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Meeting with a Colorectal Surgeon

After my last flare I have been having a lot of pain on my right lower side. I am in remission and take Humaria weekly and Imuran daily but something isn’t right For me to have swelling on my lower right side and after eating extreme pain.

My GI doctor had me get a CT Scan and then an MRI after she got the MRI results she personally called me and stated she contacted the office of a colorectal surgeon and I needed to meet with him right away.

I meet with him less than a week after my test results which is this Monday.

This is what the CT conclusion showed then I had the MRI:
Chronic changes of Crohn’s including fatty proliferation of the muscularis propria layer distal 10 cm segment of the ileum, ileocecal valve and cecum.

I have never had surgery I don’t know what to expect or what to ask. Any advice/recommendations I truly would appreciate it.
 
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Hi there. Sorry to hear of your situation. I had exactly the same surgery your doctor is referring you for. It went very well and I have had 7 years without any symptoms, until now, but that's another story. I found the 'sticky' notes on here from Dustykat at the beginning of this surgery section to be very helpful. Happy to answer any specific q's you have about my surgery.
 
After consult how longe before your surgery was scheduled?
Did they remove more than expected?
Recovery time and Diet after surgery?

i am really anxious about Monday. Thank you for responding Adam1971
 
Well, I believe I had surgery about 3 weeks after the consult. They removed about 8 inches of terminal ileum, ileoecal valve, and appendix (which is right there). It was about what was expected.

Recovery was fairly rapid. The first 5 days I was in the hospital. It hurt for a few days but steadily got better. After about 3 weeks I was almost back to normal activities. Lot's of sleep. Emotionally it was hard at first just because I felt afraid, but lots of support and the safety of the hospital environment was enough to make me feel ok.

My diet was the brat diet for a little while-bananas, Apple sauce, rice, toast. Easy to digest. Slowly i got more brave and once I was ready I ate whatever I wanted with no worries.
 
I am terrified but know I cannot continue in this pain. After I eat my right side only becomes swollen and the pain...too much along with feeling nauseous. When I sleep and go on my right side it wakes me up.

I am currently in remission and take humaria weekly and Imuran daily. From what I have read being in remission at the time of the surgery is a plus. Did you have any acccidents going to the bathroom before or after the surgery?
 
I am happy to share what I can. I don't remember any accidents before or after. Surgery made a huge positive impact on quality of life. I was in pain and nauseous all the time before and that all changed afterwards.
 
Also, I too was super anxious about meeting with the surgeon. He was great and put my mind at ease and answered all my questions. I hope you have a similar experience.
 
I was very unwell when I had my surgery in a similar area so took a couple of weeks to get out of hospital and a few weeks at home to really recover. Initially it will hurt a bit but theyll give you good pain meds so you can sleep. Take them while you need to and stop when you can. Whilst in hospital I felt queasy and tired so peppermint tea, ginger biscuits, eye mask and ear plugs or headphones to help sleep on noisy ward. Maybe an audio book or light reading to pass the time. Once home I was on high calorie low fibre diet so lots of scrambled egg, milkshakes, ham cheese and avocado sandwich with full fat mayo on white, shepherds pie, ice cream, jelly. Veg cooked to nearly mush. No salad, crisps, nuts, fruit skin, pips or seeds. Basically nothing that will irritate or grate against recovering intestine. My strong advice is do some cooking in advance and put meals in the freezer. Also check your car insurance, I couldn't drive for six weeks after abdominal surgery (might be less if they do keyhole rather than open surgery). At home keep the wound clean and no heavy lifting - rest is the main thing. I had no accidents after resection.

Take it seriously and don't try to do too much too soon. Find a good box set to get stuck into. It's not fun but it's doable and each day is better.
Best wishes.
 
FIrst off, I know you are very uneasy about what you are dealing with and I am sorry that you are having to deal with this. Make sure any questions you wish to bring up to the surgeon that you DO bring them up, no matter how silly you may think they are or if you think they have nothing to do with it. The surgeon is there to make sure you are well informed as to what it is that you are dealing with and can make the proper decision to take care of it.

I personally didn't have the chance to ask questions before my first surgery, as it was an emergency procedure done due to my colon perforating and ending up in a critical state prior to and after surgery. The second time I needed a resection was a more controlled situation where I could get a second opinion and ask all sorts of questions. You've got this and please let us know how everything goes.
 
