Elective resection

[housemouse]

My GI doctor and surgeon are recommending an election resection operation to remove the stricture area of my small intestine (ileum area).
I was hospitalized in March for a partial small bowel obstruction, which led them to believe I had a stricture. My inflammation markers are low, and I've been on Remicade since September 2012. I had a MRE a few weeks ago, and that was used to confirm the stricture.

The suggest this operation be done elective to avoid situations in which I may need it in an emergency situation. However, I really don't know how to make this decision. I am trying to gather as much information as I can and I already gathered a lot of good questions from this sub forum.

The surgeon told me that they would have to remove a bit of the ileum area, the illeocecal valve, the appendix, and a small portion of the colon. I've been told that removing the valve can cause permanent D.

I just need some guidance, or advice. Anyone else choose a resection surgery electively? or has anyone had the illeocecal valve removed?

 

[Scaryman]

I have to have that ileocecal right in transverse resection later this month. That might change based on the University of Chicago's opinion. I have been warned that yes permanent diarrhea, permanent B12 shots, bile green poop. Surgery should be her last resort I had asked for colonoscopy to confirm. But that's me. Always get a second opinion as surgery should be a last resort. What triggers my surgery is a couldn't get a pediatric colon scope into my terminal ileum.

 

[housemouse]

I have to have that ileocecal right in transverse resection later this month. That might change based on the University of Chicago's opinion. I have been warned that yes permanent diarrhea, permanent B12 shots, bile green poop. Surgery should be her last resort I had asked for colonoscopy to confirm. But that's me. Always get a second opinion as surgery should be a last resort. What triggers my surgery is a couldn't get a pediatric colon scope into my terminal ileum.

What opinion are you referring to? and what do you mean by b12 shots?

I had a colonoscopy and an upper endoscopy in september 2012. Because of my severe inflammation they were unable to look into my terminal ileum. I don't know if they could do it now that I'm not imflammed, but if it is strictured, maybe they couldn't get in there anyway

 

[Scaryman]

Well if they ha e a picture of the terminal ileum they would be able to see the stricture or did they make it that far? Mine was visible via pediatric scope.

 

[Pipe]

I had a colonoscopy done a week ago, made it through my large bowel but could not penetrate into my small.... I have way to much scar tissue and inflamation on the go... its apparently a mess in there and they want to operate before I end up going through the Emergency room... weird thing is I actually feel pretty good, minimal pain...mainly a bit of discomfort after I eat, but that has been something I have lived with for the past 20years. I am wondering... if no pain should they be operating? I am relying on my doctors to do what is best for me... am I wrong in thinking so?

 

[housemouse]

I had a colonoscopy done a week ago, made it through my large bowel but could not penetrate into my small.... I have way to much scar tissue and inflamation on the go... its apparently a mess in there and they want to operate before I end up going through the Emergency room... weird thing is I actually feel pretty good, minimal pain...mainly a bit of discomfort after I eat, but that has been something I have lived with for the past 20years. I am wondering... if no pain should they be operating? I am relying on my doctors to do what is best for me... am I wrong in thinking so?

I feel like I am in the same situation. I've been through the ER twice because of partial obstructions, and I think my doctors want to avoid any other partial or full obstructions. I'm sure you're doctors want to avoid the same. I am also, not currently, in any pain or rarely any discomfort. But I have not sure how necessary this surgery is for my future health. I need more info. maybe you do too. talk to your doctors about how necessary they thing surgery is for you.

 

[Scaryman]

Have any of you guys with partial obstructions had a colonoscopy with a pediatric scope? Did not get into strictures area? How long is the stricture?

 

[housemouse]

I've had two parital small bowel obstructions (sept 2012, march 2013). My colonoscopy in sept 2012 showed pretty bad inflammation but was unable to enter the ileum due to servere discomfort during the procedure. That is the area they believe my stricture is now. Based on my MRE scan I have a 5-6cm long stricture in the ileum. I haven't had a second colonoscopy since. they believe the 2nd obstruction was caused by stricture.

