Need Help - denied for colectomy

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/9/2010 8:09 AM (GMT -6)   
I went to see a GI surgeon yesterday to discuss a possible colectomy for chronic constipation/severe bloating. I was denied the surgery due to my pelvic floor dysfunction, delayed small bowel transit, and dilated/sluggish colon. The surgeon said i probably have IBS...I think that is b/s but no one will listen to me. Anyway, I left in tears as I don't know what else to do now. Surgery was my last resort. I am doing biofeedback for the PFD but have to do an enema nightly to stave off the bloating/constipation since oral laxatives are useless. I am a 25 year old woman and can't (and wont') live the rest of my life in constant discomfort. My Mom wants to take me to Mayo but I dont really think that would do much. I am looking for insight or advice on where i can or should go from here. Could surgery be an option once my biofeedback is complete or would it be futile since my small intestine doesn't work properly either?
 
I don't know what to do. I am depressed and frustrated that no one seems to be able to help me. No one knows why or how this started either. All i want to do is cry but that won't get me anywhere. Please help me....thank you.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/9/2010 10:02 AM (GMT -6)   
find another doctor first, you will find one who will fight your insurance company for you.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/9/2010 10:05 AM (GMT -6)   
Its not insurance that is denying me...its the surgeon.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/9/2010 11:08 AM (GMT -6)   
hi sarahann,
i'm sorry to hear about your problems. i too struggled and still struggling with sever chronic constipation. i'm 36 yrs old and it all started when i was 20. no dr wanted to listen to me either and kept me like this for yrs. i finally found a team of drs at a hospital who listened to me and finally decided on surgery.

i had my whole colon removed on Aug 16 2009. i'm almost 6 months post op. at the first 1-2 months things were o.k, i went to the b/r and had great relief, but unfortunately that all changed now and b/c of my pelvic floor dysfunction i'm not able to go much and in constant pain and discomfort. i don't know if my small intestine is affected too, so i need to go back to the dr and be reevaluated. i'm very discouraged from the surgery outcome as my simptoms are gradually coming back..... i'm again constipated, my worse nightmare.

i still have hopes that maybe there's still something to do to help me, but if there isn't, i'll start to consider an ileostomy.

i think you shouldn't give up and just seek another dr to help you, there are drs out there who will be willing to work with you and help you. i think mayo is a good idea, they have a lot of experience with ppl with a condition like ours. also cleveland clinic are very experienced with this condition and i have no doubt they can help you. pls go to one of those clinics and i'm sure you won't be disappointed.

good luck!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 2/9/2010 11:16 AM (GMT -6)   
sarahann, I think that you need to see another surgeon.  I would recommend that you see a colorectal surgeon instead of the GI surgeon.  If you live near Florida, Dr. Wexner at Cleveland Clinic is best.  He will run tests on you, and then will give you your options.  He won't just send you away.  I've always gotten excellent feedback from him.smile
 
Dr. Wexner did my colectomy and now hopefully my ileostomy in June. 
 
Hope this helps!
 
butterfly

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/9/2010 11:45 AM (GMT -6)   
Go to the Mayo or the Cleveland Clinic.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/9/2010 2:20 PM (GMT -6)   
sarahann
                                Hello, sorry to hear that your doc is not helping you.  How long have you been doing biofeedback?  Is it helping?  My doc had wanted me to do that to but cant afford it.  So anxious to hear back from you.  Leslie
Leslie King


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/9/2010 5:25 PM (GMT -6)   
I agree with the Mayo or Cleveland Clinics...a new doc is definitely in order!!!

LoveMyYorkie
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 2/10/2010 2:25 AM (GMT -6)   

Hi Sarahann!

As I read your post, it made me sick. I know exactly how you feel because your story is a reflection of my own.

