What is ileocecal resection & why did the doctors not explain this to me???

[YJ120]

Oh my, I've just realised what an ileocecal resection is! Am I right in saying that is the removal of some of your terminal ileum, your ileocecal valve and your cecum? My discharge paperwork and my doctors note for work states I had an ileocecal resection (on 11th Dec).

I typed it in a post the other day and then when I thought about it again I've googled it and found the above info. When discussing with the surgeon prior to surgery it was just explained they would take the 7cm stricture I had out and see what else was going on in there. After the op and in the nearly 5 days I was in hospital no one explained what they had removed they just said they removed my stricture and about 8 inches that looked 'crohnsy' (they were actually the surgeons words!). So I thought they'd just taken some of my terminal ileum out!! But with my paperwork stating that have they took more??

I'm a little miffed, now that I've realised what I've had removed, that it hadn't been explained to me and also am now wondering about what this means for me, as I've read that is the only area vitamin B12 is absorbed?

Do I ring my GP or do I ring the hospital to discuss this? Surely I should of been told exactly what was removed? The NHS is good and the staff are great, but it's so understaffed that so many things are missed because they are running round like headless chickens!

Thanks in advance, Yvette x

 

[If*]

Hello Yvette, sounds like you are healing very well. Go you!
The B12 you mention (I am no expert or Dr.) however is something that should be checked if one has Crohn's in the ileum. Even without having it re-sectioned. The surface would need to be healthy and have the ability to absorb. Injections would be required for the rest of ones lifetime if a lesser amount of ileum is present and B12 is low ~ yes it is important. So yes, ask to have your levels checked and rechecked in a few months and so on. Be your own advocate. Your GP would be the one to ask.
Sorry you have lost some of the parts you mention. (Mine are long gone too) It can be difficult to see what the extent of the damage is sometimes until the surgeon gets in there. Most often the worst of the worst is removed and they do not remove all active Crohn's due to doing a sparing/bowel preserving resection.
I wish you the best, a long remission and a sense of well being.
Much peace to you.

 

[Naturelover]

Goodness gracious! What kid of doc would not tell their patient what they removed from them? Is it possible that the doc said something to you while you were still feeling the effects of anestheia or pain meds? Was it even mentioned to whoever was with you at the hospital? That's a huge error and should be reported to the hospital as high up the chain you can possibly go.

 

[DustyKat]

The surgeon should have explained to you what exactly your surgery would involve and ideally they should have drawn you a picture.

The problem with having issues with strictures/fistulas in the terminal ileum and the need to have them surgically removed is the anatomy of the area involved.



The terminal ileum is where the small bowel is connected to large bowel via the ileocaecal valve and caecum. To surgically remove the diseased portion of terminal ileum and successfully anastomose (join) the disease free small bowel to another area of disease free bowel the surgeon has no choice but to remove the ileocaecal valve and caecum. Anatomically the size difference between the small bowel and ileocaecal valve is too small and the caecum too large as it is pouch like in structure. Hence the only way to achieve a successful anastomosis it is to move onto the large bowel.

The terminal ileum is the only area in the bowel that B12 is absorbed. The body does store B12 for up to 5 years so ideally you should have your B12 checked now and continue to monitor it at least 6 monthly. Personally I would also check levels of Folate, Iron Stores, Vit D, Magnesium and Zinc and also monitor these at least 6 monthly whether there is a need to supplement or not.

I would be contacting the surgeon. You haven’t long had surgery is that right? If so you should be soon coming up for your post op follow up with the surgeon as these are normally scheduled at 6-8 weeks post op. It is at this consult the surgeon usually goes through the operation in more depth with you and they will also have all the pathology results as well.

Dusty. xxx

 

[YJ120]

Hi all, thanks very much for your feedback.

If* - I'll definitely be asking my GP about the B12. My GP is brilliant so I'm sure there'll be no issues.

NatureLover - no seriously no one at any point told me or my mum or husband who were there with me after the op. I had the op on the weds n didn't see the surgeon until the Friday AM and his words were 'they've removed the stricture and about 8 inches that looked crohnsy'. That's it! So as I was from my meeting with the surgeon a few weeks before, I've just assumed they'd taken some of my TI and that was it. At no time had anyone mentioned taking my ileocecal valve and ceacum. I'm not complaining that it's been taken because I just want to feel well, I'm just shocked that no one told me and I've only found out from realising myself. Not good practice at all from the Docs, is it?

DustyKat - thanks for yet another informative response no drawing or full explanation, I just understood that they were removing the stricture and they would have a look during surgery to see if anything else needs removing. I was fine with all that, just shocked no one has told me afterwards what has been taken away.

Thanks for the diagram and explanation that's fantastic. Does this mean my appendix has been removed too, as it's attached to the ceacum?

I will ask to be checked for all those things. Yes my op was recently on 11th Dec and my follow up with surgeon is on 11th Feb, so like you say hopefully they will go through everything in depth with me then .

Thanks all, think I was just so shocked no one has actually explained what they had taken from me!

Yvette x

 

[DustyKat]

Yes, your appendix is removed too. It will also be examined in pathology along with all other sections of bowel removed during surgery.

Good luck with the follow up consult and they certainly should explain what was done in depth and go through the pathology results with you. However that does not negate that you should have been told pre op exactly what the surgery should entail and why. Post op, in hospital, they usually discuss what they saw and how much bowel was removed. Well that has been our experience.

Dusty. xxx

 

[YJ120]

Thanks DustyKat. Wow my appendix too and no mention of that either! Shocking practice for that part. But it really is because of cost cutting and the staff being expected to do so much. It doesn't make it right though.

Thanks I will be making sure I get full information at my follow up appt and will be questioning why it was not fully explained before the op and after it.