 

[Scaryman]

I'd see about getting another scope. In almost a year since my last colonoscopy things changed dramatically. Even on MTX and humira. My local dr couldn't believe the results as I looked great clinically to him. When he got my colonoscopy results he was surprised.

 

[housemouse]

I will definitely look into that. thanks.

 

[Pipe]

I could not have a full colonoscopy due to my stricture ... could not get past and it is approx 10cm long. Hope that helps.

 

[Jennifer]

Here's information on the importance of surgery when scar tissue is involved: http://www.crohnsforum.com/showthread.php?t=50494

Here's an older thread on ileocecal valve removal: http://www.crohnsforum.com/showthread.php?t=27607

Here's info on ileocecal valve reconstruction: http://www.crohnsforum.com/showthread.php?t=50495

Here's information on what obstructions are like: http://www.crohnsforum.com/showthread.php?t=29625

All that being said, I did not wait until I had an emergency situation on my hands when I had my resection. I had few symptoms at the time, just had too much scar tissue and did deal with partial blockages off and on (over the course of a year or so). I would not base such an important surgery off of symptoms alone. Blockages can be life threatening so that's why doctors do a resection before things get that bad. I had 8 inches of my terminal ileum and cecum removed (along with appendix).

Talk to your doctor about possible ways to help form your stool if you do in fact have the ileocecal valve removed. Since the scope was able to pass through and see into the cecum and see that the TI was too narrow I'd ask if removal of the ileocecal valve is necessary and ask if its possible to keep it (if not ask why). If you do in fact have active disease there or a lot of scaring then you may likely have to have it removed in the future so keep that in mind.

 

[Pipe]

Hey thanks for that Jennifer... that helped alot! I feel better about going for my surgery tomorrow.

 

[carlysy]

Some good tests to have done are an MRI or a CT scan with contrast, if you haven't already, so the doctor has a better idea of how long the strictured area is and it also gives an indication on how damaged that segment is.

I had the surgery electively (sort of electively) 2 months ago, the exact surgery you are referring to. I had been having partial blockages for years and it got to a point where my doctor was confident that there was lots of scar tissue (not just inflammation) and I was basically going to be a ticking time bomb so I chose to get the surgery done so it didn't become an emergency situation (which they say would have happened eventually). Like you my inflammatory markers from blood tests were low while having the blockage, leading them to believe there was a build up of scar tissue. (They were right!)

I would get as many tests and discuss with your doctor whether they suspect it is scaring or inflammation and whether they can perform any other procedures to help (I've been told if the area is around 3-4cm or smaller they can put a balloon type thing through and expand the area, sorry I don't know exactly what this is called).

I'm 2 months post-op and am having some issues with D as you mentioned you were concerned about. This isn't permanent in all people however and mine has slightly improved in the last few weeks. I've read from people on this forum about having to go to the toilet 10 or more times a day but that does not happen to everyone. I only go once or twice, my major concern with it is that it is urgent so I'm worried about getting stuck somewhere without a toilet near by. Your body takes time to re-adjust and relearn to absorb the bile salts so I have faith in my body that it will heal itself and if not I will be put on tablets that help do this (no big deal considering I've been taking Crohns medication for the last 10 years anyway).

I won't lie to you the surgery isn't pleasant and the recovery process is long. I would make sure this is a last resort but also remember that it is always better to have it done electively than have an emergency on your hands.

All the best, wishing you well!

 

[DustyKat]

Hi housemouse,

Both of my children have had ileocaecal resections, one as an emergency and the other planned and it goes without saying that planned surgery is definitely the way to go.

Your low inflammatory markers coupled with the MRE results certainly do seem to support the diagnosis of a stricture due to scarring. With that in mind you might like to look at this article:

• Patients with obstructive symptoms due to a fibrotic terminal ileum are best treated surgically.

http://www.crohnsforum.com/showthread.php?t=40792

You have already been given wonderful advice so the only thing I can add to speak to the surgeon about whether a strictureplasty is a viable alternative to a resection.

