First resection

[Emily517]

Hi everyone! I'm new to the forum, but not to Crohn's Disease. I was diagnosed 14 years ago and have been managing my disease through nutrition and medication. I can't tell you how many times I feel alone and depressed with this disease. It never occurred to me to reach out to anyone that has Crohn's until recently. I'm so glad to have found this forum not only to help me, but also if I can offer help or advice to anyone else.

Just a little background on my disease. I developed a anal fistula and fissure. They tested tissue and found out I had Crohn's. I was referred to a GI who performed a colonoscopy and confirmed Crohn's on my terminal ileum. I went to my first GI for about a year and left because of some issues with his care and concern about the medication I was taking. I couldn't convince him that it was making me sick. So I decided on another GI (he seriously is the best) and told him about my concerns with the medication and he advised to start taking it again, but call him with any issues. I ended up getting pancreatitis. After that it has been one medication after another - Prednisone, Entocort, Pentasa, Methotrexate, etc. I'm currently taking Humira.

As many of you know with this disease, you have good days and bad days. The past 7 months has been rough and I haven't been able to control my symptoms or pain. A recent CT scan showed moderate inflammation and narrowing of my terminal ileum (about 6 inches from what they could see). I've been on so many medications and increasing my Humira shot weekly hasn't seemed to help so my GI referred me to a general surgeon. I met with the surgeon (he did surgery on my anal fistula and fissure when I was first diagnosed) and he scheduled me for a laparoscopic ileocolic resection on November 11.

I know this is a pretty common surgery, especially for Crohn's patients, but I'm still scared and nervous about surgery and the recovery. I know in the end it will be worth it, but just waiting out the next five weeks is rough.
If anyone has advice or kind words I could really use them.

 

[hawkeye]

There are some good overviews here of various types of resections (small / large intestine and open/lapro) -

http://www.crohnsforum.com/showthread.php?t=30212

The tread was a good read before I had my resection earlier this year. When the meds don't seem to be as effective and the surgeon says it's not a quesiton of if you need surgery but when you need it, it is the time to start considering it.

 

[ronroush7]

Welcome to the group. I had a resection four years ago. You will be fine. The worst part was the first day afterwards when they tried to get me up to walk . Try to walk at least twice a day. Bring books or anything to keep you occupied. Sending prayers. Keep us updated on how you are doing.

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[Emily517]

Thank you Hawkeye for the link to the forum. This is really helpful and reading some of the experiences has already put my mind at ease.

Ronroush, thank you for the tips on walking. And for the prayers. That means a lot. And I hope to have great news to share after surgery.

 

[syzygy]

Best of luck to you. This place has been great as a place to learn, vent, or reach out depending on what kind of day it's been. I haven't had a resection myself, but my GI has told me that she thinks it's in the cards for me in the future (because my symoms are primarily obstructive). She recently gave me the warning that if I ended up in the hospital again she'd probably refer met to Boston for surgery. She was reassuring though and said that it's a pretty routine surgery now and that lots of people get almost complete relief for a while afterwards.

The waiting game is rough. I've been impatient to get started with Remicade since finally caving and agreeing to start that. Nine more days to go.

 

[Justanothercp]

Emily, I had a resection about 12 years ago. It gave me my life back, wish I had done it sooner. Surgery is always scary, never fun, but I think you will be happy you did it. Hopefully you will feel a lot better and be able to reduce your meds.
Keep us posted!

 

[Muppetgirl]

Hi Emily and welcome. Sorry you have had a rough time of it over the 14 years. I had a resection lower down in the bowel. I like to use the 'run up' to get prepared: make the house super clean, buy myself new comfy nightwear, track down films, tv shows that I want to watch etc. Basically putting my nervous energy into other things.

It is a common surgery round these parts but its still a big undertaking for your body. Listen to it afterwards and go at the pace it tells you is right. Remember that it will probably be worse before its better. Definately follow your docs advice around what to eat etc, there can intially be trials and tribulations when the digestive systems gets up and running. Also if you have any sudden severe pain once you are home, don't hesistate, ring your hospital and tell them the op you just had. I don't say that because it's likely to happen, more because it's important to act in the event that it did.

You've gotten this far. You can get through this too. Good luck. Keep us posted.

 

[DJW]

Hi Emily and welcome.

I'm sorry you're facing surgery. One thing I've found helpful is just writing all my concerns down on paper (something I need to do again).

I've been through many surgeries. Never liked them but always felt better after.

Sending you my support.

