HELP!!! SO CONFUSED!

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Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 8:19 AM (GMT -6)   
OKay...
I met with my surgeon yesterday in what I thought was a confirmation appt. about having my colon removed. Last time I met with him he pretty much diagnosed me with colonic inertia and said he suggested I have my colon removed, BUT he wanted to do one more test to know for sure... which was a pelvic floor exam, where they test the nerve endings in the rectum and sensor reactions, and a bunch of other things I don't really understand.

Well me and my mother go into his office and be begins to tell me that my pelvic floor test was completely abnormal and that the problem is not in my colon, but in my rectum. He started to say that having my colon removed would be completely counter-productive and that we needed to figure out something else to do. He said the my rectum had "forgotten" how to relax and that when I was bearing down and retracting in, the muscles weren't responding correctly. So he went into the whole drawn out speech about how I needed to go through bio-feedback and muscle re-training, that there was nothing else that could be done... Well at this point, I lost it. I started bawling and having a minor break-down in his office. That is NOT a solution and I felt like I was getting written off once again by another doctor.. So I started going into a minor tangent about all my symptoms and how I didn't think that was going to help.. well in my tangent I mentioned the fact that I have, what I thought were, internal hemmoroids that showed when I was going to the bathroom and straining and how was I going to fix that, too. Well he got really shocked when I said this and had me explain it more thoroughly... He like jumped up and said he wanted to do an examination on me right then, so he got a scope and looked inside my rectum while I beared down and whatnot... Well it turns out I have full blown rectal prolapse. My surgeon was in shock, he said he NEVER would have diagnosed this on a 23 yr old and that I was the youngest patient hes ever had to experience this level of rectal prolapse. I think he felt really bad for almost writing me off on a situation that could have caused me SERIOUS problems if not fixed.
I just can't believe what would have happened if I hadn't chose to have my little tangent like I did.. If I hadn't started just talking out my frustrations, he would have let me walk out of his office without a second thought. shakehead

But ANYWAY, I want to know if anybody else has had this surgery... I am have the last 6-8 inches removed in order to make room for raising the walls of the rectum. After the colon portion is removed, he is going to take the excess/slack that occurred in my rectum wall to cause the prolapse and pull it up and attach it to the higher end of my colon that was left...

I think what scares me the most is that I don't know if this is actually going to fix anything! He said the prolapse was CAUSED by the inability of my muscles in my rectum to accurately respond to sensations. So even after the surgery he says I still need to go through muscle retraining... I just want to CRY, I feel like I'm about to go through all this hell and STILL be sick, constipated, bloated, and miserable..

Somebody with any experience/knowledge about this, PLEASE help me!! I'm soooo upset about this. I felt like with having my colon removed, everything was just gonna get better.. And I understand him not wanted to do a surgery that may hurt me more then help me because that's not the problem.. But I just don't see this surgery as a solution for my chronic constipation which I just want to go away!!!

HELP! cry

Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 8:22 AM (GMT -6)   
Sorry, I meant to say I am having the last 6-8 inches of my colon removed in order to make room...

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 9:41 AM (GMT -6)   
I had a rectal prolapse in March of 07 and I had surgery for it as well. I didn't even see a specialist at that point, a general surgeon did my surgery. They ended up cutting me from my navel down to my c-section scar and removing my sigmoid colon half of my rectum. I was constipated before the surgery and after it was about the same, however in December of 07 it started to get worse. The surgery itself wasn't that bad. I don't remember how many days I was in the hospital, maybe three or four. When I came home from the hospital I was not allowed to sit or stand for two weeks. I was told to lay down and to try to lay on my left side; that would help pass the gas. I was able to walk around but I wasn't allowed to stand for long periods of time. It didn't make much sense to me. It took about six weeks for me to recover. While he was in there he also took out my appendix, just because it was there I guess. He said if I had more problems they could rule out the appendix because I didn't have one.