Oh, both of my children have issues with bile salt malabsorption diarrhoea. My daughter, resection 7 years ago, has had quite a bit of natural take up over that time but also uses psyllium husks to alleviate the problem. They work the same way as the medication does. My son also uses psyllium.

Good luck! I well know these decisions are never easy. :ghug:

Dusty. xxx

 

[housemouse]

wow thank you everyone. this is all very good information. thank you so much. I have a lot to consider now. But some people say that surgery is the last option, as it should be. but, that elective surgery is better (obliviously) than an emergent situation. However, how am I supposed to know when to draw the line? How long do I try to manage the stricture and avoid/live with obstruction risk before i finally take the plunge? some of you said you had obstructions many times over the course of a year before you opted to have surgery, or should I have it now before I have a 3rd obstruction?

I know you can't make this decision for me. thanks for the guidance

 

[Scaryman]

wow thank you everyone. this is all very good information. thank you so much. I have a lot to consider now. But some people say that surgery is the last option, as it should be. but, that elective surgery is better (obliviously) than an emergent situation. However, how am I supposed to know when to draw the line? How long do I try to manage the stricture and avoid/live with obstruction risk before i finally take the plunge? some of you said you had obstructions many times over the course of a year before you opted to have surgery, or should I have it now before I have a 3rd obstruction?

I know you can't make this decision for me. thanks for the guidance

What helped me with my decision is the pain I'm dealing with And the fact that they could not intubate the stricture means something the size of a thick plastic straw can't fit through. (You may recall the thick or wider straws some ice cream shops have them.) those reasons alone gives me the chance of possible strictureplasty than resection. Like you said " on your terms, not in a emergent situation."

 

[Jennifer]

wow thank you everyone. this is all very good information. thank you so much. I have a lot to consider now. But some people say that surgery is the last option, as it should be. but, that elective surgery is better (obliviously) than an emergent situation. However, how am I supposed to know when to draw the line? How long do I try to manage the stricture and avoid/live with obstruction risk before i finally take the plunge? some of you said you had obstructions many times over the course of a year before you opted to have surgery, or should I have it now before I have a 3rd obstruction?

I know you can't make this decision for me. thanks for the guidance

I had two partial obstructions before my resection. I had both scar tissue and inflammation going on and my GI was trying to get the inflammation under control first to see if that would help. More recent research (that I provided above) shows that getting the inflammation under control is not the right course of action when there's also a lot of scar tissue. So really it would have been best for me to have the resection rather than try to get the inflammation under control first. For me in the future, I will draw the line when I start having symptoms of a partial obstruction again. In the meantime I'm continuing on medication to avoid having another resection from scar tissue caused by chronic inflammation.

In your case you clearly are dealing with scar tissue and have already dealt with some obstructions (I'm not sure if yours were full ones or partial ones). You will continue to have this issue until that area is removed. Scar tissue will become more narrow over time so its important to keep that in mind.

Yes its possible to have a balloon dilation or a strictureplasty if it fits the criteria but its also important to know that these "fixes" are not permanent and you will have issues again in the future.

I still suggest talking to your GI about the possibility of keeping the ileocecal valve and/or why they want to remove that section as well. Is the scar tissue really that far? I'm not saying that I wouldn't go through with it if it were needed but I like to be informed as much as possible before making a decision.

Edit: Your MRE showed 6cm in the ileum that has scaring, there's no mention of the cecum or ileocecal valve. So why do they want to remove that section? What other tests showed scar tissue in those sections? Have more testing done before you have surgery so you can have a better idea of what needs to be removed.

 

[DustyKat]

When it comes to scar tissue surgery is not a last option. You need to look at a stricture, caused by scarring, as being what it is...a complication of Crohn's and a complication that has no treatment aside from surgical intervention.