 

[blueskies]

Hi Emily
I think we may be in the exact same situation! I am diagnosed with crohns 16 years and I am scheduled to have that same resection at the end of the month. I totally understand what you are going through, I have just posted on this thread also, I am reading other posts on surgeries and most seem to conclude that it is worth it in the end. Its just all so new.
blueskiesx

 

[ronroush7]

Keep us updated.

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[ronroush7]

Support to both of you.

2

 

[alex_chris]

As many of you know with this disease, you have good days and bad days. The past 7 months has been rough and I haven't been able to control my symptoms or pain. A recent CT scan showed moderate inflammation and narrowing of my terminal ileum (about 6 inches from what they could see). I've been on so many medications and increasing my Humira shot weekly hasn't seemed to help so my GI referred me to a general surgeon. I met with the surgeon (he did surgery on my rectum fistula and fissure when I was first diagnosed) and he scheduled me for a laparoscopic ileocolic resection on November 11.

Hi there, my diagnosis also started with an anal fistula and abscess, but you seem to have managed much longer than me without surgery. I basically had the same diagnosis, a stricture of about 8 inches in the terminal ileum (it turned out during surgery there were two more strictures). That was 11 years ago and 3 1/2 years after diagnosis. Things have been good several years after surgery, then a few up and down years and for the last 2 1/2 years I have been in the best remission phase since my duagnosis.

I know this is a pretty common surgery, especially for Crohn's patients, but I'm still scared and nervous about surgery and the recovery. I know in the end it will be worth it, but just waiting out the next five weeks is rough.

Here are a few things relating to my surgery:

1. First, my surgeon was big on having a bowel that was completely rested and inactive during surgery and completely clean. So I had 4 liters of prep at home and then 4 days in the hospital with no food, just water and tea and in between another 3-4 liters of another prep liquid. So have lots of light reading materials, music etc. Around to kill time.

2. Surgery was originally scheduled as laparoscopic, but due to the extent of the three strictures and a stricturplasty performed they had to open up my belly (vertical incision across my belly button). I am just telling you that, because I was waking up and pretty shocked seeing the large incision. But I guess my case was more the exception rather than the norm.

3. You are on pain meds the first few days IV, but things still hurt unfortunately. It gets better usually on about day three I understand, but that varies very much on the case. They told me the sooner you get off the heavy pain meds and start walking regularly, the better and the sooner you heal and go home. I started walking slowly every few hours on day 3. It's hard but it really helps.

4. I couldn't sleep post surgery and they only gave me an effective sleeping pill on day three. Having said that, if you can't sleep insist on a pill, not sleeping is horrible,I got hugely depressed and nearly hallucinative from the combination of pain, no food, and no sleep.

5. As to food, again my surgeon was very cautious, so I remained on just tea the first 4 days, then I got soup, some porrridge and cooked unsweetened pealed apple pieces. As to the food, make sure people know you are a Crohn's patient. I had two spoons of the soup (which was very salty) and asked and it turned out they gave me the wrong food tray.

6. I got out of the hospital 7 days later and had little pain any more. No pain meds were prescribed, I just carried on with azathioprine. The surgery wound healed in the next weeks, although there was a secondary wound infection in week 3 ( playing tennis a bit less thab 3 weeks after surgery against my surgeon's advice isn't recommended). I think things were fine with bowel movements, the scar and generally about 6-7 weeks after surgery and completely fine after 3 months after surgery.

7. On weight, not sure if you got problems with it. I am 170lbs (77kg) now at 5 feet 11 and back then was only 60kg before and 56kg (125lbs) at the lowest point after surgery which was pretty bad. I was on eternal nutrition models augmenting normal meals for nearly 8 months following surgery to get to 70kg again.

Anyway, the decision for surgery was right, those strictures don't go away but just get worse. I hope things go well for you and that you can manage your Crohn's without any flares post surgery long term.

 

[hawkeye]

4. I couldn't sleep post surgery and they only gave me an effective sleeping pill on day three. Having said that, if you can't sleep insist on a pill, not sleeping is horrible,I got hugely depressed and nearly hallucinative from the combination of pain, no food, and no sleep.

This is a great point. I wish I had requested this. I slept, but not well.

 

[Miss Gypsy]

Hey Emily! I am also having surgery on my terminal ileum. I am having problems with recurring abscesses so they're just taking out the problem area. Haven't scheduled it yet because apparently they want a urologist there to put in a stint, so they're still coordinating schedules. But it sounds like it will be in November. This is my first surgery too so I can't offer advice but if you want some support, I'd be happy to message back and forth. Let me know.Either way, best of luck to you!

 

[DEmberton]

Mine was 3 months ago. I've been so much better since; it was certainly worth it. Try to focus on that.