Let me know if you have any specific questions and I will try to answer them for you. I know how frustrated you must be; my surgeon did tell me that it might help my constipation because without the sigmoid colon, the colon is straighter and it makes the stool easier to pass since it doesn't have to go through the loop. Unfortunately it didn't help me at all. The most important thing to remember after surgery is do NOT push. You risk tearing the anastamosis and that would be really bad. Once I healed I had to push again to get anything out; now no matter how much I push or what I take nothing comes out. I'm scheduled for my TC on Monday.

Is your surgery already scheduled and if so, when is it?
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 9:51 AM (GMT -6)   
Thanks for the feedback... though I wish the news had been better haha.. But it's good to know the truth.

Ever since I've been home I've been researching and reading as much as possibly can on the condition... I saw that the removal of part of the colon and the resection is supposed to help the constipation problem, but not always (like you said).. which is REALLY discouraging.. ugh. And that's what I'm scared of.. that I'm just going to have to end up getting a TC anyway, and have to experience even worse symptoms in the mean time.. I am SOO frustrated/discouraged... He even said that the senor tests showed that my colon showed a weakened conditon.. which from everything he told me and I've read.. isn't it just a degenerative conidtion?!? So won't it just get worse over time?? I'm so confused!

His nurse assistant is supposed to call me early next week to pick an exact day for surgery, but like with the TC, we are planning for mid-December.

Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 9:53 AM (GMT -6)   
Question... I can't remember your procedure exactly on the TC.. Since you had the rectal reconstruction, are they able to do your TC by connecting the intestine to the rectum?? Is that possible with the previous rectal prolapse surgery?? Because the rectum got moved... I'm so confused... AH!

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 9:56 AM (GMT -6)   
The colon problem would just keep getting worse; that would be my guess. As for the prolapse, I can't believe he's wait till December to take care of it. I know your schedule doesn't really permit it, but it's really not something you should put off. I would do it as soon as possible if I were you because the prolapse will just keep getting worse especially if you are constipated all the time. I don't know about you but my prolapse was out all the time and never went back in and was bleeding. I wouldn't want that to happen to you and have you stuck waiting till December to get it fixed. That's just my opinion though.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:00 AM (GMT -6)   
I see you are still online, would it be easier to go into a chat room?
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:01 AM (GMT -6)   
That would be great!

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:04 AM (GMT -6)   
Sign in to the ostomies chat room. Do you know how to do that?
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:05 AM (GMT -6)   
I keep trying and it brings up an error message..

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:06 AM (GMT -6)   
Hmmm...I was waiting to see if you knew how. Let me try to sign in.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:10 AM (GMT -6)   
Any luck?

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:11 AM (GMT -6)   
Ok, I keep getting an error message too. That's strange, I've gotten in before no problem. Oh well... As for the TC, I am having my small intestine attached to the rectum. I still have half of my rectum and my surgeon said that's enough.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:15 AM (GMT -6)   
Well I talked to him about time and stuff... Mine doesn't come out except when I a straining to go and it has never been so bad that I have had to physically push it back in, so he said 2 months shouldn't be a problem, or so I hope...
I just don't know what to do.. I've argued my way this far and you can only argue with a doctor for so long.. After all, he has the degree not me.. I just know what I know from google and people as yourself.. I'm just so scared to have this surgery, to just turn around later and have another..
And you mentioned your incision.. he said he was going to do mine LIKE a c-section.. that he was going to cut a few inches straight across under my bikini line.

Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:19 AM (GMT -6)   
I just wish I knew of cases where this was actually a SUCCESSFUL situation..

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:22 AM (GMT -6)   
Well that would be a better incision than what I have. I hate my scar! My navel is not quite in the center of my body, it's off to one side just a tiny bit, and when the surgeon made his incision he started at the navel assuming it was centered I'm sure and went down. Apparently he realized it wasn't and now my scar is crooked. Now you can definitely tell my navel is not where it should be. I never noticed it wasn't centered until a few years ago when a plastic surgeon pointed it out to me.

