# Ileocecal resection



## sara88

Hi guys 

Unfortunately I had the misfortune of being diagnosed with crohns in March that has been complicated so much since that I cannot try any medications but rather I'm going for a resection and appendectomy on July 10th. My crohns would have been manageable with Meds if it did not inflame my appendix but apparently my appendix has perforated and keeps leaking and forming an access around it. I am super nervous about the surgery and the possible complications and just wondering if anyone can offer any advice/experience if they have gone through the resection and if anyone has crohns on the appendix which I gather from my docs is relatively rare. Thank you


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## DJW

Hi sara88. 
Sorry you're facing surgery. That was the first operation I had. 
Sending you my support.


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## sara88

DJW said:


> Hi sara88.
> Sorry you're facing surgery. That was the first operation I had.
> Sending you my support.


Thank you for the good vibes ..how did it go? Was your recovery ok? I'm so nervous


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## DJW

My nerves got to me as well. Perfectly normal. 
My recovery was straightforward with no complications. 
While it sucks to have surgery at a young age; youth is on your side. 
Keep us posted.


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## sara88

DJW said:


> My nerves got to me as well. Perfectly normal.
> My recovery was straightforward with no complications.
> While it sucks to have surgery at a young age; youth is on your side.
> Keep us posted.


I sure hope that's the case for me..thank you for the support and good vibes!


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## drift

I just had the same surgery in Ottawa on June 12th so I clicked on your post. I had strictures near the ileum. They took out 30 cm of small intestine which was strictured. I was worried of complications and still am which is why I came to this forum.

The surgery went well and I did not need a stoma except when I woke up I was in severe pain from what felt like an obstruction. This lasted about 3 days and I was throwing up. Honestly the pain meds weren't working for me and it was a horrible experience.

From a CT scan they said I had a distended bowel possibly due to swelling. It sort of resolved and I was sent home. But then I became over-confident and tried eating too much too fast and I had an obstruction at home which I waited out and threw everything up. I hate going back to hospitals so I didn't call 911 and let it resolve overnight. But then 2 days later I was bleeding a lot every hour so I had to go back to emergency. After a few days the bleeding stopped and they sent me home again.

It's now about 3 weeks post-op and I'm at home and feeling okay, but I'm very careful about eating and still have pain. I stick to low-residue and very small meals with Ensure, or else I get cramps and bloating/tightness, more when standing up. I'm still worried something's not right but the surgeon team told me the pain is part of recovery and should go away. I just hope I will be able to eat more soon, as I'm barely eating any more than I could pre-surgery.

This is my first surgery the only advice I can think of is to take it easy after and eat food again slowly afterward and see how it goes before eating more. If you eat too fast and can't tolerate it can be very painful, but if you go slowly then you can test the limits. I had complications after which was quite painful at first but they resolved in time. I'm pretty grateful as long as I'm not having obstruction pain which to me is the worst pain I know of.

I mean worst case is my pain doesn't resolve and I still can't eat and need more surgery to correct it. Best case is my pain goes away and I can slowly eat more again. But I worry too about complications even recovering from the surgery.

My story isn't that inspiring but I hope your surgery goes well. The surgeons are very skilled although they can't control everything, but they're still very good at what they do.


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## Caitlin84

My Crohn's was actually diagnosed because of my appendix. They thought I had appendicitis. When they went in to take it out, they discovered my appendix was fine, so they left it in, but found the Crohn's. Fortunately they did not have to remove anything, it was just a bizarre was of getting a diagnosis.

This most recent flare has affected my appendix again. My appendix is inflamed, but secondary to the Crohn's. Because it has not perforated they are hoping when the Crohn's meds kick in the inflammation of the appendix will settle down too. If I have to have surgery, it will be an ileocecal resection, though I don't know if they plan to do anything about the appendix.

I have had several laproscopic surgeries d/t endometriosis and that initial diagnostic surgery. Recovery from surgery itself is usually pretty straight forward. Just be very gentle with your intestines/diet and follow the doctor's instructions. Good luck and let us know how it goes! I may be coming to you for advise in the future!


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## 24601

Hi Sara, 
good luck with your surgery. I've had three resections with strictureplasties and one surgery for strictureplasties alone and all but one of my surgeries had fairly smooth recoveries. The recovery period can vary but you will get there! And 6-8 weeks is a good time frame to have in mind for when you will be feeling fairly normal again - though it can be shorter.

