So I had a mild anaphylactic reaction to remicade even with hydro cortisone premed and now the next step is a resection. I'm FREAKIN out! I've been unable to tolerate almost all if the meds they have given me and none of them have really worked anyway. Is this a major thing to have done? The dr hasn't explained much yet as I need to have a colonoscopy first. I'm only 28! I'm worried that if this is the start of me having to use a bag for the rest of my life. Any advice would be great xx
My first resection!! Help!
- Thread starter Chantelle
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Hi Chantelle, sorry to hear about your upcoming surgery. 
I know that train of thought all too well. The fear of, "what's next after meds and surgery?" I had my first (and only so far) resection when I was 17. I'm 31 now and had a nice long 14 year remission after surgery. Surgery in a way is seen as a possible treatment when meds seem to be failing to get your inflammation under control. It can help to kick start remission and it's also possible to go back on medication that didn't seem to be working in the past. I was on 6MP before surgery and am on it again (along with Allopurinol to make it less toxic and Pentasa). A lot of people on the forum have done well with surgery. Feel free to check out others' surgery stories here: http://www.crohnsforum.com/showthread.php?t=30212
Let us know how your scope goes and when your surgery date is (if you do need it). If you have anymore questions feel free to ask.
I know that train of thought all too well. The fear of, "what's next after meds and surgery?" I had my first (and only so far) resection when I was 17. I'm 31 now and had a nice long 14 year remission after surgery. Surgery in a way is seen as a possible treatment when meds seem to be failing to get your inflammation under control. It can help to kick start remission and it's also possible to go back on medication that didn't seem to be working in the past. I was on 6MP before surgery and am on it again (along with Allopurinol to make it less toxic and Pentasa). A lot of people on the forum have done well with surgery. Feel free to check out others' surgery stories here: http://www.crohnsforum.com/showthread.php?t=30212Let us know how your scope goes and when your surgery date is (if you do need it). If you have anymore questions feel free to ask.
Thanks Jennifer its nice to hear that I can possible go back on some meds and they may work for me, I think that was what I'm most worried about. That I'm out of options now that I havnt responded to any of the meds or even if I have had some relief I have ended up not being able to take it coz of the side effects! I will keep this updated as I think I will be having my scope in the next 2 weeks.
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It's not as bad as you think. I've had six surgeries and have a permanent ileostomy - I'm in my twenties. Rather than tell you that one resection does not necessarily mean you'll end up needing more (though that could well be true - you may need no more surgeries), I'll tell you that surgeries generally do not devastate your life. Living with a bag is still living; it's not the end of the world, it shouldn't stop you doing anything you want to do.
So update time, had my colonoscopy today and I have to have surgery to remove that part significant narrowing and inflammation so much so that they couldn't get the scope through. Grateful to now know my next step and I'm hopeful that the surgery will give me a better quality of life. I'm so over being in a constant brain fog and in constant joint pain and that bloody fatigue!!! Just have to wait now for my appt to discuss the said surgery.
significant narrowing and inflammation so much so that they couldn't get the scope through. Grateful to now know my next step and I'm hopeful that the surgery will give me a better quality of life. I'm so over being in a constant brain fog and in constant joint pain and that bloody fatigue!!! Just have to wait now for my appt to discuss the said surgery.
Hi there... let me offer up my input on the surgeries....
They did a colonoscopy in November, and couldn't get the scope through the stricture in my ileum area (no ileum there though, because they took that out in 2007). I had surgery in January (actually 2 weeks ago yesterday), as I was having partial obstructions in December, more frequently than usual.
This was my second surgery. First surgery, they removed 20 cm of my small intestine, the ileum area (so that included just a small bit of the large as well). The second surgery... which was 6 years later... removed about 40 cm... with 30 being in the ole ileum area once again.
Even with both surgeries, I don't have a ileostomy. I have to take some medicine to help with the short bowel issues... but otherwise things are going fine. I am back at work already, started Monday as I felt like I could do it. So far it has been no problem... and I have been working full 8 hour days. Though keep in mind that my job is a rather sedentary job... I sit in front of a computer all day and don't do a huge amount of moving.
I think this surgery will vary depending on the surgeon and what they do. I call my surgeon a bit of an artist. She has done wonders with many people in the past. My last surgery, they did two port holes and a small 2 inch incision along the bottom of my belly. This time around, they didn't even do any port holes... just the two inch incision. I couldn't believe they could do what they did with just that one hole.
Anyway, just stay positive. Depending on how much they remove, you may not need an ostomy. For both of my surgeries, I haven't needed it... so I guess it all varies depending on surgeon and person...
Stay positive, and hope things get better for you soon!
They did a colonoscopy in November, and couldn't get the scope through the stricture in my ileum area (no ileum there though, because they took that out in 2007). I had surgery in January (actually 2 weeks ago yesterday), as I was having partial obstructions in December, more frequently than usual.
This was my second surgery. First surgery, they removed 20 cm of my small intestine, the ileum area (so that included just a small bit of the large as well). The second surgery... which was 6 years later... removed about 40 cm... with 30 being in the ole ileum area once again.
Even with both surgeries, I don't have a ileostomy. I have to take some medicine to help with the short bowel issues... but otherwise things are going fine. I am back at work already, started Monday as I felt like I could do it. So far it has been no problem... and I have been working full 8 hour days. Though keep in mind that my job is a rather sedentary job... I sit in front of a computer all day and don't do a huge amount of moving.
I think this surgery will vary depending on the surgeon and what they do. I call my surgeon a bit of an artist. She has done wonders with many people in the past. My last surgery, they did two port holes and a small 2 inch incision along the bottom of my belly. This time around, they didn't even do any port holes... just the two inch incision. I couldn't believe they could do what they did with just that one hole.
Anyway, just stay positive. Depending on how much they remove, you may not need an ostomy. For both of my surgeries, I haven't needed it... so I guess it all varies depending on surgeon and person...
Stay positive, and hope things get better for you soon!