Since both the GI and the surgeon are validating each other views then I personally would lean toward having the surgery but again it is your choice to make and if you have time on your side then you may be able to source second opinions if doubt remains.

Dusty. xxx

 

[DustyKat]

Re: the ileocaecal surgery.

If the scarring is in the terminal ileum and close to the ileocaecal valve then the surgeon will have no choice but to remove the valve and the caecum.

If you have a 6cm stricture they will have to ensure that the margins are both free of disease and therefore the tissue is viable to work with, so usually about 2cm either side of the stricture. Therefore 6cm may become 10cm.

The other issue with disease in the terminal ileum is the size difference between the small and the large bowel. You cannot join the small bowel to the caecum as it is a large pouch so the surgeon needs to move to the start of the large bowel as a point to reconnect. This means you will have about 8/9cm of large bowel removed as well, the bulk of which is the caecum.

 

[housemouse]

I had two partial obstructions before my resection. I had both scar tissue and inflammation going on and my GI was trying to get the inflammation under control first to see if that would help. More recent research (that I provided above) shows that getting the inflammation under control is not the right course of action when there's also a lot of scar tissue. So really it would have been best for me to have the resection rather than try to get the inflammation under control first. For me in the future, I will draw the line when I start having symptoms of a partial obstruction again. In the meantime I'm continuing on medication to avoid having another resection from scar tissue caused by chronic inflammation.

In your case you clearly are dealing with scar tissue and have already dealt with some obstructions (I'm not sure if yours were full ones or partial ones). You will continue to have this issue until that area is removed. Scar tissue will become more narrow over time so its important to keep that in mind.

Yes its possible to have a balloon dilation or a strictureplasty if it fits the criteria but its also important to know that these "fixes" are not permanent and you will have issues again in the future.

I still suggest talking to your GI about the possibility of keeping the ileocecal valve and/or why they want to remove that section as well. Is the scar tissue really that far? I'm not saying that I wouldn't go through with it if it were needed but I like to be informed as much as possible before making a decision.

Edit: Your MRE showed 6cm in the ileum that has scaring, there's no mention of the cecum or ileocecal valve. So why do they want to remove that section? What other tests showed scar tissue in those sections? Have more testing done before you have surgery so you can have a better idea of what needs to be removed.

Both of my obstructions were partial. and wow, I didn't now that the area can continue to narrow. that is good to know.

I am not very educated on strictureplastys but I have asked my surgeon why they have decided against that option for me. Basically she had told me earlier that trying to repair scar tissue doesn't really work and it'd just best to have it removed.

I've talked with my surgeon a little about why the valve needs to be removed. She said that she really wont know if it has to come out or not until she can physically see it. But based on my MRE the strictured area is right there near the valve, and as DustyKat said above:

If the scarring is in the terminal ileum and close to the ileocaecal valve then the surgeon will have no choice but to remove the valve and the caecum

If you have a 6cm stricture they will have to ensure that the margins are both free of disease and therefore the tissue is viable to work with, so usually about 2cm either side of the stricture. Therefore 6cm may become 10cm.

The other issue with disease in the terminal ileum is the size difference between the small and the large bowel. You cannot join the small bowel to the caecum as it is a large pouch so the surgeon needs to move to the start of the large bowel as a point to reconnect. This means you will have about 8/9cm of large bowel removed as well, the bulk of which is the caecum.

that was a really good way to put it, Kat, thank you for that information.

 

[carlysy]

Housemate you ask where to draw the line - it is a hard question! I had many years of partial blockages and hospital admissions (probably 10-15 at least). These occurred a few times a year since I was 16 and because I was young and petrified of surgery I kept refusing to do it. I drew the line this year (at 21 years old) because my diet had become so restricted, I was SO sick of going through these painful and scary obstruction episodes and every one I had brought me closer to an emergency (I was very lucky not to have had an emergency situation happen considering how many blockages I had). If it is scar tissue you have to come to terms with the fact that it can not be healed and will have to come out at some stage. At least if it is elective you can mentally prepare as well as prepare other areas of your life (schedule time off work, make sure you have people to care for you for at least the first few weeks, etc).