Has your surgeon discussed potential complications? Are there any that concern you more than others? Or just the whole thing? I was very frightened by the prospect of my first surgery but it turned out just fine and I benefitted a lot from it.

Will your surgery be open or laparoscopic? Do you know how long they expect you to be in hospital?

I think there have been some other members of the forum who've had Crohn's of the appendix. I know it's not much consolation since it's your appendix causing you to have this surgery but when they do surgery on Crohnies it is best to get rid of that troublesome appendix so at least you know it can't cause you further trouble.

Wishing you a speedy recovery and good health


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## sara88

Hi Caitlin thank you so much for the advice and kind words. If you end up needing an ileocecal resection (fingers crossed you don't) they would definetly take your appendix as well. I wish you all the best as well and it's nice to hear I'm not the only one with weird appendix crohns stuff going on lol


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## sara88

24601 said:


> Hi Sara,
> good luck with your surgery. I've had three resections with strictureplasties and one surgery for strictureplasties alone and all but one of my surgeries had fairly smooth recoveries. The recovery period can vary but you will get there! And 6-8 weeks is a good time frame to have in mind for when you will be feeling fairly normal again - though it can be shorter.
> 
> Has your surgeon discussed potential complications? Are there any that concern you more than others? Or just the whole thing? I was very frightened by the prospect of my first surgery but it turned out just fine and I benefitted a lot from it.
> 
> Will your surgery be open or laparoscopic? Do you know how long they expect you to be in hospital?
> 
> I think there have been some other members of the forum who've had Crohn's of the appendix. I know it's not much consolation since it's your appendix causing you to have this surgery but when they do surgery on Crohnies it is best to get rid of that troublesome appendix so at least you know it can't cause you further trouble.
> 
> Wishing you a speedy recovery and good health



Thank you so much for your response and kind wishes. I am nervous about the pain/scars/ anastomical leak possibility and possibility of having a bag/ my first surgery ever ..there's just a lot on my mind. The surgeon is going to try and do the operation laparoscopically but from the scans she sees there is a lot of scarring on my appendix and colon and thinks she will probably have to do it open . I met with my anasthesiologist today and he said since the surgery will be most likely open he is going to give me an epidural for 3 days ...also I'm nervous every because I've had complications already...I had a picc line put in my right arm for antibiotic infusions that caused a blood clott in my right arm so I'm going to surgery on blood thinners ...at 27 I feel like my body should be stronger than this. I also have a liver enzyme deficiency I was born with called g6pd that prevents me from taking a lot of medications so I hope they keep my chart straight lol ...just anxious :s


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## sara88

sara88 said:


> Thank you so much for your response and kind wishes. I am nervous about the pain/scars/ anastomical leak possibility and possibility of having a bag/ my first surgery ever ..there's just a lot on my mind. The surgeon is going to try and do the operation laparoscopically but from the scans she sees there is a lot of scarring on my appendix and colon and thinks she will probably have to do it open . I met with my anasthesiologist today and he said since the surgery will be most likely open he is going to give me an epidural for 3 days ...also I'm nervous every because I've had complications already...I had a picc line put in my right arm for antibiotic infusions that caused a blood clott in my right arm so I'm going to surgery on blood thinners ...at 27 I feel like my body should be stronger than this. I also have a liver enzyme deficiency I was born with called g6pd that prevents me from taking a lot of medications so I hope they keep my chart straight lol ...just anxious :s


Oh and they said at least a week in hospital (assuming no complications) and about a month before I resume normal activities


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## highlandsrock

Hi Sara. Good luck with your forthcoming surgery. The thought of it always worried me but the reality was a lot easier to cope with than I expected. I had an ileostomy and lost my ileocaecal valve. I decided to keep a diary going in the lead up to the surgery and then the recovery. There were a few ups and downs but I am know Crohn's meds free and back to a fairly normal life.

My diary is here - http://www.crohnoid.com/p/oct-2010-post-op-in-hospital.html


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## alev

I'm having an ileocecal resection on July 9. I've never had surgery before, but I am looking forward to it as I've been having a lot of problems the last year with obstructions due to a stricture. My surgeon is going to do it laparoscopically and said the recovery should be 2 - 4 weeks with me mostly being tired, but there shouldn't be much pain. I hope he's right and it's as straightforward as he makes it sound. Good luck with your surgery!


