# Surgery?



## Daunting (Jul 22, 2013)

Good Day All.

Hope everyone is having an Okay day. 

I was doing some reading this weekend about surgeries and when they do them. I was noticing that in some countries patients tend to have surgeries rather quickly while other countries prefer to exaust all medications or wait till there is no choice. 
Elective vs Emergency.

Which is better. It appears that since I am in Canada it is Emergency.


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## nogutsnoglory (Jul 22, 2013)

It's always best to exhaust all medical options before undergoing surgery but sometimes operations are a necessity. It depends on your condition. Are you severely inflamed, have scar tissue, strictures or obstructions? What's going on with you?


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## Daunting (Jul 22, 2013)

HI.

I dont consider myself too too bad, still have lots of pain.

I am presently on 9mg of entocort, and the doctor is considering Imuran as everytime I go lower than 9mg I flare, so i am steroid dependant. But he said sometimes the side effects of Entocort are less severe thant he side effects of Imuran. He has also that some doctors keep there patients on entocort for quite some time. The funny thing my Gi said was I do not have alot of damage and my intestines should not be acting this badly. :ybatty:

I was just snooping at surgery options, I know I shouldnt of, but I have read a few posts and I was just curious. Odd how some countries are pro surgery and others aren't. 

I wonder which is better.


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## DJW (Jul 22, 2013)

I'm in Canada also. My surgeries always came after all other options were exhausted. surgery isn't a cure and crohn's can return. I'm down to 1.5 m of small intestine. Now they really don't want to operate anymore. Hope this is helpful.


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## nogutsnoglory (Jul 22, 2013)

Which countries do you see as pro-surgery. I think it's pretty standard that all medical options are exhausted before surgery is considered.


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## alex_chris (Jul 23, 2013)

Daunting said:


> I was just snooping at surgery options, I know I shouldnt of, but I have read a few posts and I was just curious. Odd how some countries are pro surgery and others aren't.
> 
> I wonder which is better.


I actually don't think it's a question of countries, but it is a question of doctors. I had surgery in 2003 to remove two rather narrow strictures. This was necessary to avoid any blockage down the line. It basically was the last resort. Balloon dilation wouldn't work at the position of the strictures and the strictures were too extensive and developed for medication to help.

If you are considering surgery it should be because you want to avoid emergency surgery. I don't think there really is any other valid argument for surgery if the medical route has not been exhausted.


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## hainman (Jul 23, 2013)

Im due in for surgery tomorrow,having been through all the meds available its the end of the line for me,so i have ran my course and now surgery is my only option,but luckily i have had a while to get my head round the fact....


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## Daunting (Jul 23, 2013)

@ hainman
What type of surgery are you going for

Hi all

I just wonder sometimes if surgery is better than going through all the meds and the potential side effects, when ultimately surgery seems to come next


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## 2thFairy (Jul 23, 2013)

Daunting said:


> I just wonder sometimes if surgery is better than going through all the meds and the potential side effects, when ultimately surgery seems to come next


Not necessarily.  Many people with IBD never have surgery and do well on medication only.


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## hainman (Jul 31, 2013)

@Daunting i just had the rest of my colon removed,rectum back passage and stoma,just home after a week in hospital.....


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## Essieluv (Jul 31, 2013)

I know surgery is serious, but most of the meds we are on are, too. I just feel like, instead of exhausting all other options so that we are only left with a surgery that may not even work, why not throw surgery somewhere in the middle? Just my opinion though


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## alex_chris (Aug 1, 2013)

Essieluv said:


> I know surgery is serious, but most of the meds we are on are, too. I just feel like, instead of exhausting all other options so that we are only left with a surgery that may not even work, why not throw surgery somewhere in the middle? Just my opinion though


Because, at least if we are talking about a partial resection of inflammed parts of the small bowel, you need to continue medical treatment anyway after the surgery. So, why go for surgery if that does not change that you have to take medication? 

There are valid reasons why surgery is performed, I do, however, not think the argument "I take surgery over long term medication" works.


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## Daunting (Aug 2, 2013)

Wow 

I never thought surgery could be such a touchy subject, so many opinions. AND there is nothing wrong with that. 
As for myself, I think I will play it by ear, I am terrified of the Bio-logics but sometimes I feel that allowing the decision to my doctor is the best result as he is the one more familiar with the disease and I need to trust him. 
I hope I am doing the right decision


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## nogutsnoglory (Aug 2, 2013)

I don't know if its a "touchy" subject. I think you will find most of us here are "pro-surgery" and have had it but that being said pro during the proper circumstances. It's a serious decision and unless its an emergency, the doctor and patient really need to be confident that they have done everything they can before taking the next intervention.


