My Surgery Questions

[n00b]

I was diagnosed with Crohns about a year ago and it was a fairly non fuss thing. I wasn’t in terrible pain but suffered a bit of mild discomfort and bloating. I started losing weight. Lost my appetite and had terrible diarrhoea.

Luckily my doctor instructed a colonoscopy and they found crohns in the terminal Ileum. ( I think this is the most common area).

Anyway I have been on Pentasa since and am a little more careful on what I eat, things have improved slightly and my crohns does not stop me doing anything. Yes I still have D when I do go (although I only ever go 1 or twice a day max) and I still get the mild pain and bloating.

I did go on Budesonide for a few weeks which did help with the D and solid things up but I am off that now so back to the D.
I had a chat with the surgeon at my local hospital as it was a road I wanted to go down as a matter of fact finding and see what my options are now or in the future, he instructed a CT scan. I had an appointment yesterday with him to go through the results.

As expect the crohns is there and effecting around 25cm of the terminal ileum, There is no evidence of any other issues, which I am assuming as a good thing.
Now he has agreed he would perform the op to remove the infected part if I wanted to go ahead.

Now of course I have a million questions as wether or not I should go ahead with it.
From my understanding there is a 50% change of it re occurring, I kinda like those odds however my issue is to what degree will it come back? Will it be worse than before I have the op? Will I wish I had never bothered and just dealt with what I had?
I think my main concern is will my BM increase as they will be removing the ileo valve? The doc said that I may go slightly more than I did when I did not have crohns.

So basically just would like to get people opinions.
There is a chance I could have a great experience from the op and be many years symptom free or is it just opening up a can of worms that will create more problems in the long run?

 

[Bld]

I am no expert as I have never had surgery but chatting to my consultant on Tuesday, he told me that they try and avoid surgery if at all possible in Crohn's patients as the disease is almost certain to return and the patient will end up having multiple surgeries so they try and leave it as long as possible before going down the surgical route. With Ulcerative Colitis, he said that the chances of it recurring are much less likely so surgery is a more permanent fix and therefore performed sooner than with CD.

 

[n00b]

I think it is far from certain that it will return and it is 50/50.


I also do not think that is a given that you will need more surgery once you have the fisrt op. If you are going to need an op then you are going to have to have it anyways (I dont think having an op increases the chances of having a further op)

I was on the understanding that it is much less likley to come back with colitis as you normally has the whole bwel removed with colitis???

 

[kimmy86]

I have just had my first surgery 2 weeks ago! I would say that unless u have a stricture which is why I had my surgery or you are very ill and the pain is unbearable..wait! that's just my advice i never wanted to take the surgery route but my blockage was causing me agonising pain constant vomiting weight loss fatigue and a reliance on steroids I was only going to damage the affected area more by leaving it and was just too sick to carry on without it. With crohns in my opinion it should be the last resort good luck xx

 

[2thFairy]

I really think you should try other medications before surgery. Pentasa is a very mild drug in the line of drugs to treat Crohn's/UC. There are several other options before surgery. As Bld said, most doctors try to avoid surgery in Crohn's patients unless there is a stricture or other emergency such as perforation or obstruction, as it is highly likely to return and they want to preserve as much of your anatomy as possible.

 

[daniellag]

Here is my story:
At 19 I was diagnosed after losing lots of weight very very fast, they put me on pentasa (which made me feel worse), I was very sick for about a year but ended up going into “remission” (not 100% though), I still suffered. At 23 I got severely sick again, spent about a year and a half in and out of the hospital with many complications. They were trying different medications nothing was working and every time they would try to wean my body off of the steroids I would get even more sick then the last time.
My dr wanted to try remicade possibly (at that time it had been on the market in Canada for about 3 months) I didn’t like the huge list of side effects and decided to screw all the pills and everything else and do the surgery.