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## sara88

alev said:


> I'm having an ileocecal resection on July 9. I've never had surgery before, but I am looking forward to it as I've been having a lot of problems the last year with obstructions due to a stricture. My surgeon is going to do it laparoscopically and said the recovery should be 2 - 4 weeks with me mostly being tired, but there shouldn't be much pain. I hope he's right and it's as straightforward as he makes it sound. Good luck with your surgery!


Hi Alev 

I hope so as well! I hope it is straight forward for both of us! Where abouts are you having your surgery? 

Cheers and good luck!


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## sara88

highlandsrock said:


> Hi Sara. Good luck with your forthcoming surgery. The thought of it always worried me but the reality was a lot easier to cope with than I expected. I had an ileostomy and lost my ileocaecal valve. I decided to keep a diary going in the lead up to the surgery and then the recovery. There were a few ups and downs but I am know Crohn's meds free
> 
> 
> My diary is here - http://www.crohnoid.com/p/oct-2010-post-op-in-hospital.html




Thank you so much! Wow you went through so much but it looks like you came out stronger! Thanks for sharing your journey with me


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## DEmberton

A year ago tomorrow for me, and I'm still pretty healthy and med free. I spent 4 days in hospital, and it hurt for a few days afterwards, but the recovery wasn't a big deal and I was getting back to more or less normal after a couple of weeks. But different for everyone so take it easy. Hope it goes well.

I almost wish the surgeon had taken my appendix whilst he was there. If it ever flares up in my lifetime I'll be annoyed that he didn't ;-). I once spent a night in hospital with suspected appendicitis, but when it got better rather than worse overnight they sent me home with a "probably something you ate". Of course I know now that it was my Terminal Ileum getting inflamed and possibly partly blocked - something that happened a few times over the years.


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## sara88

DEmberton said:


> A year ago tomorrow for me, and I'm still pretty healthy and med free. I spent 4 days in hospital, and it hurt for a few days afterwards, but the recovery wasn't a big deal and I was getting back to more or less normal after a couple of weeks. But different for everyone so take it easy. Hope it goes well.
> 
> I almost wish the surgeon had taken my appendix whilst he was there. If it ever flares up in my lifetime I'll be annoyed that he didn't ;-). I once spent a night in hospital with suspected appendicitis, but when it got better rather than worse overnight they sent me home with a "probably something you ate". Of course I know now that it was my Terminal Ileum getting inflamed and possibly partly blocked - something that happened a few
> times over the years.


Thank you so much for sharing with me! I hope it is a quick recovery and that this brings me back to normality for a little while


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## 24601

Hi Sara88,
Sorry for the late reply here. I'm in hospital right now so you know how that goes with doctors and nurses in and out taking up your days!!!

I completely understand about the anxiety and all the things you are worried about. I was terrified about my first surgery although probably in a rather blind way because I had never had surgery before and didn't know as many of the things to be worried about!!! But still I was jittery about it beforehand, felt like leaving the hospital the night I stayed before my surgery, was worried about the pain, the incision, the recovery.

And you've really been thrown in the deep end and had these complications so quickly - first the need for surgery so soon after diagnosis and then knowing that the complications that they talk about, for example with the picc line, can actually happen. I think that's extra tough.

Has your surgeon and his nurse talked all this through with you very throroughly? I hope they are making themselves available to you because you deserve the reassurance of being able to talk it all through.

I think a first surgery is hard. For me there was that psychological barrier that I found almost impossible to get over at allowing someone to take a scalpel to me. That may sound pathetic to some people but I don't think it's uncommon and I think it's a pretty natural protective instinct. I am glad that I got over it because I was in so much pain for so long before my first surgery - and for me my bowel scars and gets rigid and hard but doesn't perforate so I had that freedom (if we can call it that lol) to allow myself to suffer for a long long time. But I got such relief from the surgery that I knew afterwards that if I had overcome my fears and resistance to surgery sooner it would have been better for me and to be able to get on with my life. That's not to say I wasn't curled in the fetal for a day or two before my fourth surgery last August. Having been there and done that apparently didn't make it easier - and it's not because my surgeries were all so awful or painful (I don't want to scare you, surgery really often is much easier than living with Crohn's) but I really didn't want to be in hospital again and going the surgery route again. I really just want to say don't feel like you shouldn't be scared or that other people aren't or that we all get over it. I'm there with you - still scared at times!