I have been sick for almost 3 years and have had a series of problems (i.e. ischemic colitis, intuscusseption, uc, constipation, etc) Most recently I have been diagnosed with a stricture (a narrowing of the large intestine) Since June of 2007, I have worked with numerous GI's and finally went to a colon/rectal surgeon in Sept of 2009. He put me through a CT scan w/contrast, Colonoscopy, Barium enema and a Sitz Marker Study. Both the CT and the scope stated I had the stricture but the enema "appeared" normal however, it stated that it was not able to see some areas because of overlap. I couldn't understand why if I had almost 3 years of history (that continues to get progressively worse) and the recent tests that were given showed a problem, the surgeon was ready to dismiss it and told me to use OTC Align. I did this and 2 weeks later I was sicker than when I first started seeing him (9/07). I called again and he told me to "go on a liquid diet". This was a short term fix but was not going to help me long term. Finally, My husband and I made an appt and went in to see him together with the intent we would get a game plan together. I was beside myself when the Dr treated my husband and I like gum on the bottom of his shoe. He seemed to think I was trying to rush into surgery. I tried explaining that I didn't want a surgery if there was another way to give me my life back but what I didn't want was to end up with an emergency surgery. He kept asking me if I wanted to "die or have a stroke on the table" or end up with a "bag". I was insulted and angry at this point. I told him what I wanted was for a dr to take me seriously and to help me. He then changed his tune a bit and said "your case is complicated". He ordered the sitz marker study. Long story short - I failed it. All 24 markers collected in the same area of my colon. He called me on 12/22 saying that I failed the test "miserably" however, it was "clear" to him that he can now "help me". I was silent for a moment and then I asked "how can you help me"? He told me by performing surgery. He then added that he would still like a 2nd opinion. I welcomed this because I think it is the wise thing to do. I went to a Dr. at OSU for the 2nd opinion. Prior to my visit I was required to collect a CD and the reports of all the recent tests that I had. I did this and sent them to him 2 weeks prior to my visit (as instructed). When I met with him, he did not exam me and asked me several questions. At that point he said he didn't think I had a stricture and that he was going to take this in a "whole different direction". He wanted me to have another test. I was opposed to this because the test he wanted to give me could get stuck if I had a stricture. I asked him if he was going to review my history and the rest test studies and he said he would, "later".  I went home, canceled the test his office scheduled for me, canceled the appt with him and with the original surgeon I had been seeing. I then picked up the phone and called The Mayo Clinic in Rochester, MN.

I know this was a long winded answer for you but I am willing to bet you can relate to some of my story. I would encourage you to go to the Mayo clinic. I researched them and they are the #1 clinic in the country for digestive issues. The Dr's all work together and talk/collaborate. I figure if they can not find the problem and be able to fix it - no one can.

I believe that my illness is bigger than me and not something I can do by myself. I pray to God a lot and I have given this to Him to help me through. I will pray for you and that you too. Only you can make the right decision for yourself.

I know very well how easy it is to want to give up. Please don't.  Surround yourself with family, friends or this forum of friends. You have to be your own advocate when dealing with your health.

Please keep us posted. Please don't give up. Stand tall and strong.

I wish you the very best and the strength to work through this.

Take care -

 

 


sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/11/2010 3:26 PM (GMT -6)   
Thank you all for the encouragement. I am as bloated as a house today despite daily enemas and Miralax. I have a call into my GI doc to please consult with the surgeon about why exactly I was not a candiate for surgery and what I'm supposed to do now. I really don't want to do the whole Mayo clinic thing but if I have to I will.

I have only had one biofeedback session and its bad at all. Basically they stick EKG like electrodes on your inner butt cheeks that measure your pelvic floor activity and displays on on a laptop for you to watch (or that how mine is anyway).

