Resection Tomorrow Morning!

[lgpcarter]

Heading in tomorrow for my first major Crohn's surgery and the nerves are definitely setting in. They'll be going in laparoscopically and doing an ileocecal resection.

I've read lots of your stories, and wanted to thank you all for sharing you knowledge, tips and tricks. Having an idea what to expect really does make this less scary. Interested to hear when people who has this done were able to get back to normal activities and back to work. I am healthy other than Crohn's, which is pretty much in remission thanks to Entyvio.

 

[ronroush7]

I wish you the best tomorrow. I had my resection in April. It took at least two months for things to get back to normal and get to work. Looking forward to hearing from you when you are fee!ing up to it.

 

[Optimistic]

Thinking of you

 

[Layla]

Good luck!
Don't forget to do lots of walking around the wards.

I started working from home around week 2/3 and part time in the office from week 3. Fully back by week 4/5 ish. I was fairly fit before the op, that certainly helped shorten the recovery time and work was very accommodating so I could resume work in my own time without having to push it.

 

[ronroush7]

Best to you

 

[Jennifer]

Hope your surgery went well lgpcarter. For me it took about three months to start feeling normal again but I also had complications after surgery so hopefully your recovery won't be quite as long.

 

[lgpcarter]

Thanks guys. It went well. He was able to do it laparoscopically and incisions not too painful. Only took a little small bowel and then right side of colon. The blockage was a weird mass or something. He wasn't sure what is was. said not typical of crohns so of course freaking out a bit. Pathology back in a week or so.

 

[ronroush7]

Best to you

 

[Switalski]

Igpcarter,

I hope you are doing well. I had similar surgery and agree with Layla's advice/description. Walking is key. A month after the surgery I was in pretty good shape. Hang in there!

 

[ronroush7]

When it had my resection, they had me walk at least twice a day.

 

[lgpcarter]

Thanks guys. I have been up quite a bit today. They also took away my pain pump around noon, so pain is a little bit worse now that I am just getting oral dilaudid. No bowel movement yet but starting to pass some gas and get pretty gurgly. A little concerned that the pain meds are going to bung me up.

Didn't get a great night's sleep last night, but had to have vitals checked every four hours because of pain pump. Hoping for a better night tonight.

Talked to surgeon about colon he removed and he wasn't concerned.

 

[Jennifer]

Hope the pathology report shows nothing of note. Keep drinking fluids if that's allowed right now. That will help to keep things moving along with moving about. Hang in there!

 

[rowdyirish1]

I'm not new to CD but am however new to the symptoms. I have moderate to severe activity in the terminal ileum and after 6 years of constipation (yes constipation) I am just now dealing with urgency and the big "D".... I am researching why more people don't have resections like this earlier on in the disease to prevent more severe complications down the road. I see in some of the signatures that some claim to be in remission however they are still dealing with strictures, inflammation etc.. Everything I have been told by my GI and from what I've read, remission is achieved when there is no sign of disease anywhere!!!! This of course means that you are probably still on medication to maintain remission but there is "NO" active disease. So again my question is why wait until the disease has progressed so far that surgery is absolutely necessary! If you're still going to have to take medicine then why not remove the damage early and then continue the meds to maintain healthy bowel?

 

[ronroush7]

I'm not new to CD but am however new to the symptoms. I have moderate to severe activity in the terminal ileum and after 6 years of constipation (yes constipation) I am just now dealing with urgency and the big "D".... I am researching why more people don't have resections like this earlier on in the disease to prevent more severe complications down the road. I see in some of the signatures that some claim to be in remission however they are still dealing with strictures, inflammation etc.. Everything I have been told by my GI and from what I've read, remission is achieved when there is no sign of disease anywhere!!!! This of course means that you are probably still on medication to maintain remission but there is "NO" active disease. So again my question is why wait until the disease has progressed so far that surgery is absolutely necessary! If you're still going to have to take medicine then why not remove the damage early and then continue the meds to maintain healthy bowel?

No offense. I had a resection six years ago and one of my doctor's associates said at some point the disease will return.

 

[rowdyirish1]

No offense. I had a resection six years ago and one of my doctor's associates said at some point the disease will return.