They let me leave hospital on the 5th day as I was able to eat normally by then. After another 4 or 5 days at home the pain largely went away, except for first thing in the morning, and I was able to start to get back to some kind of normality. You'll have to avoid doing anything strenuous for a while, and you will be quite weak so take it easy and don't rush the recovery.

Hope it all goes well.

 

[DEmberton]

4. I couldn't sleep post surgery and they only gave me an effective sleeping pill on day three.

I didn't sleep at all the first night, and not much the second (Germany's 7-1 defeat of Brazil kept me entertained). Having a catherter and a drip didn't help; the third night I was free of tubes and slept like a log.

7. On weight, not sure if you got problems with it. I am 170lbs (77kg) now at 5 feet 11 and back then was only 60kg before and 56kg (125lbs) at the lowest point after surgery which was pretty bad. I was on eternal nutrition models augmenting normal meals for nearly 8 months following surgery to get to 70kg again.

I'm a 6 foot male, and I was down to 57Kg at worst which was when the GI told me I had Crohns and would need surgery. He said the main thing was to try to get me in as good a condition as possible for the surgery and suggested "chips and mars bars". I couldn't manage the chips, but had 3 or 4 mars bars a day, plus an Ensure shake in the morning and Complan in the evening. They arranged for me to talk to a nutritionist too, though she mostly said I was eating okay. In the 6 weeks I did get back to almost 60Kg.

After surgery I gained the weight back pretty rapidly just from eating normally. 2 months later it was 72Kg and I'm about 76Kg now, which is about my normal weight. Amazing really - it took 2 years to lose 25% of my body weight, and 2 months to put it back on.

 

[alex_chris]

Hey there, I would recommend not to continue with the 3-4 Mars bars and chips diet "recommended" by your GI. Your GI really said that?

 

[DEmberton]

Hey there, I would recommend not to continue with the 3-4 Mars bars and chips diet "recommended" by your GI. Your GI really said that?

He said "the nutritionists really hate it when I say this, but chips and mars bars". :lol2: But that was only meant to be for a couple of weeks to try to gain a bit of weight pre-surgery, not a long term diet suggestion.

 

[highlandsrock]

Four years ago, at this time and date, I was waiting to be moved from Recovery to the High Dependency Unit after my ileostomy. I lost 5 kilos during my hospital stay and it was important to put it back on. The nutritionalist advised me to embark on a diet of crisps, crackers and doughnuts (and that was just between meals) once I returned home. I also had to fit in 3 high nutrition drinks (3 x 300cal). I kept this up for a number of weeks and felt mixed emotions of guilt and enjoyment!

I recorded the lead up to surgery and subsequent recovery here - Getting-ready-for-admission.html

 

[UnXmas]

1. First, my surgeon was big on having a bowel that was completely rested and inactive during surgery and completely clean. So I had 4 liters of prep at home and then 4 days in the hospital with no food, just water and tea and in between another 3-4 liters of another prep liquid. So have lots of light reading materials, music etc. Around to kill time.

Interesting - my surgeon has been the complete opposite. Before my colectomy, I had an enema, and that was it. I've had numerous other surgeries, including two to create stomas, where I had no prep at all, just didn't eat on the morning of the surgery. From what I've read, this is unusual, though I can't say I didn't appreciate avoiding days of fasting and preps! My most recent surgery, by a different but just as brilliant surgeon, was an emergency, also creating a stoma, and there was not time to do a prep. I had no complications as a result of having no prep, so it made me wonder how necessary preps are - whether I've just been lucky to have no complications, or whether clearing out the bowel before surgery is just taking every possible precaution. But then, with my emergency surgery, my bowel had already perforated, and I had to have a drain for a few days to get all the bowel contents out of my abdomen, so obviously bowel contents present during a surgery can be a big issue.

5. As to food, again my surgeon was very cautious, so I remained on just tea the first 4 days, then I got soup, some porrridge and cooked unsweetened pealed apple pieces. As to the food, make sure people know you are a Crohn's patient. I had two spoons of the soup (which was very salty) and asked and it turned out they gave me the wrong food tray.

My experiences with food have been different too - my first surgeon always lets me eat what I like, solid food right after surgery - as in, as soon as I wake up they bring me sandwiches and ice cream and biscuits - not that I'm always able to eat it. Only after my emergency surgery was I restricted - I was on total bowel rest at first, receiving TPN, but within a couple of days they had me on pureed and soft foods again. Maybe because I'm underweight they think it's more important that I eat? I do know TPN is very dangerous, so they want you on normal food as soon as possible.