So scars. Yes, this worried me a lot especially for the first one when I was 22. Mine have all been open surgeries so I have midline incisions. The first was tiny - only about 1 1/2 to 1 3/4 inches curved round my belly button. Now I have a much longer scar though as they've had to lengthen with later surgeries and the areas they needed to access and with the bowel being all stuck together and no longer as mobile that meant bigger incisions. But you go into the surgery not knowing what you'll get - as the surgeons can never be 100% about exactly what surgery they'll perform until they see inside. And even for those planned laparascopic surgeries you have to be prepared that they convert to open if necessary. 

What I found was that even though I was convinced I'd never wear a bikini again, in fact I did happily. I laugh at this now because for the whole summer before my surgery (planned months in advance for August 'cos that's how you want to spend your August!) I wore a bikini as often as possible. But the thing is whatever size or shape of the scar, you are just you with a scar added. It's still your stomach, your body. You don't transform into someone else and scars aren't ugly - at least not to most people and to no one worth caring about. And we need to see them as badges of strength and courage and everything we've been through. I hope you'll feel okay about yours  They fade, they change and if necessary you can have injections into it or corrections made - so just in case you find yours doesn't heal well know that there are potential remedies. Of course we have to accept the idea of a scar when we don't want surgery at all. That's how I felt but I did come to accept it.

My best advice is to look at the incision straight on in good light - preferably sunlight. Don't try and take surreptitious peeks at in the half light as I did because I was too afraid to look 

As to bags, I've no personal experience but it does sound like yours would only be if the tissue is too fragile to reconnect/they'd be removing too much tissue and want to give it a chance to heal instead first and would be temporary so knowing that would hopefully help. Has your surgeon said how likely this scenario is for you? I can only talk about other members experience that I read of but so many people find it a less frightening experience than they thought and cope so admirably well. There should be lots of support from stoma nurses and I know our online community here will want to support you. I don't want in any way to diminish your fears about this. For my first two surgeries my surgeon categorically said he wouldn't be creating a stoma (I'm not sure he could be as sure as he sounded but it reassured me!). For my third and fourth surgeries, my surgeon said he would want to create a stoma if he could but it would be so high that it wasn't desirable or easy and so he couldn't...but he would if he had to. Which was rather convoluted and confusing but enough to raise the possibility again and scare me. I didn't think I'd cope but everyone tells me I would have because you cope with what you have to cope with. I can really only say that I relate to the fear of how I'd cope.

Epidurals are something I can talk about as I've had one with each surgery. When they work they are brilliant and give you a very comfortable first few days and both my surgeons and my anaesthetists favored them for pain relief. They don't always work completely so let them know if your pain coverage isn't good enough. They can increase the rate, change the drug, bolus in an extra dose or move you to a pain pump or injections or oral meds after a couple of days. Whatever pain relief you have always let them know if it's not working for you because they have so many options and they should always be prepared to change to make you comfortable and minimize any side effects. The pain from surgery was so much less the first time than I ever imagined.

One sort of pain you might have that I don't think any meds help with is referred pain in your shoulders (I think this is caused by gas used to expand the abdomen for surgery but not 100% sure). I had this intensely in the first few hours coming round in recovery after my first and second surgeries and the thing that helped was having someone hold heating pads on my shoulders. Made a big big difference . In recovery the nurses are usually amazing and take very good care of you but make sure to tell them if you are cold, in pain, have a dry mouth - they can give you sips of water, ice chips, mouth swabs etc. Ask if you need to change you from an oxygen mask to a tube in your nose as that's less drying for your mouth. And something I've learnt is to ask them if they've removed any excess canulas from the operating theatre - always better than going onto the ward with more lines in you than needed. They love to give you lots of lines in the operating theatre!!!

Anastamotic leaks are usually not too serious and can be drained or treated with antibiotics without need to take you back to surgery. They'll be monitoring you and you should let them know if you start to feel worse. For example if your bowel has been working and then goes quiet. If you have an appetite and then don't want to eat anything. And if you have pain that gets worse! Hopefully they would investigate at the first signs of this. I've only had one leak after my second surgery (and that's more impressive because my first surgery included a resection and 11 strictureplasties so lots of stitching) and I think this was partly caused by my poor healing due to very poor pre-op nutritional status which was overlooked. But more importantly it was probably that they ignored me when I said I was experiencing more pain, couldn't stand up straight or walkk without tears in my eyes and didn't want to eat. My bowel had twisted (so no wonder I was nauseous!), the surgeon covering for mine said there was nothing wrong with me, the nurses made me eat and one of my six strictureplasties leaked. A quick scan would have told them what was going wrong but they didn't oick up on any of the warning signs which they should have. It led to a very long saga which I won't go into and for most the consequences aren't so bad but it has made me very certain that you do unfortunately need to be able to stand firm and tell them in no uncertain terms that you know your body best. If something goes downhill let them know. It should most certainly be investigated!