No offense taken! I only ask because I'm still trying to wrap my brain around this concept
I just read an interesting paper that says too many doctors try to put off surgery at the patients expense! That if the diseased bowel had been removed earlier, the medicine would have been much more effective in maintaining remission!
By waiting until surgery was absolutely a necessity the damage was much more severe and harder to maintain remission post surgery!
Ipgcarter here's to recovery and getting on with life! Sending prayers....

 

[lgpcarter]

Thank you!

Surgery or not is a tough one. I have always erred on the side of preserving as much bowel as possible, fearing that the disease will come back and will have to lose more bowel. I didn't have much choice, as was having partial obstructions due to scarring and it also turned out that there was some sort of (hopefully benign, still waiting for pathology) mass in there.

 

[ronroush7]

Thank you!

Surgery or not is a tough one. I have always erred on the side of preserving as much bowel as possible, fearing that the disease will come back and will have to lose more bowel. I didn't have much choice, as was having partial obstructions due to scarring and it also turned out that there was some sort of (hopefully benign, still waiting for pathology) mass in there.

My best to you.

 

[hcrum87hc]

I'm not new to CD but am however new to the symptoms. I have moderate to severe activity in the terminal ileum and after 6 years of constipation (yes constipation) I am just now dealing with urgency and the big "D".... I am researching why more people don't have resections like this earlier on in the disease to prevent more severe complications down the road. I see in some of the signatures that some claim to be in remission however they are still dealing with strictures, inflammation etc.. Everything I have been told by my GI and from what I've read, remission is achieved when there is no sign of disease anywhere!!!! This of course means that you are probably still on medication to maintain remission but there is "NO" active disease. So again my question is why wait until the disease has progressed so far that surgery is absolutely necessary! If you're still going to have to take medicine then why not remove the damage early and then continue the meds to maintain healthy bowel?

I can't speak for others, but the reason I waited on my surgery is we are only given so much bowel, and when you remove it, you don't get it back. A common occurrence with these resections is developing adhesions. These adhesions can cause the very same symptoms as an intestinal stricture caused by Crohn's, which can lead to even more surgeries farther down the road. This isn't even taking into account the disease coming back and requiring more surgery. Eventually, it's possible to remove too much of your intestines, leading to short bowel syndrome, which is no fun.

Having said that, my resection on July 13 was one of the best things I've done since being diagnosed. I feel better than I have in 2 years (thanks to my strictures). My surgeon said the rest of my small intestine looked healthy, and hopefully my meds will keep my disease under control for a long time.

lgpcarter, I'm glad you're doing well. I'm only a bit under 3 weeks out from my resection, and things couldn't be better. I was in the hospital for 3 days after my surgery. Walking helps a lot. A week after getting home, I actually felt well enough to cut the grass and work in the yard a bit. Today was my first day back at work.

 

[EastCoast902]

No offense taken! I only ask because I'm still trying to wrap my brain around this concept
I just read an interesting paper that says too many doctors try to put off surgery at the patients expense! That if the diseased bowel had been removed earlier, the medicine would have been much more effective in maintaining remission!
By waiting until surgery was absolutely a necessity the damage was much more severe and harder to maintain remission post surgery!
Ipgcarter here's to recovery and getting on with life! Sending prayers....

My GI is seeing me in Sept to discuss surgery. I am newly diagnosed (Nov '15) with little to no symptoms prior to last fall. I have been on Humira since March with no noticeable improvement. I consider my Crohns a "basic" variety- with none of the drastic symptoms others in the forum are experiencing. I have diarrhea, pain when I don't eat the bland diet that I have come to hate. I have a 40cm section affected. Why the rush to surgery? I think because my GI is part of a research & teaching hospital. I'm fine with it as I am having a difficult time dealing with the overall restrictions on my quality of life.

 

[ronroush7]

I can't speak for others, but the reason I waited on my surgery is we are only given so much bowel, and when you remove it, you don't get it back. A common occurrence with these resections is developing adhesions. These adhesions can cause the very same symptoms as an intestinal stricture caused by Crohn's, which can lead to even more surgeries farther down the road. This isn't even taking into account the disease coming back and requiring more surgery. Eventually, it's possible to remove too much of your intestines, leading to short bowel syndrome, which is no fun.