I hope your prolapse doesn't get worse. Mine was very painful because it was out all the time and I couldn't push it back in. I wouldn't worry about the surgery, it wan't that bad, but I do understand your concerns about having to go back in for a second surgery.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:25 AM (GMT -6)   
How did you go from one situation to the next... Your surgeries were just under two years apart.. How often were you going back to the surgeon and updating him on your condition enough to where he realized a TC was the right thing?? Did he say why the original surgery didn't work?? I don't understand why they do these surgeries if they KNOW that the colon just deteriorates as time goes on...

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 10:36 AM (GMT -6)   
The first surgeon was a general surgeon and I saw him mainly for the rectal prolapse. I told him that I was always constipated and that was probably why I had the prolapse. He said removing the sigmoid colon should fix that. I was so used to being constipated it was almost normal to me and I didn't think much about it. When it didn't help, I just never went back to him. Instead I went to my GP and got a referral to a gastroenterologist. They did the sitz marker test and it came back saying that I had a very slow transit time. They gave me prescription miralax and amitiza; neither of which helped and I was taking two capfulls of miralax three times a day. This was in January of this year. Then one day it got so bad that I was so backed up I couldn't eat, I could barely breathe. I ended up going to the emergency room because I didn't know what was wrong, I didn't know it was from the constipation. The ER doctor told me to see the specialist again. So I went back to the gastro guy and they scheduled a colonoscopy. As soon as he started he said that I needed to see a surgeon to discuss removing my entire colon because the nerves weren't working. He said they put air into your colon to do the colonoscopy and when they do that the colon retracts or something and mine didn't react at all. He gave me a referral to see the colorectal surgeon. She did some tests and a biopsy to see if a TC would benefit me and then I was scheduled.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:48 AM (GMT -6)   
Well I'm trying to keep my hopes up.. My surgeon had some valid points.. Like when I had my sitz market test, I still had all the makers, but they had all settled primarily in the lower part of my colon/rectum. He told me yesterday that this was an indication of obstruction, moreso than CI. Which kinda made me mad he didn't pick up on the possibility of rectal prolapse sooner.. because even after the marker test he told me he thought it was CI.. so he basically contradicted himself inbetween visits..
So overall, I'm kinda getting nervous about my surgeon and his diagnosing abilities.. My surgeon is supposed to be one of the best ones in the south for colorectal surgery.. But like i said, he even almost let me walk out of his office today with ONLY a solution of biofeedback! Ugh! How close I came to serious serious problems! After c/ts, a sitz marker, defcagram, pelvic floor exam, etc.. you think they would have seen something!
And i still keep going back to the fact that he said my colon wasn't responding well. Not altogether bad, but not well... so basically a somewhat slow transit time. I had a colonoscopy two and a half years ago with a different GI.. But my problems just started three years ago (as far as I'm aware of) and the colonoscopy at the time didn't show anything wrong with me..

Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 10:50 AM (GMT -6)   
AND *** that even after the surgery he says I'm still going to have muscle confusion.. I seriously doubt "therapy" is going to fix that... ugh. Sorry for venting so much but I REALLY appreciate you talking to me..

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 9/20/2008 12:30 PM (GMT -6)   
Absbabs,
I had a rectal prolapse back in Dec 2006. when I saw my surgeon to diagnose it, he took me into surgery right away within a week. I am suprised your surgeon is making you wait. Mine was so bad I had to go to the Er to get a catheter put in me to urinate becasue everytime I even urinated, even when I did not have to have a bm, it would come out. That is why I had my surgery right away. You need to be careful and should suggest that you get it done right away. After I had my prolapse surgery, I was in pain for a while, and my bowels were oky for a couple of months, then the constipation came back with a vengence and it just got so bad I gotten very sick and had to have a total colectomy back in aug 7th, 2008. I am not almost full recovered from that. I hope everything goes well for you and good luck.