3. You are on pain meds the first few days IV, but things still hurt unfortunately. It gets better usually on about day three I understand, but that varies very much on the case. They told me the sooner you get off the heavy pain meds and start walking regularly, the better and the sooner you heal and go home. I started walking slowly every few hours on day 3. It's hard but it really helps.

4. I couldn't sleep post surgery and they only gave me an effective sleeping pill on day three. Having said that, if you can't sleep insist on a pill, not sleeping is horrible,I got hugely depressed and nearly hallucinative from the combination of pain, no food, and no sleep.

After my last surgery, I was surprised how little pain I had in the days after surgery. I had IV oxycodone and a pain-specialist nurse came and told me to press the button to give myself a dose of it as often as I wanted - she said press it even if you're not in pain, press it all the time so the pain doesn't get a chance to start. I really wish I had not followed this advice. After a few days they took the button away and I went through horrendous withdrawal. Another pain-specialist nurse told me I had not been on it long enough to get withdrawal, but that was definitely what I had. I would have taken the pain of the surgery over the withdrawal any day - and that's not just an abstract speculation; I've had other surgeries with no pain meds afterwards, and yes, the pain was awful, but it was not like the withdrawal.

The sleeping thing was tied up with this for me too - I couldn't sleep at all when in withdrawal, but I generally can't sleep after surgeries. I'm on a regular sleep-med, that knocks me out completely every night, but for some reason it has no effect after surgery. I know when I'm recovering, because I can sleep again. My first good night's sleep after surgery is a major milestone.

Emily517 - I hope all goes well for you. I am so much better off for having had surgeries. My best advice is to make sure you have a surgeon who you trust. I have had two superb surgeons. You are completely vulnerable to them, but it is such a good feeling for me, when they are taking me into theatre, and I know that when I wake a part of my illness, or a particular problem, will have been fixed. You may not know exactly what's going to take place - the surgery may not go exactly according to plan, but you know your surgeon is going to do everything he or she can to make you as well as possible.

After my recent experiences, I would go easy on the pain meds! Ask for something to help you sleep if you need it, sleep is so important. Get up and walk around when you are allowed to, don't push yourself too hard though - you'll know when you're feeling better and are up to doing more. I hope all is well!

 

[UnXmas]

Hey there, I would recommend not to continue with the 3-4 Mars bars and chips diet "recommended" by your GI. Your GI really said that?

My surgeon also specified Mars Bars! I am extremely underweight, went through major emergency surgery when I only weighed about 30kg (yes, I really am that underweight - and that was not my lowest). I had a couple of days of bowel rest on TPN, then my surgeon said, eat what I like as long as it's "soft and squidgy" - i.e. she didn't want me eating fibre yet. She knew I already kept to a low-fibre diet and did not need to be advised on diet as people do when they are new to it, as she knew I'd had a stoma for a while and knew what to eat and what to avoid. Her example of "squidgy" food was a Mars Bar.

I know good nutrition is important long term, but there's no reason Mars Bars cannot be included in that. If your priority is keeping your weight up, there is something to be said for eating what appeals to you. I didn't go for the Mars Bar, seemed to rich for me. I ate a lot of sweets and toffees during my recovery, as I could pick at them between meals, which was not so overwhelming as sitting down to extra plates of food.

 

[Absentminded]

Interesting - my surgeon has been the complete opposite. Before my colectomy, I had an enema, and that was it. I've had numerous other surgeries, including two to create stomas, where I had no prep at all, just didn't eat on the morning of the surgery. From what I've read, this is unusual, though I can't say I didn't appreciate avoiding days of fasting and preps! My most recent surgery, by a different but just as brilliant surgeon, was an emergency, also creating a stoma, and there was not time to do a prep. I had no complications as a result of having no prep, so it made me wonder how necessary preps are - whether I've just been lucky to have no complications, or whether clearing out the bowel before surgery is just taking every possible precaution. But then, with my emergency surgery, my bowel had already perforated, and I had to have a drain for a few days to get all the bowel contents out of my abdomen, so obviously bowel contents present during a surgery can be a big issue.

I've never had prep before surgery either. I also had an enema just before going in for my first surgery (although I had been on fortisips only for ten weeks prior to surgery so I was pretty clear.) My 2nd, 3rd and 4th I wasn't allowed food from midnight and NBM after 6 am.

 

[alex_chris]

I've never had prep before surgery either. I also had an enema just before going in for my first surgery (although I had been on fortisips only for ten weeks prior to surgery so I was pretty clear.) My 2nd, 3rd and 4th I wasn't allowed food from midnight and NBM after 6 am.