I was very unwell when I had my surgery in a similar area so took a couple of weeks to get out of hospital and a few weeks at home to really recover. Initially it will hurt a bit but theyll give you good pain meds so you can sleep. Take them while you need to and stop when you can. Whilst in hospital I felt queasy and tired so peppermint tea, ginger biscuits, eye mask and ear plugs or headphones to help sleep on noisy ward. Maybe an audio book or light reading to pass the time. Once home I was on high calorie low fibre diet so lots of scrambled egg, milkshakes, ham cheese and avocado sandwich with full fat mayo on white, shepherds pie, ice cream, jelly. Veg cooked to nearly mush. No salad, crisps, nuts, fruit skin, pips or seeds. Basically nothing that will irritate or grate against recovering intestine. My strong advice is do some cooking in advance and put meals in the freezer. Also check your car insurance, I couldn't drive for six weeks after abdominal surgery (might be less if they do keyhole rather than open surgery). At home keep the wound clean and no heavy lifting - rest is the main thing. I had no accidents after resection.

Take it seriously and don't try to do too much too soon. Find a good box set to get stuck into. It's not fun but it's doable and each day is better.
Best wishes.
You really went thru alot thank you so much for sharing!! I am definitely looking into the brat diet and rest seems to be the key to post surgery ...I hope you are feeling well these days!
 
FIrst off, I know you are very uneasy about what you are dealing with and I am sorry that you are having to deal with this. Make sure any questions you wish to bring up to the surgeon that you DO bring them up, no matter how silly you may think they are or if you think they have nothing to do with it. The surgeon is there to make sure you are well informed as to what it is that you are dealing with and can make the proper decision to take care of it.

I personally didn't have the chance to ask questions before my first surgery, as it was an emergency procedure done due to my colon perforating and ending up in a critical state prior to and after surgery. The second time I needed a resection was a more controlled situation where I could get a second opinion and ask all sorts of questions. You've got this and please let us know how everything goes.
Thank you for sharing your story! it has been very uneasy dealing with this and there is comfort knowing I am not alone!! The second surgery how long after the first? Were you on medicine after the first resection?
 
After my consult today we agreed surgery is the best option at this time. They are scheduling me tomorrow and it should be in the next 7-10 days. i asked a lot of good questions with your experiences you shared...THANK YOU!! I am terrified but know this needs to get done and I will remain on my medicines after surgery.
 
I'm so happy you made it to the other side of the consult! You seem more at ease. I'm glad it went well. You will feel better after surgery I am sure.
 
Thank you for sharing your story! it has been very uneasy dealing with this and there is comfort knowing I am not alone!! The second surgery how long after the first? Were you on medicine after the first resection?
I had an ileostomy for a year after the resection, then went from 3/2014 to 8/2019 (which is when i had the second resection done) so 5.5 years between. I was not on a maintenance medication right after the surgery, and didn't start one until the beginning of 2018 (Remicade)
 
I had an ileostomy for a year after the resection, then went from 3/2014 to 8/2019 (which is when i had the second resection done) so 5.5 years between. I was not on a maintenance medication right after the surgery, and didn't start one until the beginning of 2018 (Remicade)
It seems from my GI doctor and Colorectal surgeon medicine after surgery is very important after much research. I hope you stay in remission!
 
I hope you also start feeling better!!

I have been feeling much better. I had a colonoscopy today and my doctor said everything looked great including the location of the anastomosis (where I had surgery). She wants to do CT or MRI of the rest of my intestines to make sure there aren't any problems there. She is a new doc to me and I've really lucked out this time. She's thorough and concerned and we'll educated about crohns. My first gi doc was a dud.
 
I have been feeling much better. I had a colonoscopy today and my doctor said everything looked great including the location of the anastomosis (where I had surgery). She wants to do CT or MRI of the rest of my intestines to make sure there aren't any problems there. She is a new doc to me and I've really lucked out this time. She's thorough and concerned and we'll educated about crohns. My first gi doc was a dud.
That's great. Having a doctor that is thorough and knows their stuff is quite important. The Colorectal surgeon I had been seeing going into 2019 was quite good, and I had great trust in him, however he wasn't sure with the level of involvement and with my extensive history if he was the right person for the job and wanted me to get a 2nd opinion from a surgeon affiliated with a tertiary care center. When I went to see the surgeon (who just happens to be the head of colorectal surgery for this health system) he even said that the surgeon who referred me to him was a great doctor and usually referred the trickier cases to his office. That meant a lot to me also as the doctor could have just had me do a release and then whatever happened he's off the hook; he actually cared enough to refer a patient to a doctor affiliated with a different health system. Sometimes you get lucky :)
 
That is an amazing doctor!! Wouldn’t it be nice if all doctors cared that much...I am also very blessed now with my team and they care so much!
 
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