Remission at Last!!

[SarahAnne]

I just got released from the ER yesterday, I thought I had a partial obstruction based on my pain, but it turns out it was gastritis. I also have a couple of kidney stones that aren't doing much, but could benefit from being shocked. I had a ureter resection a couple of years ago, and I don't want scar tissue there causing another stone blockage.

In the process of trying to locate the source of my pain, I had a colonoscopy, endoscopy, upper GI w/sbft, x-rays and a ct. Even though I do have gastritis and kidney stones, the doctors couldn't find any active Crohn's. After years of being so ill and finally having to have surgery, I am finally in REMISSION! :dance:

I'm still having little problems and I don't feel like the bionic woman or anything, but I do feel better than I have in years. My husband and I bought a canoe a few months ago and we've taken the kids out on a few adventures. Stuff I couldn't have done last summer because I had zero energy and so much pain.

Starting the Remicade seems to be the beginning point. I was getting nowhere on Humira, but after I switched and then had surgery to remove the stricture that was causing me problems my Crohn's got better.

Remicade was a miracle drug for me. I know it isn't for everyone, but it turned my life around. I had a reaction to it once, because the lab neglected to pre-medicate me. I stopped it for a few years, and restarted it with no problems. I know that most doctors recommend not trying again after a reaction, but I'm glad I did. Don't be too scared to try it, if you're worried talk to your doctor.

For me, best thing ever. :heart::heart::heart:

 

[annawato]

Fantastic news, I am so happy for you. I also restarted infliximab ten days ago after switching to humira for a year (mainly cos it was easier) but have developed another abcess while on the humira so its back to infliximab. I'm not sure how effective it was last time - i didn't suddenly feel wonderfully well like some people do and it doesn't sound like from your post that you did either but it did manage to push you into remission so that is fantastic. Hopefully when your other health issues get sorted you'll be feeling even better.
:heart: Anna

 

[hoons]

Congratulations! Brilliant news

Would you recommend getting a stricture removed? I am currently on Remicade, which whilst keeping me generally well and symptom free, is not reducing the size of a stricture that is the reason I am on remicade, so it has been suggested to me I have it chopped out! Currently wondering if it is a good option of not?

Well done again!
tom.

 

[PVail]

So good to hear someone getting remission . Have forgotten what it's like to be reasonably normal. Anyway I hope it lasts and good luck.

 

[SarahAnne]

Tom - The way I understood it (and I'm known to space out when the docs start talking), is that Remicade can slow the rate that a stricture narrows, but it won't make it disappear. I had been on Humira and it was doing nothing for me. By the time I started the Remicade it was pretty much too late to make a difference as far as that stricture was concerned.

I had the stricture removed in October, I was narrowed down to 5mm and liquids hurt to pass. I continued my Remi treatments and scheduled the surgery in between them. My GI is convinced staying on the Remicade and having the stricture removed put me into remission. Surgery is a big deal, but I am incredibly glad I had it done. I was down to eating nothing and weighing 82 lbs.

Of course, now I have to worry about the possibility of more scar tissue where I had surgery and another stricture developing. I still wouldn't change my decision though. I'm not 100%, but the difference is pretty amazing nonetheless.

 

[Grumbletum]

That is such FANTASTIC news. Long may it last xxx

 

[hoons]

Thanks for the info! I'm in two minds, i have recently had to turn down a job in Australia because of the expensive treatment I receive (which i get for free in the UK on the NHS, but would have to pay for in Aus), so the potential for surgery is attractive as it might give me the chance to make my dream move. On the other hand, whilst the Remicade is keeping me generally pain free, part of me thinks I should just stay on it as long as the Doc's let me, and stay in the UK.
Time will tell though I guess. I've just upped remicade infusions to every 6 weeks ... i'll just have to keep re-evaluating when I go see my specialist (next up in 6 months!).

 

[annawato]

re. surgery

Its a very difficult decision about whether to have surgery or not and depends on your circumstances. Unfortunately with Crohn's it tends to reoccur where you have the surgery and then there are problems with scarring etc. I guess it depends on how much your life is being affected by the the stricture. I wouldn't jump into surgery if its not necessary however, I got a good two years after my first resection so that was worth it. Have had 4 ops since then so maybe i've just been unlucky. I'm sure lots of people would highly recommend surgery.
Have just reread what I've written and realised I probably haven't helped one iota, haha, it will be interesting to hear other peoples feedback.
Anna

 

[hoons]

Thanks Anna, any advice is good advice!

and sorry Sarah, I didn't mean to steal your thread. i've posted my question onto a new thread on the surgery page.

Congratulations again on your remission

 

[Dave G]

I am no doctor...and don't play one on tv either! LOL But when I had my one surgery to remove the issue, the docs decided it was best to remove far beyond the issue on either side of the issue. The length was part of small intestine, appendix (cause it was there) and the entire accending colon when the issue was around the ilium.

Whats my point?

Since my surgery and reading the forum and other resources, I have come to the realization that no matter how much they take out, most people will have re-occurance where they join the 2 ends back together! Possibly over time might require additional surgerys to take even more sections out...

Therefore, if I could go back in time, I would ask them to take out the least amount of intestines...not the most just on the chance of no re-occurrance.

Time will tell...

 

[SarahAnne]

Dave G, I completely agree! Less is always better, especially with IBD, because you never know how long the good stuff you have will last!

I had a pretty bad stricture and had my second surgery in October. The surgeon was explaining that I had two "bad" areas that had to be removed, they were separated by one inch of healthy bowel. The area was too small to be resected and saved, but as much as I've lost, the surgeon and I certainly mourned that one good inch!!