily. It is likely to be frustrating and upsetting at the start but dont give up and try not to be too downheartened. I managed to return to school every day and play football the odd time and do athletics etc. One advantage was that I cold return to eating pretty much whatever I wanted! So it may not all be bad.

Any questions please ask and all the best.
__________________
Crohn's Disease - diagnosed 2001.
Small bowel resection 2003 & ileostomy for 6 months.
Strictureplasty laparotomy in 2012.

On Azathioprine 100mg per day since 2003 and in remission since, however my crohns returned Feb 13.

Currently on:
- Budesonide 9mg per day
- Humira
03-08-2013, 10:27 AM   #12
jcaztle
 
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thank you all for the support and all the postīs. they really helped me. ok, so today is the big day. I'm on my way to the hospital for the surgery. I hope it all goes good and that I have no complications. I will keep u guys posted on my recovery.
03-08-2013, 01:54 PM   #13
glum chump
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Good luck, jcaztie!! I hope your surgery goes wonderfully and that your recovery is short and sweet. Remember to get moving as quick as you can...even a few tiny steps around your room is helpful in the recovery.

Look forward to an update when you're more conscious!

Kismet
03-11-2013, 09:56 AM   #14
2thFairy
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How are you doing today, jcaztle? Up and walking the halls? Any food yet?
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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-11-2013, 11:58 AM   #15
Nyx
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Hope the surgery went well and you're resting comfortably...and eating something too!
03-11-2013, 12:20 PM   #16
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hey people. so here's my update, on Friday I got there like at 9:30 so I can see the e.t nurse b4 the surgey. it was a bit emotional for me but not as bad as I thought. she explained to us(my wife) what to expect n the different kinds of bags. it was really great info. after we went back up to wait for my turn. I was supposed to be in surgery at 12, but the doc had complications with his 1st surgery(glad it was not me). so because of that I didnt have it till 5:30. so u can imagine how frustrating this was for me. I went in to the o.r and my surgeon is an eagles fan and im a cowboy fan, so we were having a conversation about football and next thing I know I woke up in the recovery room(he is a great person, treats u like family and very patient). my recovery was actually quite fast. the discharged me on sunday like at 4 p.m and they we're surprised I was doing so well. I was able to eat low fiber food on Saturday but had problem urinating. I urinATED by myself till sunday. so far so good. im not emotional likeI tthought I would be. im actually looking forward to the challenge of this. im still sore on my right side n can't,walk a lot. but im feeling better from my rectum. I do have a little discharge from the right side of the bag ( by the seal) but they say is normal. my home care nurse is suppose to come n help me change it today. all in all, I feel that I made the right choice. I thamk god for this because I asked him to guide me n make me strong, and he has answered my prayers. thank u all for ur support. and for those of u that r scared of this; I can now tell u from experience that is not a big change. like they told me at the hospital; u can choose to live with the enemy or live witg a friend( refering to the stoma) I chose to live with a friend.
03-11-2013, 12:41 PM   #17
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Did I read you correctly in saying that you are home now? Discharged 2 days after stoma surgery?

If so, that's impressive. I was in for 9 days. Best of luck on your recovery.
03-11-2013, 12:55 PM   #18
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So good to hear from you! I can't believe you are home already. You must have just had a diverting ileostomy and not a colectomy. Good deal!

Go Cowboys!!
03-11-2013, 01:42 PM   #19
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Did I read you correctly in saying that you are home now? Discharged 2 days after stoma surgery?

If so, that's impressive. I was in for 9 days. Best of luck on your recovery.
yes u read correct. I had a diversion, so idk if that makes a difference. I think what helped was that I didnt go into surgery weak. I've read of ppl going in weak so that delay's the recovery time.
03-11-2013, 02:02 PM   #20
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Did I read you correctly in saying that you are home now? Discharged 2 days after stoma surgery?

If so, that's impressive. I was in for 9 days. Best of luck on your recovery.
yes u read correct. I had a diversion, so idk if that makes a difference. I think what helped was that I didnt go into surgery weak. I've read of ppl going in weak so that delay's the recovery time.
03-11-2013, 04:29 PM   #21
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So good to hear from you! I can't believe you are home already. You must have just had a diverting ileostomy and not a colectomy. Good deal!