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## alex_chris (Aug 3, 2013)

nogutsnoglory said:


> I don't know if its a "touchy" subject. I think you will find most of us here are "pro-surgery" and have had it but that being said pro during the proper circumstances. It's a serious decision and unless its an emergency, the doctor and patient really need to be confident that they have done everything they can before taking the next intervention.


100% agree and I have yet to meet a GI OR surgeon who disagrees with this approach. Operate only if really, really necessary for the patient's circumstances to improve long term and/or to avoid short and mid term danger.


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## Daunting (Aug 3, 2013)

My reasoning for talking about surgery is right now my doctor is just playing around with steroids and maybe introducing Imuran to the mix, as I am still flaring on the Entocort.  As far as I am told I have it in my ileum only, and was wondering if the Imuran doesn't work if it would be better for me  to consider surgery to remove it instead of trying the bio-logics. I know a few people at my  work who have done this and are doing very very  well. I work in a building with about 900 co-workers. I know surgery is scary but so are the meds, but I do realize that not all people do well with surgery or the bio-logics. They are both coin tosses.. I may just talk to my Gi and ask him his opinion.


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## alex_chris (Aug 4, 2013)

Daunting said:


> My reasoning for talking about surgery is right now my doctor is just playing around with steroids and maybe introducing Imuran to the mix, as I am still flaring on the Entocort.  As far as I am told I have it in my ileum only, and was wondering if the Imuran doesn't work if it would be better for me  to consider surgery to remove it instead of trying the bio-logics. I know a few people at my  work who have done this and are doing very very  well. I work in a building with about 900 co-workers. I know surgery is scary but so are the meds, but I do realize that not all people do well with surgery or the bio-logics. They are both coin tosses.. I may just talk to my Gi and ask him his opinion.


I have Crohn's concentrated in the ileum. I had surgery to remove strictures and inflammed parts of the ileum. I was put on imuran from day one again after surgery - that was 10 years ago. Today they would probably put me on humira or remicade right after surgery. After a surgery to remove the inflammed parts of your intestine, you are at a largely increased risk to develop inflammation in other parts of your intestine, not to mention you end up with vitamin and other deficiency and potentially small bowel syndrome (that leads to e.g. protein deficiency). If I could go back in time to 1999 after I was diagnosed (I had surgery in 2003), the first thing I would do is ask to be put on long term drugs, either azathioprine (imuran) or biologics (only remicade was around back then). I might have avoided surgery and all the problems that follow surgery.


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## Daunting (Aug 4, 2013)

Thanks Alex.

More and more I read I tend to to want to try the biologics approach. I am just really scared to get the complications from the drugs. It is rather scary. Somedays I feel as if you are damned if you do or damned if you don't.  I think I am just really scared of this disease. Wishing there was an easy way out.


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## alex_chris (Aug 5, 2013)

Daunting said:


> Thanks Alex.
> 
> More and more I read I tend to to want to try the biologics approach. I am just really scared to get the complications from the drugs. It is rather scary. Somedays I feel as if you are damned if you do or damned if you don't.  I think I am just really scared of this disease. Wishing there was an easy way out.


Don't be scared. Crohn's is manageable, the problem most people (me included) have or had is that they just don't know enough about managing Crohn's. And as a consequence they don't do what is necessary to get into long term remission. For many years after my 2003 surgery I thought I was in remission, although I had reoccuring problems and my weight wasn't anywhere near where it should be - not to mention iron deficiency problems starting in 2006 and lasting until 2012. Only in the last one and a half years did I manage my Crohn's really well - I very much hope that stays this way.


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## afidz (Aug 5, 2013)

Daunting said:


> More and more I read I tend to to want to try the biologics approach. I am just really scared to get the complications from the drugs. It is rather scary. Somedays I feel as if you are damned if you do or damned if you don't.  I think I am just really scared of this disease. Wishing there was an easy way out.