Hope hearing everyone else's experiences makes the decision a little easier. Us Crohnnies are tough, we can get through anything and it will make us stronger!

 

[superzeeman]

I had the illeocecal valve removed and yea, I have permanent D. If I have a solid movement, I think its strange and I don't feel "normal". Ask for cholestramine to avoid the bile poop. It burns like hell and will make you so sore in the bum.

 

[Traumanurse]

What an informative thread! It's the same thing I have right now.

I had an obstruction in November after 10 years off of all meds. It resolved, but the Doc wanted to do testing afterward. Had the colonoscopy that showed a stricture right at the terminal ileum same as several of you here. Couldn't get the pediatric scope through to see the rest. I had 18 inches removed in 2001 same place, so I was hoping for a small amount of scar tissue. Then did the small bowel follow through and found lots more problems above the stricture. The Doc thinks it's scar tissue AND active Crohns.

I had the choice, start on Humira and see how much bowel I can save, or have two feet more removed. After a lot of research, I am starting on Humira this weekend. I know the surgery is inevitable, but want to save as much bowel as I can. Already have daily D many times a day, and a very restricted diet.

If they are sure it's all scar tissue, then surgery is the right course of action many times. If it's active disease, we can try other things. I felt really great after I recovered from my first surgery. Yes I had daily D, but I could deal with that and the other stuff that went with it. 10 pretty darn good years. I shouldn't feel sorry for myself after reading some of the stories on here. How brave some of you are! It REALLY helps having others to talk to that understand!

 

[Scaryman]

I had two partial obstructions before my resection. I had both scar tissue and inflammation going on and my GI was trying to get the inflammation under control first to see if that would help. More recent research (that I provided above) shows that getting the inflammation under control is not the right course of action when there's also a lot of scar tissue. So really it would have been best for me to have the resection rather than try to get the inflammation under control first. For me in the future, I will draw the line when I start having symptoms of a partial obstruction again. In the meantime I'm continuing on medication to avoid having another resection from scar tissue caused by chronic inflammation.

In your case you clearly are dealing with scar tissue and have already dealt with some obstructions (I'm not sure if yours were full ones or partial ones). You will continue to have this issue until that area is removed. Scar tissue will become more narrow over time so its important to keep that in mind.

Yes its possible to have a balloon dilation or a strictureplasty if it fits the criteria but its also important to know that these "fixes" are not permanent and you will have issues again in the future.

I still suggest talking to your GI about the possibility of keeping the ileocecal valve and/or why they want to remove that section as well. Is the scar tissue really that far? I'm not saying that I wouldn't go through with it if it were needed but I like to be informed as much as possible before making a decision.

Edit: Your MRE showed 6cm in the ileum that has scaring, there's no mention of the cecum or ileocecal valve. So why do they want to remove that section? What other tests showed scar tissue in those sections? Have more testing done before you have surgery so you can have a better idea of what needs to be removed.

Jennifer just wondering if it is worthwhile asking my surgeon ( well known surgeon with a awesome reputation at the U of C. For bowel sparing techniques.) my local GI says he thinks I will need a ileocecal, terminal ileum, right and transversal colon resection. Although he did say that he defers that decision to the university of Chicago's experts. Here is the lowdown based on my last colonoscopy 1 month ago. Cecum is deformed and shows inactive colitis. I know I'm going to loose that and my terminal ileum due to a very bad stricture a pediatric scope couldn't intubate. I'm going to ask about strictureplasty regarding the transversal colon 5cm long stricture. Just wondering how much they can save with my ICV via reconstruction or dilation if possible. Hope you can at least guess. I am going to meet with the chief section in the university of Chicago Gastroenterology dept. next week, I may be able to ask him.

