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How long before your second resection surgery?

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Crohn's Disease
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Posted 6/18/2013 1:19 AM (GMT 0)
Hi everyone. I have not posted in a while but do keep up. I started back on humira in jan after taking a year off of crohn's meds to allow me to get well. The remicade and methotrexate was doing a whammy on the system. When I started back, the TI was very ulcerated and inflamed. I will have another scope in August but I know my system is getting worse with cramps, D, some pain returning etc. I had my first resection 3 1/2 yes ago. I have blown through remicade 2 times, methotrexate , cimzia, mp6. The GI mentioned that there is a theory out there to do more frequent, but smaller surgeries for people like me. I always new I might need surgery again, but I thought it might be like 7 to 10 yes out, not 3 to 4! Has anyone heard of this theory? How many of you have had more than one surgery and if so how long I between the surgeries? Btw. My crohn's symptoms were back within weeks of my first surgery and they have never been in remission since even with all the different meds we have tried!!! Ugh. I am still workin but I know things are getting worse...today I spent at least 2 hours in the bathroom at work. Thanks for any input.
Posted 6/18/2013 1:40 AM (GMT 0)
Two things to add to this theory from my GI. 1) I turn 51 next month and 2) he believes I will resistant to the biological sine none of the 3 are putting me into remission. Tysurbi is a possibility but I have heart issues and immustnbe monitored closet own them.
Posted 6/18/2013 1:40 AM (GMT 0)
Two things to add to this theory from my GI. 1) I turn 51 next month and 2) he believes I will resistant to the biological sine none of the 3 are putting me into remission. Tysurbi is a possibility but I have heart issues and immustnbe monitored closet own them.
Posted 6/18/2013 1:43 AM (GMT 0)
Just had resection 5/22, 40 cm. Like you am hoping for 10 to 20 years, EOL ideally. I'm still not right yet, I have to admit again, those of you that have been there and done that are Super Heroes , Iron Men and Women. I hope you find some sort of relief. 3 to 4 is not fair.

Regards,

T
Posted 6/18/2013 1:48 AM (GMT 0)
mirowpl,

Tysabri, has been know to cause brain tumors, went down that road 40 years ago. That's one road I don't want to traverse ever again.

T
Posted 6/18/2013 1:55 AM (GMT 0)
I have a benign menginoma so the drs have said they really would rather than try tysabri. It would be last resort with close monitoring. So I hear you on that one.
Posted 6/18/2013 1:55 AM (GMT 0)
Opps. Would rather NOT try tysabri!!! Fat fingers tonight. Lol
Posted 6/18/2013 11:38 AM (GMT 0)
I had my first suregery 31 years ago and my second 3 years ago. My symptoms never really went away until about 1.5 years after my first surgery -- but you have to consider it was the 80's and my only med option was sulfasalazine and donnetal. But once this lovely disease reared it's head again about 10 years ago, even with proper treatment I needed surgery at the prior surg site due to scar tissue. Not sure if this helps you or not. My current GI actually goes by the theory CD is cyclical and thinks it will calm down as I age. Still waiting on that to happen!!!!

Nice to talk to another 50 something with this DD. And hope you find a treatment and or diet that relieves your symptoms.
Posted 6/18/2013 5:23 PM (GMT 0)
I have been lucky that my only resect was 23 years ago and none since. I was told to expect a repeat about every 10 years. But...I ruptured so I think when they took out the 18", they took more than just the necessities and I have been lucky for no reoccurence near original surgical site. maybe it was the azulfidine I had for the first year, maybe it was the pentasa, maybe it was that I was chicken and bread only pretty much my first years post surgery...or maybe it is random.

I am 47 and in a cyclical run like lamb said....I have a major flare every 11 years (yaaa end of 2012 was year 22 and I am not back to my norm yet). They talked surgery this time, but I am still holding out to see if I can get things settled down. Doc is giving me a few more months to see....but frankly...I will take surgery if it gives me the relief I had from my last.

Hope things work out well for you.
Posted 6/18/2013 9:22 PM (GMT 0)
thanks. I did not have first sugery until I was 48, so I made it almost 15 yrs from first diagnosis to surgery.  Now, it has been 3 1/2 years of just not right, in fact, last scope was really bad with deep ulcerations and inflamation.  The question is will the humira get it under control.  odds are "NO" since historically neither did cimzia nor remicade, even with the methotrexate injections.  Anyway,  If i do end up with it again, i will end up with surgery 4 years out from the first, but then I am 55 yrs old.  I know you dont want to do this very often, but they only took 6 inches of the small bowel during the first surgery so no concerns from short bowel. 

 

Posted 6/20/2013 11:48 AM (GMT 0)
I'm sorry to have to tell you. But you deserve, and I say that with the utmost respect, to hear the information I can give. My experience is about 1.5 years inbetween each resection. I've had 4. (The first time my surgeon had to do several places.) I went almost 20 years from Crohn's diag. to first resection.
Posted 6/20/2013 1:56 PM (GMT 0)
Did you try any of the biologics? While maybe not as quickly as your case, but my GI has suggested that quicker frequency of rejections but only taking a few inches at a time might be where I end up given that nothing has stopped the progression. Example a surgery every 4 years based on original would only take a total of 20 inches. By then I am 75 yrs old and maybe they have better meds. He is only thinking this way since I am over 50.
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