Hello Daunting, 
a few things I wanted to add to this conversation 
It is beneficial to research the drugs you are considering, highly recommended. But you can't read to far into it or you will freak yourself out. They have to report all side effects experienced, even if only one person reported it. You also have to consider the benefits of the medicine. What kind of relief it could potentially bring you, what activities you can go back to doing, and most importantly, how much damage can potentially be avoided causing further problems in the future. Personally, I was on Humira and never had a negative side effect, and went into remission. All I am trying to say I guess is that you don't know how your body responds until you try and you can't beat yourself up about the what ifs. 
As for surgery goes, like everyone has already stated, go for as long as you can with out it (you don't want to risk emergency surgery either) Because we have an autoimmune disease, our bodies can't fight infection or heal as well as the common bear. We are at a greater risk for complications that could result in further surgery and like already mentioned, short bowel syndrome that leads to vitamin and nutrient deficiencies.


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## helenbussey (Aug 5, 2013)

Going to hospital today to give decision!! I think I've decided on surgery as the doc wants to put me on Azathioprine which sounds quite toxic & I don't like the idea of having blood tests every week (to start)!! It is very confusing & you don't know what to do for the best! Good luck with your decision. Helen.


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## alex_chris (Aug 5, 2013)

helenbussey said:


> Going to hospital today to give decision!! I think I've decided on surgery as the doc wants to put me on Azathioprine which sounds quite toxic & I don't like the idea of having blood tests every week (to start)!! It is very confusing & you don't know what to do for the best! Good luck with your decision. Helen.


Helen, I would ask your doc what his plans for long term management of your Crohn's are post surgery. I am pretty sure he will tell you it's either azathioprine/6mp or remicade/humira/cimzia etc.

On aza, your blood tests are every 2 months after an initial ramp up phase. The blood tests are a good way to test for all other kinds of deficiencies - for me, I actually only check my inflammation markers, my WBC, ferritin and then take a more general look at all the rest to see if anything is out of the normal range.


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## Daunting (Aug 5, 2013)

@alex_chris

Hi what do you mean by not managing your crohns enough, what could you of done differently. Do you mean you should of been put on maintenance medications? Or do you mean food?? 

@helenbussey

Please let us know what your doctor says. I am truly interested. 



I honestly think I have done too much research of my own on all the meds, I know there are many complications out there from the medications but also there is complications from surgery and I've learned this from reading all of your posts. Thank you. 
I am still scared but now I have more information and ammunition when I approach my doctor on August 13. My doctor doesn't talk much about the future, he usually says we will see or we will talk about it when that time comes. I know he logic in that, but for me I need to know - and I think this time I will make him discuss it with me. I did discuss Imuran with my family doctor and he said he has lots of patients who take it for arthiritis and they are doing really well, he usually sends them for blood tests on a regular basis, and he said if it makes me feel better he can also send me for some inbetween the ones that my Gi will send me. To keep an eye on my levels. I know I have 2 great doctors but I am still scared.


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## alex_chris (Aug 6, 2013)

With managing Crohn's I mean a multitude of things:

a. knowing what to eat, what not to eat, when to eat, how much to eat, eating slow or not etc.

b. maintenance drugs (for me that is aza and helps to keep me in remission)

c. endurance sport (a big part of how I manage my Crohn, whenever I stopped for months, I got into problems)

d. getting rid of vitamin (B6, B12, D etc.), iron, magnesium, zinc etc. deficiencies either through iron injections (which I had to have for some time) and/or supplements, but also by eating more conscious (I am not lactose inolerant, so I can tolerate milk; also, an apple a day really keeps the doctor away as strange as that sounds for a Crohn's patient)

e. stress relief and generally being a calmer person - this is probably one of the main reasons I am now better off than many years ago. I can still work through the night and do 100 hour work weeks if necessary, but I don't stress out about work or my personal life + I do men's yoga 

Those are my 5 main prongs of Crohn's management. Surgery isn't one of them and I hope I never have to get surgery again - it took me a long time to recover from surgery (over half a year until being in somewhat normal shape again) and many years of having problems with weight loss and deficiencies thereafter. Not to mention a long scar across my belly.


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## Daunting (Aug 6, 2013)

Thank you for your thoughts 

What do you mean by what not to eat or when to eat it, I have been told my Gi that what you eat doesn't really matter unless you find something that is your trigger or it hurts you to eat it 

But I have read that Sugar can be bad for you, haven't found out which sugars though, still trying to understand that one.