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/20/2008 1:49 PM (GMT -6)   
Absbabs,
You don't need to apologize for venting; that's what we're here for. Do you think maybe you should get a second opinion? It doesn't sound like you have much confidence in your surgeon. It might be better for you to get another opinion, at least that way if he agrees with your surgeon at least you'll know he knows what he's talking about and you'll have some peace of mind. Just a thought...

Psygirl,
I thought I remembered you had a prolapse too; our histories are similar. I'm glad you checked in today and answered her. You've been such a great help to me, I knew you would have some good info for her too.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 2:45 PM (GMT -6)   
Amanda-
I think my insurance might require a second opinion, so I think that's going to be inevitable. At first I was kinda annoyed by that fact, but now I'm kinda looking forward to talking to somebody else about it. I like my surgeon and like I said before, he is the professional... I keep going back and forth on it because I know that i don't know as much as him.. And I know you're never supposed to diagnose youself. I just hear stoiries like both you and Psygirl where it didn't do anything.. shakehead   But I guess I need the prolapse surgery regardles because that is definitiely not going away... I guess I just don't see why he doesn't go ahead and do a TC, but he is adament that I don't need it.. and like I said, he's got the experience/knowledge, not me.. So I dunno, I guess if I need to get that second opinion I'll know for sure.
 
Psygirl-
Well now ya'll are starting to scare me... he didn't seem like it was an emergency situation. He said it definitely needed to be fixed, and soon, but that two months wouldn't be a big deal. Like I told Amanda, it only comes out when I strain hard and even then it's not very far.. I've never had it come out in any other situation. Psy, what was your history before the prolapse surgery?? Did you got through all the routine tests (the sitz marker, defcagram, etc..) before your prolapse surgery?? If so, what did those tests look like for you??
 
 
 

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 9/20/2008 5:49 PM (GMT -6)   
Absbabs,
I am sorry to scare you. My history before my prolaspe was I had alot of constipation problmes. I did not have any tests because the prolapse happened one day as I pushing to go to the bathroom and all of a sudden, I felt something funny and i looked and there it was, my rectum came right out.This was in Dec. 2006. Back in March 2006, a few months earlier, I saw the surgeon who did both my prolapse and colectomy because I had a painful pidonidal cyst and ended up in the er. At the Er, they recommended me to him. I went to his office and he lanced it for me. That was the begining. when the rectal prolapse happened, I went right to him, and because It was pretty bad, he made the decision to do the surgery right away. I guess my situation was a lot different because it just happened one day and it was pretty bad, that is why. It was so bad he could not do any tests because he did not want to wait til it was worse. For me unfortunately It just popped out all at once without warning or any other indications, so that is why i had to have mine fixed right away. Well, good luck with everything and I hope this helped you out and I am here if you have any questions.

Absbabs
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 9/20/2008 6:10 PM (GMT -6)   

Ya'll are being a HUGE help!! :-)   I really appreciate ya'll talking me through this...

I guess yesterday was just all a big shock. It was nothing of what I expected to hear going into his office.. and the rectal prolapse was a suprise to me. As I said before, I had just assumed they were internal hemmorhoids..

I guess I just need to have faith, and I need to trust my surgeon. I know they wouldn't suggest a surgery if it didn't have some kind of success rate. And that's why he is adament against the TC, because he thinks it will just be avoiding the actual problem and not give me the relief that I need... So, all in all, what it comes down to is that I get the rectal prolapse surgery and see what happens when I recover from that. Who knows? Maybe it will resolve all my problems, and I sure hope it does.. But even if it doesn't, well then we'll know and my surgeon will realize a TC is the thing to do. As much as another surgery would be painful and inconveinent, atleast that option will always be there if things get worse.  

I just need to stay positive. Help is help, right? Its better than not getting any assistance or resolution at all.

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