Despite a further two complicated surgeries with lots of joins I've never had another leak, so I do think that mostly we heal just fine and the move to allowing us to drink from a few hours after surgery and eat lightly as soon as we feel able is a testament to our surgeons confidence in how well most of us heal and the low likelihood of leaks, I think. But do listen to your body as you know your body best. If you need to take things slower let them know!

But do walk, walk, walk after surgery  as soon as you can even though those first few steps are hard. It helps to get the gut moving sooner and you passing gas and having that all important first bm and going home. I think the secret to making walking easier is learning how to get out of bed without pain - for me this meant carefully turning on my side and raising the head of the bed to lift my upper body to almost vertical then using the muscles on the side of my abdomen to get to sitting postion at the same time as swinging my legs to the floor. If the bed is at the right height (which your adjustable hospital bed should be!) then you are basically standing. Obvi get all the help you need to do this until you are practised and those first few times out of bed you'll have a couple of nurses helping anyway! I just thought I'd share my techinique as I didn't learn it the first time and it helped get me much more independent more quickly in hospital the 2nd time, as well as at home, and for the surgeries since!

On the meds chart issue, it never hurts to be a proactive patient so keep asking them questions. Most doctors like it and it keeps them on their toes. I know we're not always well enough to do that and it's not easy but we do also have to faith in the team of professionals looking after us because sometimes that's all we can do. Mostly they are very good at what they do so I hope they take wonderful care of you. But never ever be afraid to speak up, keep notes of what they've said they've ordered and what's actually given. And quiz those pharmacists on drug interactions 

And please do PM me if there's anything you want to chat about or if I can just provide a virtual hand to hold! I definitely understand being worried about all of this :ghug:


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## Caitlin84

The shoulder pain is totally true! It's very common after laproscopic surgery but seems very weird. Tell your nurses everything--the worst that happens is they can't help you, but often they can.


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## DEmberton

Caitlin84 said:


> The shoulder pain is totally true! It's very common after laproscopic surgery but seems very weird. Tell your nurses everything--the worst that happens is they can't help you, but often they can.


I found several days trying to sit up in a hospital bed with uncomfortable pillows gave me shoulder and neck pain.


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## Caitlin84

Hospitals are certainly not the best pace to sleep! The worst really.

The shoulder pain from laproscopic surgery specifically has to do with the gas they fill you with and how it migrates after surgery before it dissipates. It's very weird to expect abdominal pain and then get it mostly in your shoulder.


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## sara88

Caitlin84 said:


> Hospitals are certainly not the best pace to sleep! The worst really.
> 
> The shoulder pain from laproscopic surgery specifically has to do with the gas they fill you with and how it migrates after surgery before it dissipates. It's very weird to expect abdominal pain and then get it mostly in your shoulder.




Omg you are so right about that! I'm out now and feeling ok but my shoulders are. Killing me!!!!!


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## sara88

24601 said:


> Hi Sara88,
> Sorry for the late reply here. I'm in hospital right now so you know how that goes with doctors and nurses in and out taking up your days!!!
> 
> I completely understand about the anxiety and all the things you are worried about. I was terrified about my first surgery although probably in a rather blind way because I had never had surgery before and didn't know as many of the things to be worried about!!! But still I was jittery about it beforehand, felt like leaving the hospital the night I stayed before my surgery, was worried about the pain, the incision, the recovery.
> 
> And you've really been thrown in the deep end and had these complications so quickly - first the need for surgery so soon after diagnosis and then knowing that the complications that they talk about, for example with the picc line, can actually happen. I think that's extra tough.
> 
> Has your surgeon and his nurse talked all this through with you very throroughly? I hope they are making themselves available to you because you deserve the reassurance of being able to talk it all through.
> 
> I think a first surgery is hard. For me there was that psychological barrier that I found almost impossible to get over at allowing someone to take a scalpel to me. That may sound pathetic to some people but I don't think it's uncommon and I think it's a pretty natural protective instinct. I am glad that I got over it because I was in so much pain for so long before my first surgery - and for me my bowel scars and gets rigid and hard but doesn't perforate so I had that freedom (if we can call it that lol) to allow myself to suffer for a long long time. But I got such relief from the surgery that I knew afterwards that if I had overcome my fears and resistance to surgery sooner it would have been better for me and to be able to get on with my life. That's not to say I wasn't curled in the fetal for a day or two before my fourth surgery last August. Having been there and done that apparently didn't make it easier - and it's not because my surgeries were all so awful or painful (I don't want to scare you, surgery really often is much easier than living with Crohn's) but I really didn't want to be in hospital again and going the surgery route again. I really just want to say don't feel like you shouldn't be scared or that other people aren't or that we all get over it. I'm there with you - still scared at times!
> 
> So scars. Yes, this worried me a lot especially for the first one when I was 22. Mine have all been open surgeries so I have midline incisions. The first was tiny - only about 1 1/2 to 1 3/4 inches curved round my belly button. Now I have a much longer scar though as they've had to lengthen with later surgeries and the areas they needed to access and with the bowel being all stuck together and no longer as mobile that meant bigger incisions. But you go into the surgery not knowing what you'll get - as the surgeons can never be 100% about exactly what surgery they'll perform until they see inside. And even for those planned laparascopic surgeries you have to be prepared that they convert to open if necessary.
> 
> What I found was that even though I was convinced I'd never wear a bikini again, in fact I did happily. I laugh at this now because for the whole summer before my surgery (planned months in advance for August 'cos that's how you want to spend your August!) I wore a bikini as often as possible. But the thing is whatever size or shape of the scar, you are just you with a scar added. It's still your stomach, your body. You don't transform into someone else and scars aren't ugly - at least not to most people and to no one worth caring about. And we need to see them as badges of strength and courage and everything we've been through. I hope you'll feel okay about yours  They fade, they change and if necessary you can have injections into it or corrections made - so just in case you find yours doesn't heal well know that there are potential remedies. Of course we have to accept the idea of a scar when we don't want surgery at all. That's how I felt but I did come to accept it.
> 
> My best advice is to look at the incision straight on in good light - preferably sunlight. Don't try and take surreptitious peeks at in the half light as I did because I was too afraid to look
> 
> As to bags, I've no personal experience but it does sound like yours would only be if the tissue is too fragile to reconnect/they'd be removing too much tissue and want to give it a chance to heal instead first and would be temporary so knowing that would hopefully help. Has your surgeon said how likely this scenario is for you? I can only talk about other members experience that I read of but so many people find it a less frightening experience than they thought and cope so admirably well. There should be lots of support from stoma nurses and I know our online community here will want to support you. I don't want in any way to diminish your fears about this. For my first two surgeries my surgeon categorically said he wouldn't be creating a stoma (I'm not sure he could be as sure as he sounded but it reassured me!). For my third and fourth surgeries, my surgeon said he would want to create a stoma if he could but it would be so high that it wasn't desirable or easy and so he couldn't...but he would if he had to. Which was rather convoluted and confusing but enough to raise the possibility again and scare me. I didn't think I'd cope but everyone tells me I would have because you cope with what you have to cope with. I can really only say that I relate to the fear of how I'd cope.