The reason my surgeon wanted to have my intestine completely clean and at rest before surgery is principally the problem of sepsis from nutrition remaining in the intestine at surgery. In addition, it was explained to me that a completely clean and at rest bowel heals better in the first few days (it was explained to me that the concept was similar to cleaning an incision area before incision and keeping it clean for the first few days after the surgery in order to avoid infection and inflammation of that area due to external bacteria or any other material coming in contact with the incision area).

 

[UnXmas]

The reason my surgeon wanted to have my intestine completely clean and at rest before surgery is principally the problem of sepsis from nutrition remaining in the intestine at surgery. In addition, it was explained to me that a completely clean and at rest bowel heals better in the first few days (it was explained to me that the concept was similar to cleaning an incision area before incision and keeping it clean for the first few days after the surgery in order to avoid infection and inflammation of that area due to external bacteria or any other material coming in contact with the incision area).

Sorry if this is a really dumb question, but isn't sepsis infection of the bloodstream? I had an infection recently from a central line and was told I had sepsis as the infection was in my blood. So did your surgeon mean he was trying to avoid bowel contents getting into your blood?

 

[DustyKat]

It would seem that bowel prep differs from surgeon to surgeon and there is no longer any hard and fast rules.

Neither of my children had bowel prep, just the stock standard 8 hours of fasting prior to surgery, well one was an emergency but she was NBM anyway.

Sepsis is an infection of the bloodstream. Perhaps what Alex is alluding to is faecal matter leaking into the abdominal cavity which in turn causes peritonitis, this then has the potential to cause septicaemia.

Dusty. xxx

 

[DEmberton]

8 hours? I was told 24, and by the time I had the surgery it would have been 30 hours.

No prep. They said it wasn't necessary for small bowel surgery, but would have been for the colon.

 

[UnXmas]

8 hours? I was told 24, and by the time I had the surgery it would have been 30 hours.

No prep. They said it wasn't necessary for small bowel surgery, but would have been for the colon.

In the days when I still had a colon, I didn't prep before colon surgery either. I'd drink on the morning of the surgery, a few hour before. No food after midnight for a morning surgery.

I have terrible reflux too, and the main reason they don't want you to eat or drink before surgery is because you might bring stuff up and choke on it when under anaesthetic, so they usually load me up with reflux meds, though I'm not sure how much good they do. :confused2:

 

[DustyKat]

It is normally a midnight fast for an am surgery and 5 or 6 am fast after a light breakfast (tea and toast) for a pm surgery. No doubt with intestinal surgery each surgeon will have their own preferences on prep and fasting. From an anaesthetics point of view the regimen I have just quoted is the norm for any surgery that requires a full anaesthetic, 8 hours of fasting to reduce the risk of aspiration of food from the stomach into the lungs. When you are conscious you have a gag reflux that prevents food going ‘down the wrong way’, you lose that reflex when you are anaesthetised.

Dusty.

 

[DEmberton]

Come to think of it, when I initially met the surgeon he said up to midnight before would be fine, which surprised me. It was when I had a pre-op assessment the nurse (and the bumpf she gave me) said 24 hours.

 

[highlandsrock]

For my first op in 1979 there was no prep as it was an emergency but afterwards I was fed intravenously for a couple of weeks. That was the regime then.

For the next operation - October 2010 - I was on the Enhanced Recovery Scheme and was amazed to find that I could have dinner the night before and then two cartons of carb loading drink at 2:00am ready for surgery at 8:00am. After the op they now encourage you to eat as soon as possible, no more catheters into the arm.

For anaesthetic I had an epidural and was surprised how pain free the whole process was. I then went on to ordinary paracetamol for a few days and that was it

 

[alex_chris]

It's interesting to hear that most people can eat right before the surgery. I googled a bit and most of the stuff on the internet says exactly what people here said, only required prep for a small bowel surgery is nothing to eat and potentially a prep on the evening before surgery.

 

[ronroush7]

I was on TPN for weeks before the resection and it seemed like a while later before I could eat solid food.

2

 

[UnXmas]

For my first op in 1979 there was no prep as it was an emergency but afterwards I was fed intravenously for a couple of weeks. That was the regime then.

For the next operation - October 2010 - I was on the Enhanced Recovery Scheme and was amazed to find that I could have dinner the night before and then two cartons of carb loading drink at 2:00am ready for surgery at 8:00am. After the op they now encourage you to eat as soon as possible, no more catheters into the arm.

For anaesthetic I had an epidural and was surprised how pain free the whole process was. I then went on to ordinary paracetamol for a few days and that was it

At my recent emergency surgery I found the NHS has now expanded their Enhanced Recovery Program to include emergency surgeries as well.