 

[Jennifer]

Jennifer just wondering if it is worthwhile asking my surgeon ( well known surgeon with a awesome reputation at the U of C. For bowel sparing techniques.) my local GI says he thinks I will need a ileocecal, terminal ileum, right and transversal colon resection. Although he did say that he defers that decision to the university of Chicago's experts. Here is the lowdown based on my last colonoscopy 1 month ago. Cecum is deformed and shows inactive colitis. I know I'm going to loose that and my terminal ileum due to a very bad stricture a pediatric scope couldn't intubate. I'm going to ask about strictureplasty regarding the transversal colon 5cm long stricture. Just wondering how much they can save with my ICV via reconstruction or dilation if possible. Hope you can at least guess. I am going to meet with the chief section in the university of Chicago Gastroenterology dept. next week, I may be able to ask him.

I posted this above in my first response but you might have missed it. In regards to reconstruction of the IC valve:

"The IC valve or ileocolic valve is the structure that marks the transition from the small bowel (ileum) into the large bowel or colon. In most people it does not serve as a true valve. In other words, if one gets a barium enema X-ray in a normal healthy person, with dye going backwards from the anus, through the colon, it will commonly go back into the small bowel, through the IC valve reflecting this baseline ‘incompetence’. In a patient with Crohn’s disease, the inflammation and scarring almost uniformly destroys any valvular function it may have had. It is not accepted practice to try to reconstruct a valve when doing an operation that removes this area of the bowel (called an “ileocolectomy”) for many reasons. The most important is that it appears to have no function and though we create such valves in other circumstances, they are notoriously ineffective(they commonly leak in both directions and require multiple operations to fix) and in fact are done so as to DISALLOW the passage of food stuffs downstream(such as would be done in what is called a “continent ileostomy”). Most Crohn’s patients are having an ileocolectomy because of this problem already, in other words they have a stricture that disallows the passage of foodstuffs downstream and they have bowel obstruction symptoms. So recreating a ‘valve’ that once again compromises the passage of food stuffs is self-defeating. In fact there is some data that suggests certain medicines, like mesalamine work BETTER after an ileocolectomy with removal of the IC valve." http://www.crohnsforum.com/showthread.php?t=50495

I retract my earlier statement about a Strictureplasty not being permanent (that's dilation that isn't permanent, you will have issues again) but its important to know that it is still possible for the stricture to return at the same location.

"The procedure is generally safe and effective and in one study of 225 strictureplasties, only one restrictured at the same location. Another study found that 28% of patients had another stricture (in a different location) within five years and only 3% at the same specific site as the previous strictureplasty." http://www.crohnsforum.com/wiki/Strictureplasty

All options are worth discussing with your GI and surgeon before going through with surgery so you have a better understanding of why certain things are needed and have some peace of mind. Its not that they aren't aware of dilation or a strictureplasty but its clear that they haven't discussed with you why they plan on doing a resection instead. So yes please do speak with them.

 

[Jennifer]

The other issue with disease in the terminal ileum is the size difference between the small and the large bowel. You cannot join the small bowel to the caecum as it is a large pouch so the surgeon needs to move to the start of the large bowel as a point to reconnect. This means you will have about 8/9cm of large bowel removed as well, the bulk of which is the caecum.

Actually Dusty my small bowel was reconnected with what was left of my cecum. A portion of my cecum was removed along with the TI. I can see it in my colonoscopy images. It was done 14 years ago though, wonder if maybe they don't do that anymore. I'd have to look it up.

 

[Scaryman]

wow this is some stuff to chew on. I'm going to loose my cecum as stated earlier. So i guess it depends if they feel strictureplasty is worth it saving what I can of my colon. Now I'm concerned and kind of worried. Thanks Jennifer. I'll let y'all know what they say at the U of C.

The thought of loosing 1/2 of my Colon.....scary stuff, I know there are people here with no colon but still a life altering choice.