Yvette xx

 

[UnXmas]

Lol, I'm not even sure what type of ileostomy I have. I also know that, although I had a total colectomy some years ago, my GP's file states that I had a partial colectomy (my surgeon assures me that he took it all!). The other day I was googling ileostomies and I think I figured out I have a loop ileostomy, and I'm pretty certain that it has one opening for waste and another just for mucus from the left over bowel - but no one thought to tell me any of these things, obviously.

It does seem to be a common trait in surgeons to leave their patients in the dark about the details of their surgeries. I've wondered whether they think they'll scare patients if they give them too many details. But when it involves things like your question about B12, it is a problem. I wish I could say that for something important like that, your surgeon would make sure you were aware of it, but experience has led me to never assume that such important information will get passed on to you. Personally I would go to your surgeon with your questions at the follow-up appointment. If you think of other things after the appointment, I would ring your surgeon's secretary - this isn't really the procedure for getting medical questions dealt with, but if you make it clear it's important and requires the surgeon's expertise, they should take care of it. (I once had to leave that type of question with my surgeon's secretary, and one of the doctors who had assisted with the surgery called me back).

Your GP should have copies of your hospital records with the details of your surgery, and sometimes you can ring the hospital ward that you were on and they'll still have your records there for a while.

So there are ways to get information, but you're right that it is much more difficult than it should be sometimes! Maybe just cover all bases and keep ringing everyone until you get some answers. The follow-up appointment will definitely be the most ideal time to get more information. (My follow-up appointment got forgotten about - I saw my stoma nurse the other week and mentioned to her that I was surprised I hadn't had it by now... she made some enquiries and it turned out I should have had it by now. It's now been hastily scheduled for the new year lol. )

 

[YJ120]

Hey Unxmas

Thanks for your reply I spoke to my mum about it, who is a nurse and she said she didn't think it was a big deal and thinks it's probably a personal thing whether people want to know or not. Which I sort of understand - its just I'm one of the people who would want to know and feel I should of been told. But I'll say it again, the NHS staff are so busy they rush between each patient and I'm not surprised things are missed! In fact, this might be a bit gross, but I would of like to have seen what they took out, so I could see what was making me ill for so long! lol!

I have a doctors appt towards end of Jan, to get signed back to work and have my follow up appt on 11th Feb, with my Surgeon, so I'll ask all my questions then.

Dear oh dear about your appointment being forgotten about....another example of people staff being so busy things are forgotten about?!!

Yvette xx

 

[Grumbletum]

Hi Yvette
I had one too, but I don't think that's what was exactly planned before the op. The surgeon explained they would remove a section of my bowel and part of my bladder that were connected by a fistula. It was only after the surgery that he told me they'd removed the cecum and valve cos they were badly inflamed and damaged ( and thus the appendix as it's attached to the cecum. ) Like you though, they didn't discuss implications of valve removal etc with me. I've been a member of the forum since Crohn's was first suspected so I tend to come here for all the ins and outs of treatments etc.
If you have a good relationship with your GI, I would see if you could speak to him/her. The person I've found most helpful IRL is my IBD nurse.

 

[YJ120]

Hi Grumbletum

Thanks for your reply. I knew they wouldn't know until during surgery what exactly they needed I was just shocked I wasn't told in full what had happened after.

Is there anything specific like b12 etc that you have to have because of the type of resection?

That's a good idea and I think I will ring my IBD nurse on Monday. I'd not thought of that. I have a good relationship with my Consultant but my chances of getting hold of him are slim to none lol, they're so busy.

Thanks again x

 

[Grumbletum]

:smile: No problem. I asked my GI about B12 etc when I went for my
post op check up but he said my blood test results were really good and that I wasn't showing as deficient, so he reckoned I didn't need any supplements. Given the energy I've got post op, I reckon he's right.
Only real change I've noticed is that I don't tolerate fatty foods well so have to cut down on them. No bad thing, really.

 

[YJ120]

Oh that's fantastic here's hoping I'm the same

 

[Axelfl3333]

i would doubt its cost related not telling you exactly what was done.a lot of consultants are just arragant and rude,but they probably had to do more than planned i had that joy after an orthopediac procedure,its a minor procedure you,ll be back to normal in no time,after 3 mths on crutches,physio you get the picture,anyway hope your feeling better and you have donkeys years of remission.

 

[UnXmas]

Well, I had my follow up and apparently I no longer have an appendix and I'm missing more small bowel than I thought - enough for my surgeon to warn me I might no longer absorb calories so well - I'm already pretty much at starvation level thinness. :confused2: I didn't have to ask - my surgeon volunteered the information. So now I know.

Have you had a chance to speak to anyone about the details of your surgery yet? Any more surprises surrounding missing internal organs?

 

[YJ120]

Hey unxmas,

Oh gosh, about the calories. Glad they told you all info though. In hoping my surgeon is the same at my follow up. It's not until 11th Feb though.

I haven't found anything out yet. I've left a message for my IBD nurse and am hoping they call back soon hoping there's no more surprises lol!

 

[YJ120]

So, I got through to my IBD nurse who couldn't tell me anything, so arranged a telephone consultation with my GP. I did have the ileoceacal resection so at least it's confirmed now and she said the report states my appendix was a bit inflammed so it's a good job it's come out too glad I know now and will discuss in full at my follow up on 11th Feb.

Thanks for all your help x

 

[Naturelover]

YJ120, Glad you know a few things now. Make sure you type up a list of ?'s to take to your follow appt. Make a copy for you and a copy for your doc. It helps keep the visit on track and the doc like's the notes. Makes their job easier.

 

[YJ120]

Hey NatureLover

Thanks yep I do take a list of questions, I make lists for everything lol. I've found it's the best way, like you say, to keep things on track. The follow up will be here before I know it and I'll know what happens from here x