BEST DECISION EVER. They did warn me that I have a 50% chance of relapse; I was in so much pain and just wanted to live a normal life that the surgery didn’t scare me at all. It has now been 4.5 year (5 years on December 21st this year!) and I have been 100% symptom free and I have not taken any medication what so ever! I feel like a normal person and I live a normal life.
After my surgery I changed a lot about my lifestyle, I stopped eating meat (I still eat seafood), I work out regularily and once a month for 3 days I do a juice fast, no white flours (or anything too refined) I stay away from sugar majority of the time and try to make everything from scratch so I am not eating something with an ingredient list of 50 items.

Looking back I wish I had done the surgery after my first bout with the disease but its okay a learning lesson I guess  Even though the recovery was painful for about the for 6 weeks to not have constant stomach pain and fatigue was a breath of fresh air.

Hope this helps your decision!

 

[Switalski]

n00b,
I had my IC valve along with 5 cm of small intestine and 16-18 cm of colon removed on April 4. Surgery is a decision you and your physician should make. I didn't have the option of foregoing the surgery or waiting. Nonetheless, I have experienced few to no problems as the result of the IC valve being removed. Some people do have trouble with D or have to go to the bathroom more frequently, but I do not. My physician told me that if I do, I can change my diet to add more fiber to slow things down.

Also, after surgery, your physician may keep you on medication to keep any remaining Crohn's under control. You should ask about that.

Good luck with your decision.

 

[CrohnsHobo]

I personally would wait, and I did as long as possible. You can see all the meds I have failed on in my signature. I ended up with a couple of blockages and had the surgery before it became an emergancy surgery. I ended up lost all but all but my ascending colon, I have 1 foot left and a temporary stoma.

Even though I bounced around from med to med, that was over the course of 16 years. The week before my surgery I actually felt pretty good and was having solid BMs. I guess on the inside though it was a total mess.

4 weeks out from the surgery I feel pretty good. On no meds, and in no pain. Just easily dehydrated and tired.

 

[BoFin1]

I have seen several doctors. They all agree on one thing, and that is that if I have surgery it will probably be my first and only surgery for crohns disease. They say that with the good drugs available these days, the stricture will still partially return, but should be mild and I should be able to manage without surgery.

 

[NancyHany]

I'm in a similar route, I'm also contemplating surgery but unlike you I'm in severe pain I hardly make my way to the bathroom. If your pain is mild or not life crippling you have other things to try like Remicade or Humira , personally there's a huge chance I'm trying them first before the surgery.

 

[n00b]

Well after much much thought I am still unsure what to do.

The main questions I still have are:

1) Will removal of the Iliem valve mean more D? The surg said I may go slighly more than before I had crohns but thats all. (pre crohns I was 1 a day tops)

2) If it comes back will it a)come back worse b)be in a different place?

3) Is there a great chance of more ops needed as a result of the first surgery.

I did ask the surgeon all the aboove and it was all pretty 50/50 so I hope you lovely people who have been through it will give me some different points of view.

Thanks

 

[bumble_bee]

I had surgery to remove 2.5 feet of my small intestine in 2005 and I asked for it because I was in so much pain and the prednisone and pentasa I was on weren't doing anything for me. After surgery, I felt great. I was off meds and symptom free for the better part for about 5 years. It came back slowly, pain and some D but nothing compared to how horrible I felt before surgery. I ended up with an abscess because I think I left it too long and my doctor said I should have been on maintenance meds but who knew at the time. That was last year and I've been on Remicade for about 9-10 months now and my Crohn's is in remission. I'm thinking I have a stricture or something now probably caused by scar tissue so I'm not feeling great at the moment but at least a Crohn's flare isn't the cause for once! In my opinion, you have to weigh how badly you feel with the option of surgery. I was at the end of my rope and just wanted to feel 'normal' again so I decided surgery was the best option. I have never felt as bad as I did before surgery even during my last flare and I had a long time where I was symptom free. My Crohn's came back in the same place (terminal ileum) and I've never really had any problems anywhere else.