Go Cowboys!!
Pardon my ignorance, but what is the difference between diverting for an ileostomy vs a colostomy? Aside from the colon and small intestine?

Why the difference in recuperating between the two procedures?
03-11-2013, 05:22 PM   #22
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I mentioned colectomy, which is removal of part or all of the colon. Removing the colon or part of the intestine freaks out your system more, rather than just detaching part of the small intestine and redirecting it, as there is more cutting involved, more moving around of all of the internal organs to get parts out, and more time involved under anesthesia. The moving around of internal organs is enough to sometimes shut your bowels down and this generally creates a longer hospital stay waiting for them to wake up and function again, and then allowing you to slowly start eating solid food. That usually takes 2 to 3 days, or longer. Not until they wake up are you allowed anything other than liquids.
03-11-2013, 05:34 PM   #23
2thFairy
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mflaum, I just reread your earlier post and see that you had surgery, so you do already know about having to wait to eat. Like you, I was in for a long stay, 12 days. My bowels didn't want to wake up and it really sucked!
03-11-2013, 06:38 PM   #24
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mflaum, I just reread your earlier post and see that you had surgery, so you do already know about having to wait to eat. Like you, I was in for a long stay, 12 days. My bowels didn't want to wake up and it really sucked!
I know all about waiting. My past surgery was on a Thurs. I got ice chips on Saturday and thimbleful cups cranberry juice on Sunday. Seemed like forever. I assumed that handling the small intestine would be the same as the large and the stay would be for more than 3 days.

Then again, my surgeon removed my rectum. He might have jostled around a couple of organs in the process ; )
03-11-2013, 06:51 PM   #25
2thFairy
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I know all about waiting. My past surgery was on a Thurs. I got ice chips on Saturday and thimbleful cups cranberry juice on Sunday. Seemed like forever. I assumed that handling the small intestine would be the same as the large and the stay would be for more than 3 days.

Then again, my surgeon removed my rectum. He might have jostled around a couple of organs in the process ; )
To remove the rectum, the surgeon has to do a lot moving of guts to get there.

It depends on how what is removed, how ill you are beforehand, and what further procedure is being done. Since jcaztle had a diversion ileostomy, I assume no bowel was actually removed, just disconnected and pulled through the skin.

Still.... I think jcaztle must be a man of steel to have gotten out so quickly!!!
03-11-2013, 09:38 PM   #26
annawato
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2 days! That is truly amazing! Was it done by keyhole surgery or were you cut right down the middle? Like 2thy said you are a man of steel. Just adjusting to dealing with the stoma can take awhile. You obviously have a great attitude.

Interesting the difference in recovery between a diversion and resection/stoma/colectomy. I never realised that the more they did in there the greater the recovery time. Makes me realise why it took me so long this time as besides the resection and stoma they removed lots of adhesions and an abscess. Still i am still gobsmacked that Jcatzle was out in 2 days.
03-11-2013, 10:23 PM   #27
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Wow that does seem like a rather quick recovery/discharge. When I first had my surgery (also a diverting colostomy) I was very ill, in & out of intensive care & near death from the infection that made the ostomy necessary, so I was in the hospital for quite a while post-surgically.

However, even if I had been "healthy" I don't think I would've been home in two days. Maybe the surgeon was playing it extra safe, but I wasn't even allowed to eat for 2-3 days, until I was passing gas/stool & they knew the ostomy was working. So to have surgery on Friday, eating on Saturday, & home on Sunday seems very quick to me. But my experience may not be the norm.
03-11-2013, 10:37 PM   #28
annawato
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I think your experience, other than ICU is the norm. Two days is very quick. But they must have felt confident that JCatzle could cope otherwise surely they wouldn't have let him go home.
03-11-2013, 10:58 PM   #29
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hey guys, well I went into my surgery in a healthy state(other thanmy rectum) so I think that has a lot to do with my recovery. dont get me wrong, im still in some pain but I have pain killers to help. I honestly thought I would stay in there till Tuesday, so when they said that if urinate I can go home I was surprised. im still very crampy though. when I walk I feel like I can't breath.
03-12-2013, 03:31 AM   #30
annawato
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Did you feel ready to go home or was it more their suggestion?
I guess being in tip top shape would help enormously but I am still amazed at your strength both physically and emotionally. I'm so glad everything went well for you but make sure you take it easy and recover properly.
And any questions, we are all here for you.
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