Post # 1
Its a surgery to remove your colon.
I got the news last night from my dr that I need the surgery. I won’t give you my entire life story but I’ve suffered from constipation since childhood. This year its gotten to the point where I only go once every 3 weeks if I am lucky. No exaggeration. So I finally gave in and saw a dr. He had me have a colonoscopy done and that came back normal as well as biopsies he had taken. Then he sent me for a SITZ marker test. That is a test in which you swallow a capsule with 24 plastic rings inside and then have an xray 5 days later to see where they are or arnt in your colon. My dr called my last night at 9pm to let me know I pretty much failed that test as all those rings were still in my colon and scattered around. He said this means my colon isn’t working as a whole and isn’t processing things as it should. He said I need to have surgery to remove my entire colon. I told him I cannot have this done until school let’s out as I have a 4 year old in school and no one to care for him while I’m in the hospital and recovering for 2 months. He will be with his grandmother during the summer. The dr said this was fine and he said he will see me in late spring before the surgery. He told me to take muktiple laxatives as I did to prep for the colonoscopy to clear myself out in the meantime.
This all came as a huge shock to me last night. I have many other health issues and they just keep piling on. My mother wants me to get a 2nd opinion. Mainly for her piece of mind, I guess. I know I will end up ultimately with the surgery. I am scared, worried, and curious as to how my life will be after I recover. Does anyone on this board have any experience with this? I know I have a good 6 months to go but I can’t help but think about it now.
Post # 2
For such a drastic surgery, I would definitely be getting a second opinion. There are lots of possible causes of constipation — did your doctor look into all potential explanations? I know in your last post, people were mentioning diet, exercise, and water intake as possible contributors to constipation and you said your doctor hadn’t really discussed those variables with you. If you haven’t already, I would try as many lifestyle modifiers as you can to see if your constipation issues improve at all — a major surgery like this is something you want to avoid if you can, obviously.
Post # 3
WarrenWE: Was the doctor a gastroenterologist -a doctor who specializes in the digestive system?
Post # 4
Do you have a diagnosis? I would want some answers before doing something so drastic. Simply knowing it’s not working properly wouldn’t be enough for me, I would want to know why so I know I’m not missing out on other treatment options. Getting a second opinion would be reasonable, even with a diagnosis.
I haven’t gone through anything that you are dealing with, but I have struggled with health issues. I recommend seeking out whatever support you can find. I did some counselling leading up to treatment to deal with anxiety I had about that. It turned out to be really useful as my anxiety created problems with my treatment, and even with the counselling leading up I still had to work on it once it had started, but I at least had the tools there already. The typical practical support is something you will probably need as well, I found starting early helped.
Post # 5
cmbr: I have tried many of those things with no luck. Nothing seems to be working at all.
julies1949: yes it was a GI dr
AB Bride: no he did not give me a diagnosis over the phone. It was a very short and to the point phone conversation. He didn’t really discuss anything about it with me at all. I was on google for 4 hours straight today researching this surgery until i ran out of pages to look at. I have so many questions id like to ask. So I will write them all down and ask the 2nd opinion dr. I came up with a diagnosis that could be what it is…I don’t know but it sounds a lot like how he and I describe. It called Colonic Inertia. I’m no doctor but it just sounds like that could be it. I see a therapist once a month for bipolar but am considering seeing her more often due to this change. This is creating way more unwanted stress and anxiety in my life that I am not prepared to deal with. I also searched out forums for this surgery and only could find colon cancer forums. I do not wish to be the oddball in such a sensitive forum so I just read through the posts and refrained from posting myself. I have 2 girls I know personally that have gone through this situation or something similar. One has had the exact surgery I hope to have while the other has colon cancer and is bagged. Both are very nice offering good advice and are talking to me when I’m freaking out.
Post # 6
WarrenWE: Are you having a follow up appointment? I would do that, get your questions answered by your current doctor and then seek out the second opinion. I’m glad you’ve found some people to talk this through with. Most people would probably be having quite a bit of stress and anxiety about it, I know I would.
Hopefully you’ll get some good answers that will allow you to make the right decision for yourself!
Post # 7
AB Bride: I’m not sure if I’m having a follow up with my current dr. When I asked when I should see him next he told me not til right before the surgery. The phone call was very quick and shocking so I did not have any idea as to what questions to ask. Yesterday I thought maybe to make a follow up with him anyway to ask questions but then I figured I could just ask the 2nd opinion dr them. I’ll probably choose the 2nd dr for the surgery as he is through my preferred hospital. I finally found a forum with people like me on it so I’m hoping that will provide support as well.
Post # 8
WarrenWE: I think you definitely should see the first doctor again as well as your 2nd opinion dr to discuss all your questions. Surgery is a big step, as you know, so you want to make sure you have all the facts and are with a surgeon you trust before you make your informed decision.
Post # 9
WarrenWE: That sounds really odd to me, but we likely are dealing with different healthcare systems.
If possible, see your current doctor soon. Otherwise you aren’t really getting a second opinion, as you need to be informed of the first opinion first! The diagnosis may even be different between the two doctors.
Post # 10
Definitely get a second opinion. Going through this surgery if it’s not necessary will be hell.
My dad had the surgery and wears a colostomy bag. It took him a really long time to actually start to heal. He had a perforated bowel due to either Ulcerative Colitis or Chrohn’s disease (I don’t remember, they went through so many diagnosis).
He had a second surgery to relocate the pouch since the first one was rushed. It was an emergency surgery and he was about to die.
When that healed enough he went in to have a surgery again to remove the pouch and instead they make a little sack of some sort inside you. This may be an option as it was a few years ago and fairly new then. Anyway, it eliminates the need for the bag.
Well, that thing ending up bursting and he had to have surgery to get the bag again. It took years for him to be remotely back to normal.
I’m not trying to scare you as I don’t think you and him have the same condition at all, but I wouldn’t let someone rush you into surgery without knowing all of your options and trying other things first.
If your life isn’t at stake, see what else you can try before surgery.
Post # 11
AB Bride: now that I have thought about it some more, I agree. I plan to make an appt with my current gi dr to discuss my actual diagnosis and the many questions I have. He has a very hectic busy schedule and I had to wait 3 months for the first visit so I’m hoping they can fit me in somewhere.
Post # 12
WarrenWE: Definitely get a second opinion. That’s a dramatic surgery. Also, I work with hundreds of patients in both a hospital and a doctor’s office and I’ve never once known a doctor to advise a patient with that degree of constipation to take multiple laxatives. They can back up on you. Best case scenario is severe vomiting. Worse case scenario is a ruptured colon. Either way you’re not in the best condition to be power washing your intestines when your colon isn’t functioning properly and the debris has nowhere to go. Be careful and good luck!
Post # 13
WarrenWE: I’m not impressed with a doctor that tells you this on the phone as opposed to an office visit, doesn’t give you a diagnosis, and is then like “Yeah, catch me in 6 months right before we do major, life changing surgery. Until then, don’t call me, I’ll call you.” Just, no.
Definately get a second opinion. Do enemas not work for you(sorry if too personal a question)? You can get the equipment to do cleansing enemas at home(actually pretty easy). I would think they would try putting you on a bowel routine before removing your entire colon.