As for AZA- do you think it really would of helped, I am looking at going on to that really soon and I am terrified

How much did they remove during your operAtion


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## helenbussey (Aug 6, 2013)

Better news guys, I went to see Specialist yesterday and he thinks I can have keyhole surgery to remove damaged part of small intestines so no large scar!!! Also, he said I should be able to continue on Pentasa after surgery, which suits me! As for diet, I've been told to avoid any food that does not digest easily i.e: peel anything with a skin (Fruit, peppers, tomatoes, etc..) nuts & crisps as these can build up and cause blockages plus anything spicy! Hope this helps. Helen.


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## Daunting (Aug 6, 2013)

@Helenbussy

Do you know how much of your intestines he will be removing?? And as for the foods to avoid, is it because you have a stricture??


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## helenbussey (Aug 6, 2013)

Yes I have a stricture so things can get blocked up!! They want to remove about 4 inches which doesn't seem too bad?!!


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## Daunting (Aug 6, 2013)

How do you know when you have a stricture. 

I wish you the very best - and hope that all goes really really well for you .


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## helenbussey (Aug 6, 2013)

I had to swallow a capsule camera and the photos confirmed my Crohns!

Good luck to you too


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## alex_chris (Aug 6, 2013)

helenbussey said:


> Better news guys, I went to see Specialist yesterday and he thinks I can have keyhole surgery to remove damaged part of small intestines so no large scar!!! Also, he said I should be able to continue on Pentasa after surgery, which suits me! As for diet, I've been told to avoid any food that does not digest easily i.e: peel anything with a skin (Fruit, peppers, tomatoes, etc..) nuts & crisps as these can build up and cause blockages plus anything spicy! Hope this helps. Helen.


Helen, I know I have said it above and if it is your preferred course of action it is your choice, but I still suggest that you read a bit on Pentasa and Crohn's on this forum and maybe also some studies on the effectiveness of Pentasa. Pentasa is a drug that works superficially and is thus suitable for UC, but not for Crohn's, especially Crohn's that is concentrated in the small intestine. If you are required to remove a stricture and have been on Pentasa recently, without effective long-term medication there is a high chance of new inflammation and as a consequence strictures. 

It is good that they just want to do a keyhole surgery and just want to remove a few inches, I would still, however, be prepared that it can take a long time to recover from surgery. I was advised initially that they would do a keyhole surgery and remove approximately 20cm of smaller intestine (8 inches), they started with the keyhole approach, but had to go through the belly and eventually removed about 60cm (24 inches).

I wish you all the best.


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## alex_chris (Aug 6, 2013)

Daunting said:


> Thank you for your thoughts
> 
> What do you mean by what not to eat or when to eat it, I have been told my Gi that what you eat doesn't really matter unless you find something that is your trigger or it hurts you to eat it


For most/all Crohn's patients what you eat and how you eat, is important. I can't eat anything which is too oily, too greasy, too sweet, too burned, etc. - then the foods to avoid are onions, beef in steak form, popcorn, etc. (there are many threads on here that talk about which foods are in general things people normally can eat and things they cannot eat). Additionally, eating smaller portions in more than 3 sittings per day is beneficial. Very often, a combination of foods is also beneficially, I could - for instance - get into trouble with meat with fries, but not meat with rice or polenta, while I can eat fries (but shouldn't) by themselves. Adding a cucumber salad also helps. However, all of this is very specific to individuals.



> But I have read that Sugar can be bad for you, haven't found out which sugars though, still trying to understand that one.


I have no problem with sugar. I have problem with very sweet foods. For instance, even a bite of a brownie could (at least in the past) get me into trouble.



> As for AZA- do you think it really would of helped, I am looking at going on to that really soon and I am terrified
> 
> How much did they remove during your operAtion


I am not terrified about aza. The three main side effects people should care about are a. a higher risk of certain cancers (however, to the tune of 4 in 10,000 people compared to 2 in 10,000 people in the general population), b. a higher risk of infection (this only applies if you are taking a dose of aza that is too high, I am taking an effective dose of approximatly 2.1mg per kg bodyweight right now and my WBC is approximately 5 - I haven't had a cold or virus infection in about 2 years) and c. problems with your liver, which is why you do regular blood test and should consult a doctor if you notice yellow fingernails. 10-20% of the people who start with aza also do not tolerate aza at all and have to stop taking aza immediately. 