> 
> Epidurals are something I can talk about as I've had one with each surgery. When they work they are brilliant and give you a very comfortable first few days and both my surgeons and my anaesthetists favored them for pain relief. They don't always work completely so let them know if your pain coverage isn't good enough. They can increase the rate, change the drug, bolus in an extra dose or move you to a pain pump or injections or oral meds after a couple of days. Whatever pain relief you have always let them know if it's not working for you because they have so many options and they should always be prepared to change to make you comfortable and minimize any side effects. The pain from surgery was so much less the first time than I ever imagined.
> 
> One sort of pain you might have that I don't think any meds help with is referred pain in your shoulders (I think this is caused by gas used to expand the abdomen for surgery but not 100% sure). I had this intensely in the first few hours coming round in recovery after my first and second surgeries and the thing that helped was having someone hold heating pads on my shoulders. Made a big big difference . In recovery the nurses are usually amazing and take very good care of you but make sure to tell them if you are cold, in pain, have a dry mouth - they can give you sips of water, ice chips, mouth swabs etc. Ask if you need to change you from an oxygen mask to a tube in your nose as that's less drying for your mouth. And something I've learnt is to ask them if they've removed any excess canulas from the operating theatre - always better than going onto the ward with more lines in you than needed. They love to give you lots of lines in the operating theatre!!!
> 
> Anastamotic leaks are usually not too serious and can be drained or treated with antibiotics without need to take you back to surgery. They'll be monitoring you and you should let them know if you start to feel worse. For example if your bowel has been working and then goes quiet. If you have an appetite and then don't want to eat anything. And if you have pain that gets worse! Hopefully they would investigate at the first signs of this. I've only had one leak after my second surgery (and that's more impressive because my first surgery included a resection and 11 strictureplasties so lots of stitching) and I think this was partly caused by my poor healing due to very poor pre-op nutritional status which was overlooked. But more importantly it was probably that they ignored me when I said I was experiencing more pain, couldn't stand up straight or walkk without tears in my eyes and didn't want to eat. My bowel had twisted (so no wonder I was nauseous!), the surgeon covering for mine said there was nothing wrong with me, the nurses made me eat and one of my six strictureplasties leaked. A quick scan would have told them what was going wrong but they didn't oick up on any of the warning signs which they should have. It led to a very long saga which I won't go into and for most the consequences aren't so bad but it has made me very certain that you do unfortunately need to be able to stand firm and tell them in no uncertain terms that you know your body best. If something goes downhill let them know. It should most certainly be investigated!
> 
> Despite a further two complicated surgeries with lots of joins I've never had another leak, so I do think that mostly we heal just fine and the move to allowing us to drink from a few hours after surgery and eat lightly as soon as we feel able is a testament to our surgeons confidence in how well most of us heal and the low likelihood of leaks, I think. But do listen to your body as you know your body best. If you need to take things slower let them know!
> 
> But do walk, walk, walk after surgery  as soon as you can even though those first few steps are hard. It helps to get the gut moving sooner and you passing gas and having that all important first bm and going home. I think the secret to making walking easier is learning how to get out of bed without pain - for me this meant carefully turning on my side and raising the head of the bed to lift my upper body to almost vertical then using the muscles on the side of my abdomen to get to sitting postion at the same time as swinging my legs to the floor. If the bed is at the right height (which your adjustable hospital bed should be!) then you are basically standing. Obvi get all the help you need to do this until you are practised and those first few times out of bed you'll have a couple of nurses helping anyway! I just thought I'd share my techinique as I didn't learn it the first time and it helped get me much more independent more quickly in hospital the 2nd time, as well as at home, and for the surgeries since!
> 
> On the meds chart issue, it never hurts to be a proactive patient so keep asking them questions. Most doctors like it and it keeps them on their toes. I know we're not always well enough to do that and it's not easy but we do also have to faith in the team of professionals looking after us because sometimes that's all we can do. Mostly they are very good at what they do so I hope they take wonderful care of you. But never ever be afraid to speak up, keep notes of what they've said they've ordered and what's actually given. And quiz those pharmacists on drug interactions
> 
> And please do PM me if there's anything you want to chat about or if I can just provide a virtual hand to hold! I definitely understand being worried about all of this :ghug:


Thank you so much this was very informative and helped me a lot in what to expect. I am doing ok so far ..there is a lot of pain but I have an epidural which is only working on one side for whatever reason


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## Caitlin84

Sara88, How are you doing now? Any complications? Are you feeling better?


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## sara88

Caitlin84 said:


> Sara88, How are you doing now? Any complications? Are you feeling better?


Hi Caitlin 
Thank you for asking! I am feeling a bit better I had my surgery on July 10th I was in the hospital for 7 days after ..everything was going great until my surgical wound opened on me :s Now I have to go to a clinic every two days and have it packed until it heals ..pretty gross and very painful but it's slowly happening.


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## sara88

Caitlin84 said:


> Sara88, How are you doing now? Any complications? Are you feeling better?



In terms of the actual crohns and intestinal aspect though I've never felt better I am eating everything and my bowels are better than they have ever been..not 100 percent normal yet but that is to be expected


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## DEmberton

Good to hear about the good. Sorry about the bad.

I did enjoy the being able to eat lots period of recovery.


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## Caitlin84

Sara,
   Sorry to hear about the incision complications. Glad the GI stuff is so much better. I'm going in for a resection on Tues and very much hoping that will be the start of feeling better. Would you be willing to share what all they removed and how much? I'm going to be losing some of my large intestine and some of my small--and I assume the appendix since that part of the intestine will be gone.


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## sara88

Caitlin84 said:


> Sara,
> Sorry to hear about the incision complications. Glad the GI stuff is so much better. I'm going in for a resection on Tues and very much hoping that will be the start of feeling better. Would you be willing to share what all they removed and how much? I'm going to be losing some of my large intestine and some of my small--and I assume the appendix since that part of the intestine will be gone.[/QUOTE
> 
> 
> Good luck on your surgery! I'm glad I did mine and I'm sure you will be as well ..they removed 10 cm from my colon and 7 from the small as well as my appendix which was the size of a lemon from all the inflammation that's why they couldn't do it all laparoscopically and it was my incision that opened ..otherwise the week in the hospital after there was pain and bloating and when you start passing gas and eventually going to the bathroom the gas pain sucks but it's all in all not too bad and you will be so thankful you did it. I wish you the best of luck and keep us posted on how you are doing. Xo


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## Caitlin84

Well, I'm a week post op today and starting to feel better. Still not eating a lot and sticking to very bland foods. My incision pain isn't bad and I haven't had any pain like I had before the surgery. Biggest issue had been nausea and diarrhea, but I'm mostly keeping that under control now too. I have some hope for the first time in months. I feel like I might actually be able to get my life back. =)


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## highlandsrock

Caitlin84 said:


> Biggest issue had been nausea and diarrhea, but I'm mostly keeping that under control now too.


Hi Caitlin, I had the same problems after surgery. Nobody mentioned them as potential issues but at least the nausea passed after a week. Hope the rest of your recovery goes well


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## sara88

Caitlin84 said:


> Well, I'm a week post op today and starting to feel better. Still not eating a lot and sticking to very bland foods. My incision pain isn't bad and I haven't had any pain like I had before the surgery. Biggest issue had been nausea and diarrhea, but I'm mostly keeping that under control now too. I have some hope for the first time in months. I feel like I might actually be able to get my life back. =)


Good to hear Caitlin! Things will only get easier from here ..I am still struggling with diarrhea here and there but I think that's typical while your gut heals and now we both don't have our caecal valve which will cause the stool to be softer than normal anyway. Keep on recovering and hope you feel 100 percent soon


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## highlandsrock

It's worth asking about BAM (Bile Acid Malabsorption). I had 140mm of small bowel, including the valve, removed and I now have severe BAM. Just having that diagnosis has helped me understand why I still have to rush to the bathroom on occasions. I seem to be able to control it with 2 or 3 Looeramide capsules a day


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## DEmberton

They didn't tell me about BAM until after the surgery, but fortunately I've only a couple of times had to rush to the toilet in the year since so it doesn't seem to be a big problem for me.

It took about 2 weeks before I had normal BMs, so I wouldn't worry about anything at this stage. I had a lot of nausea when I was in hospital, but it got a lot better once I managed to eat. They sent me home with a week's worth of anti-nausea drugs, but after a couple of days I thought "why am I taking these?" and stopped. After that I felt much better.


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## highlandsrock

The nausea and the hiccups that were the worst part of being in hospital. The surgeon said about 25% of patients went into a lockdown of the digestive system (gastric statis). Just wish I'd been warned. Once it passed I ate like a horse and knew I'd turned the corner. Was ready for it when I had my reversal op, although it was still pretty awful


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## DEmberton

I had a couple of days of feeling like the bile was constantly at the back of my throat, and I was sick a couple of times whilst trying to swallow pills (which meant I missed out on a dose of pain killers). 

Worst thing was although I kept sipping water none of it was coming out, so they decided my bladder wasn't working. They brought round a machine to scan my bladder, which showed it as being empty but they were unsure if the machine was telling the truth, so decided they had to put a catheter back in which I really wasn't happy about. Fortunately the doctor then had a change of heart and decided to give me a drip to hydrate me to see if that would work. I've never been so happy to need to pee.:biggrin:

On day three it took me a couple of hours to get down a tuna sandwich, but as soon as I did I started feeling better. And then once I got home I just got better and better day by day. Take it easy, but going for walks did help a lot.

That was then. The result was so worth it.


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