Having said that, my resection on July 13 was one of the best things I've done since being diagnosed. I feel better than I have in 2 years (thanks to my strictures). My surgeon said the rest of my small intestine looked healthy, and hopefully my meds will keep my disease under control for a long time.

lgpcarter, I'm glad you're doing well. I'm only a bit under 3 weeks out from my resection, and things couldn't be better. I was in the hospital for 3 days after my surgery. Walking helps a lot. A week after getting home, I actually felt well enough to cut the grass and work in the yard a bit. Today was my first day back at work.

I am glad you are feeling so good.

 

[rowdyirish1]

My GI is seeing me in Sept to discuss surgery. I am newly diagnosed (Nov '15) with little to no symptoms prior to last fall. I have been on Humira since March with no noticeable improvement. I consider my Crohns a "basic" variety- with none of the drastic symptoms others in the forum are experiencing. I have diarrhea, pain when I don't eat the bland diet that I have come to hate. I have a 40cm section affected. Why the rush to surgery? I think because my GI is part of a research & teaching hospital. I'm fine with it as I am having a difficult time dealing with the overall restrictions on my quality of life.

I'm having a tough time with it too..... I recently went on a family reunion type camping trip and spent the majority of my time in the RV sick!!! With me I tend to dwell on what I can't do rather than what I'm able to do..
I honestly don't know how much of mine is damaged but I would like to find out! I was told my disease was pretty basic as well and mainly within the terminal ileum! I don't know exactly which type of surgery I would require but I'm going to look into it further.
Obviously quality of life is different for everyone but to some it's more important than living altogether!!

 

[ronroush7]

I'm having a tough time with it too..... I recently went on a family reunion type camping trip and spent the majority of my time in the RV sick!!! With me I tend to dwell on what I can't do rather than what I'm able to do..
I honestly don't know how much of mine is damaged but I would like to find out! I was told my disease was pretty basic as well and mainly within the terminal ileum! I don't know exactly which type of surgery I would require but I'm going to look into it further.
Obviously quality of life is different for everyone but to some it's more important than living altogether!!

Sending support

 

[CrohnsPatient84]

Lpgcarter did they ever get back with you on the mass they found? If I understand correctly you had a partial blockage in your colon I'm guessing from scar tissue? This is a similar thing I currently have and I would really like to know how you felt before and after surgery? I am close to the point of having surgery to remove the partial blockage because every time I taper down prednisone I start to have pain.

 

[ronroush7]

Lpgcarter did they ever get back with you on the mass they found? If I understand correctly you had a partial blockage in your colon I'm guessing from scar tissue? This is a similar thing I currently have and I would really like to know how you felt before and after surgery? I am close to the point of having surgery to remove the partial blockage because every time I taper down prednisone I start to have pain.

Let us know how both of you are.

 

[jonique]

Heading in tomorrow for my first major Crohn's surgery and the nerves are definitely setting in. They'll be going in laparoscopically and doing an ileocecal resection.

I've read lots of your stories, and wanted to thank you all for sharing you knowledge, tips and tricks. Having an idea what to expect really does make this less scary. Interested to hear when people who has this done were able to get back to normal activities and back to work. I am healthy other than Crohn's, which is pretty much in remission thanks to Entyvio.

Hi lgpcarter,

I hope you are recovering nicely from your recent surgery. I'm going to be having a small bowel resection in November and was wondering if you had to make any adjustments to timing of your biologic treatment before your surgery? I'm taking Stelara.

Did you hear back about the pathology yet?

 

[The Real MC]

Support sent.

It has been five years since my sole resection surgery, been in remission since then and I hope it stays in remission.

 

[lgpcarter]

Sorry, guys. Didn't get notifications that there were replies on this thread.

Yes, I got the pathology back and it was just Crohn's.

Feeling SO MUCH BETTER than I did before surgery. That mass and scar tissue were causing frequent partial obstructions and constant full feeling and bloating. I can eat anything again (hello, popcorn!) and am healing very well. Bowels are a bit loose, but nothing I can't handle and surgeon said they would settle down hopefully in the next month or so.

My CRP has been sitting around 20 for quite a while, and I am wondering if it was that mass. Haven't had it tested yet, but have a GI appointment tomorrow. Fistulas also much better (had been on Cipro and Flagyl for over a year) and stopped after surgery. No inflammation, pain or drainage.