Aza does not help that much to get you into remission, but it helps with staying in remission.

As stated above, I had 60 cm (24 inches) of small intestine removed in 2003.


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## 2thFairy (Aug 6, 2013)

alex_chris said:


> I am not terrified about aza. The three main side effects people should care about are a. a higher risk of certain cancers (however, to the tune of 4 in 10,000 people compared to 2 in 10,000 people in the general population), b. a higher risk of infection (this only applies if you are taking a dose of aza that is too high, I am taking an effective dose of approximatly 2.1mg per kg bodyweight right now and my WBC is approximately 5 - I haven't had a cold or virus infection in about 2 years) and c. problems with your liver, which is why you do regular blood test and should consult a doctor if you notice yellow fingernails. 10-20% of the people who start with aza also do not tolerate aza at all and have to stop taking aza immediately.


Pancreatitis is in the top negatives with azathioprine as well.  Several people here have had to stop aza due to pancreatitis.


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## alex_chris (Aug 6, 2013)

2thFairy said:


> Pancreatitis is in the top negatives with azathioprine as well.  Several people here have had to stop aza due to pancreatitis.


You are right, sorry, forgot about that.


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## Daunting (Aug 6, 2013)

Those are all of the side effects that I am scared of I know there is a good chance that I will not even get them, but knowing they are there, really worries me. And I do understand that not all people can take AZA others need to go on the 6MP which is a derivative of AZA. But still those are scary side effects. And what if I cannot go on AZA or 6mp my next stop will be humira or remicade more side effects there to contend with.

I think these were my reasonings for wanting to go through surgery, However I do understand now from reading many peoples post that Surgery sometimes is not the easy way out as the disease can and will come back over time or the disease could progress more rapidly after surgery or what not. 
As for food, To be honest I have not found anything to be elimated from my diet as of yet except for raw onion, garlic, icecream and really spicy foods, I tend to keep an eye on what I eat and notice right away if it bothers me or not. My doctor said because at the present time I do not have alot of immedate damage that maybe why I can eat more of everything without it bothering me, but I am trying to look for the future, I do not want my decisions now to negatively impact my future, as I am hoping i still have a good 50 years or so ahead of me (wishful thinking) My weight on entocort seems to be stable at 161-163, not happy about that - a little too high but nothing i can do about it as of yet. 

Thanks everyone


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## alex_chris (Aug 6, 2013)

Daunting said:


> Those are all of the side effects that I am scared of I know there is a good chance that I will not even get them, but knowing they are there, really worries me. And I do understand that not all people can take AZA others need to go on the 6MP which is a derivative of AZA. But still those are scary side effects. And what if I cannot go on AZA or 6mp my next stop will be humira or remicade more side effects there to contend with.


Just one more thing on aza / 6mp and biologics. Those drugs personally don't scare me, what really scares me is prednisolone and entocort. Honestly, long-term use of corticosteroids is dangerous. 

I think the regular blood tests you do with aza / 6mp even are beneficial to your health as a lot of deficiencies and other problems can be detected much earlier than if you just do half year or even only yearly bood tests (some people don't do none at all...).


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## Crohn's gal since 1989 (Aug 6, 2013)

Strictures can be seen in ultrasound.  They confirmed mine that way.


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## Daunting (Aug 6, 2013)

Funny thing as of tonight I am thinking more and more that AZA may not be to bad if it helps as I am having such a bad stabbing pain on right side for the past few days. feeling bloated and somewhat constipated.  think I may go a liquid diet for a few days.  frustrated that the entocort isnt holding it at bay


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## Crohn's gal since 1989 (Aug 6, 2013)

Aside from the sun sensitivity and easier bruising, I'm not feeling any negative reactions and only positives on Azathioprine.


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## Daunting (Aug 7, 2013)

Thank you I hope I will have only positive results as well.  

I am just scared that I will be hypersensitive to it as I am with all other medications 

How long have you been on it and what dose??


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## Crohn's gal since 1989 (Aug 7, 2013)

Daunting said:


> Thank you I hope I will have only positive results as well.
> 
> I am just scared that I will be hypersensitive to it as I am with all other medications
> 
> How long have you been on it and what dose??


I'm on my third round if Azathioprine.  I was in full remission twice and off all meds.  Currently I am taking 150mg Azathioprine.  And I have been taking this for 3 months now.  2 more weeks left of Prednisone!


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