Update and surgery questions...

[Artificial]

Hello all,

So I saw my nurse yesterday to discuss starting Infliximab and to get the ball rolling with the paperwork.

Then I get a call from her in the afternoon to say she had spoken to my Consultant and now he is thinking that surgery may be the best option instead as infliximab would just be 'delaying the inevitable'.

Eek! I'd only just got my head round the whole infusion business.

From looking at my notes with the nurse, when I got my MRI results a couple of weeks ago my doc said it 'didn't show anything they didn't already know' (I presumed he just meant inflammation, and me being stupid I didn't ask anymore questions). Turns out I have a narrowing and fistulas through my small intestine :-(. I think it said 40cm is diseased.

Any advice from anyone who has had surgery? is 40cm quite a small piece to cut out?
I know I can head to the surgery sub forum but I'm quite a worrier....

xx

 

[DustyKat]

I haven't had surgery but both of my children have. I would say that 40cm sits about middle ground as far as amount removed is concerned. Just my opinion but I would consider under 30cm, all up, as conservative. I assume it is your terminal ileum that is involved?
If so then bear in mind that you will have more than 40cm removed. They will need to have a couple of centimetres clear at the promixal end of your small bowel and then at the lower end you will have your ileocaecal valve and caecum removed, so another 8-9cms there. The reason they remove the valve and the caecum (which is a pouch) is because it isn't feasible to attach the small bowel directly to the caecum as the size difference is too great.

Post operatively you will most likely suffer with bile acid induced diarrhoea but this can be managed with either prescribed medication or something like psyllium. You will also require B12 supplementation and you will need to keep and eye on your Iron Stores, Folate and Vitamin D.

I have written down in the surgery forum, under Your Surgery Story (first stickied thread), what the kids went through in hospital.

I imagine the GI is suggesting surgery due to your fistula's. Research seems to suggest that fistula's originating in the ileum aren't very successfully healed by the biologics.

I hope that helps and I haven't freaked you out! :eek2: The kids are doing wonderfully well after their surgeries.

Dusty. xxx

 

[Angrybird]

Hi Rachel, sorry to hear you will be joining the surgery club although if all goes well you will be feeling soo much better once you start to recover. One thing I have never thought to ask or been told was how much they actually cut of me...will have to ask about this as now I am curious. Are you now waiting to get an appt for the surgeon or are you to see you GI first again?

 

[Edgey]

Hello all,

So I saw my nurse yesterday to discuss starting Infliximab and to get the ball rolling with the paperwork.

Then I get a call from her in the afternoon to say she had spoken to my Consultant and now he is thinking that surgery may be the best option instead as infliximab would just be 'delaying the inevitable'.

Eek! I'd only just got my head round the whole infusion business.

From looking at my notes with the nurse, when I got my MRI results a couple of weeks ago my doc said it 'didn't show anything they didn't already know' (I presumed he just meant inflammation, and me being stupid I didn't ask anymore questions). Turns out I have a narrowing and fistulas through my small intestine :-(. I think it said 40cm is diseased.

Any advice from anyone who has had surgery? is 40cm quite a small piece to cut out?
I know I can head to the surgery sub forum but I'm quite a worrier....

xx

hey Rachel,

the same things happens to me also, i recently had a barium follow through scan and they found my one part of my bowel narrowed causing the rest of my below intestines dilated and then had an appointment with my doctor to chat about humira (similar to Infliximab I think) once i got to the appointment he broke the news about surgery, i was quite stumped so I didn't ask many questions as to how big the piece were and so on I've now got another appointment booked in 6 weeks and by then he said the surgeons would have spoke to me.

I'd be quite curious to know what peoples advice on the situations is too

 

[Artificial]

Thanks everyone

Dusty - I've seen posts by you before where you have said that surgery has put both your children into remission so I'm really hoping for the same thing!

And don't worry you haven't scared me too much ...

Angrybird - I have an appointment with my GI on wednesday to discuss it.

If I do have surgery, is it quite long waiting times with NHS to get it done (like everything I guess!)?

Edgey - I hope everything goes well for you. obviously it's not nice to have surgery but it kind of nice to know there is someone else going through the same thing

x

 

[Angrybird]

The colonoscopy confirming the stricture was done on the 24th May, I had the surgery on the 16th Sept. Didn't think that was too bad.........

 

[DustyKat]

Dusty - I've seen posts by you before where you have said that surgery has put both your children into remission so I'm really hoping for the same thing!

It has Rachel. Sarah has been in remission since July 2006 and Matt since his surgery last April.

I wish you all the luck in the world for a surgery induced remission that lasts a long, long time!

Dusty. xxx

 

[Manzyb]

Hi there! I just had about 18 inches removed about 2 weeks ago. I have been having the nasty diarrhea that Dusty had mentioned. The pain was really bad for the first week, then it started dying down. I'm still not feeling the greatest yet, still moving slow, weak, tired, short of breath, BUT I can now eat and drink without feeling horribly nauseous and throwing up after everything I put into my mouth. That part is a lifesaver so far!

I still have disease in the colon and rectum that I have to deal with, so still having cramping and diarrhea and stuff from there, but will be put on a new medicine at the beginning of Feb.

I really hope that you get the answers you are looking for and that you start feeling better soon!!! If you have any other questions, always feel free to ask.

 

[Artificial]

Hi Manzyb,

Thanks for your reply! Im sick if I eat anything that isn't liquid (apart from bread for some reason) so I am really hoping for the same relief!

Hope you start to feel a bit better soon, just make sure you have lots of rest...probably a bit difficult with that little one though ;-) x

 

[shamrock15]

Hey Artificial. The outlook is probably good for you with regards to surgery. I think to date I have lost over 4 ft to resections, and had in excess of 15 strictureplasties. Remicade wasn't an option for me when the surgeries were done. Since going on remi, I haven't had any issues come up, and I am in fact close to remission after 25 years of this disease. If you go on remi after the surgery, you stand a really good chance of not seeing Crohn's again. Recovery time will depend on things like age and fitness before your surgery. Hope you get a surgeon as good or better than mine, and he is good!

 

[Artificial]

thanks Shamrock! Well i'm not exactly fit at the moment and quite underweight but I have youth on my side (only 23) so I'm hoping recovery time would be quite quick! x