I did stop my Entyvio 8 weeks before surgery at surgeon's request. Going to see what the GIs say about whether or not I go back on. My preference is to start again, as it is the last drug on the market that I haven't already burned through and it seemed to work well.

Hope that answers all the questions.

 

[ronroush7]

Glad for you. Are you on any medication right now?

 

[eleanor_rigby]

I had a resection and was misdiagnosed. I only got a mere three years remission, which was unmedicated. Four years on and I am feeling worse than prior to surgery. The idea of repeat resections is terrifying. I have 410cm of bowel left. Resections don't always mean years of long remissions and adhesions can cause significant problems in people.

 

[lgpcarter]

Glad for you. Are you on any medication right now?

No, I stopped Entyvio for surgery, stopped Cipro + Flagyl after surgery to see if I could without fistula flareups and stopped Methotrexate on my own after surgery because it makes me feel so awful.

I see GI this afternoon and will discuss meds then. I would like to start Entyvio again, and I they think I should do methotrexate as well, would like to switch to injecting to try to minimize side effects.

 

[ronroush7]

I wish you the best

 

[lgpcarter]

I had a resection and was misdiagnosed. I only got a mere three years remission, which was unmedicated. Four years on and I am feeling worse than prior to surgery. The idea of repeat resections is terrifying. I have 410cm of bowel left. Resections don't always mean years of long remissions and adhesions can cause significant problems in people.

Yeah, definitely not counting on anything at this point, though very grateful surgery went well and I am feeling miles better than I did before. I've had Crohn's for 16 years, so I figure that's not too bad for my first surgery.

I have pretty "classic" Crohn's so no doubt about my diagnosis.

Sorry to hear you are dealing with short bowel and adhesions. Definitely something I worry about as well.

 

[eleanor_rigby]

Yeah, definitely not counting on anything at this point, though very grateful surgery went well and I am feeling miles better than I did before. I've had Crohn's for 16 years, so I figure that's not too bad for my first surgery.

I have pretty "classic" Crohn's so no doubt about my diagnosis.

Sorry to hear you are dealing with short bowel and adhesions. Definitely something I worry about as well.

Sorry my message was not clear at all. I was actually directing it at rowdyirish1 who was asking about why we don't do surgery sooner, and I was explaining it's not always a quick long-lasting fix.

Just to clarify as well, I don't have short bowel - I am still able to absorb b12 and my surgeon didn't remove very much. He stated that "I still have plenty of bowel left". Although of course some people have as much as 700cm of bowel, I think it depends on what you start with. My understanding is that anything between 150-200cm and below of small bowel is when you have short bowel syndrome. I certainly don't suffer any effects that would suggest my bowel is too short. I was just using this as an example of the risks you take once you start cutting bowel out.

I am also not suffering from adhesions (to my knowledge) these can only be detected if they open you up and they are usually more problematic after several surgeries rather than just one. What my issues are I think are a result of me going misdiagnosed and then not being monitored for years following my surgery. I now possibly have scar tissue or inflammation that is hard to get under control.

Sorry for the confusion caused, I wish you success post-surgery. I felt absolutely fabulous for three years and travelled the world. I just wish I had been monitored.

 

[jonique]

Good luck!
Don't forget to do lots of walking around the wards.

I started working from home around week 2/3 and part time in the office from week 3. Fully back by week 4/5 ish. I was fairly fit before the op, that certainly helped shorten the recovery time and work was very accommodating so I could resume work in my own time without having to push it.

Layla, did you have laparoscopic or open resection?

 

[jonique]

I'm only a bit under 3 weeks out from my resection, and things couldn't be better. I was in the hospital for 3 days after my surgery. Walking helps a lot. A week after getting home, I actually felt well enough to cut the grass and work in the yard a bit. Today was my first day back at work.

hcrum87hc, did you have laparoscopic surgery? i'm having a resection on Oct 19th but will be open resection. I don't think i'll be ready to cut the grass (if I had grass to cut, live in a condo) after a week!

I had open surgery in 1986 and 1995 so not a candidate for laparoscopic surgery. Too much scar tissue. Too bad as it would be nice to have a faster recovery. i'm likely to be off work for ~6 weeks. Looking forward to feeling a lot better though! My GI says my CD is in remission, just the stricture is causing all the troubles.