I will keep you posted on what my GI says after talking with the surgeon.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/11/2010 3:29 PM (GMT -6)   
sarahann
  Hi have you ever tried the aloe pills they have aloelax I guess it works for a lot of people...best of luck to you...Leslie
Leslie King


kcshvr
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/12/2010 10:16 AM (GMT -6)   
Sarahann,
I had the exact same problem with the first GI I went to. A friend recommended another GI in Rochester, NY. I went to him and he referred me to a surgeon. Since then, I have had several tests, that I failed miserably! My sitz marker test still had all 24 markers in there after 5 days. I am now waiting to see another Doc to perform the anorectal manometry. I think after this, if everything in my PF works, I will be scheduled for my total colectomy.

I urge you to get away from your original doctor. His whole office. When I was hospitalized for 3 days with pain the original docs partner came in and said "we have run every test, and nothing is wrong with you. I just don't know what else you want us to do". JERK!! It took having exploratory laparoscopy to find most of my issues. My colon is 50% longer than normal and the BE showed it has a couple of huge loops in it.

Good luck. Do what you have to do before you get any sicker.

KC

sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/12/2010 1:23 PM (GMT -6)   
OK, the GI doctor called me back today after discussing my case with the surgeon I saw. They want me to finish the biofeedback (duh) and they'll go from there as how to manage me. The reason I was turned away for the colectomy was because my small intestine doesn't function as normal. They don't want to remove my colon and leave my ill-functioning small intestine left to do all the work. This sound familiar to anyone else? I do feel like giving up especially since I am no longer a candidate for surgery. I feel like my doctors want to help they just don't know how to anymore. He said I am a "tough case." Yes, thank you captain obvious.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/12/2010 1:30 PM (GMT -6)   
Sarahann, I know thats its hard but get another opinion.....My surgeon office just called and said all but two of the sitz markers are in the colon and the other 2 in my transverse...the nurse said the doc is out on Monday but he is on call. So she talked to him and she called me right back and said that even though he is not in on monday he will see me at his office at 12:15, so I am hoping that means he is going to help me. So just have to wait...
Leslie King


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/12/2010 1:40 PM (GMT -6)   
sarahann
I think that going to the Mayo Clinic would be a great idea, they are on the cutting edge of things and can probably help you more...good luck..you are in my prayers...Leslie
Leslie King


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/13/2010 9:24 PM (GMT -6)   
Well day 15 and still have not had a bowel movement, did the citirus thing 2 day ago and nothing.  So the surgeon calle me in the lovely GoLightly today drank all of that and still nothing.  I have never even been able to drink half of a jug of that stuff with out running to the bathroom.  So now I am sick and swollen beyond belief , cramping and in pain, and waiting for the doc to call me back to tell me if I have to go to the ER tonight or not...cant wait for this all to end...night. 
Leslie King


kcshvr
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/15/2010 7:37 AM (GMT -6)   
Leslie,
How are you doing? Did you end up going to the ER? My last colonoscopy I took 2 pills (don't remember what they were called) and had to drink the Golightly. I drank the whole jug and then finally went. It is miserable. I hope you finally had a BM and are feeling better.

Thinking of all of you.

KC

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/15/2010 5:48 PM (GMT -6)   
Kc, thanks so much nope it didnt work..having surgery on Friday a total coloctomy...yikes
Leslie King


kcshvr
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/16/2010 7:21 AM (GMT -6)   
Good luck. I will be praying for a fast recovery and some good bm's!!

sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/16/2010 10:16 AM (GMT -6)   
honestwoman50 - I know your probably scared and nervous but at least you are able to have the surgery...unlike me who just has to suffer. I too drank a whole jug of Golytely and ended up in the ER because nothing came out. Be brave and good luck!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/16/2010 12:55 PM (GMT -6)   
Kc and sarahann   I appreciate your prayers and sarahann I hope they get you some help soon....You guys are the best on this site....You have been my light in my darkest days...so thank you...Leslie

Leslie King


sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 2/28/2010 10:10 AM (GMT -6)   
I did end up making an appointment with another C/R surgeon but I am going to have to cancel it. This past week I have not been feeling well, worse then "normal" so my current C/R surgeon ordered an x-ray. Friday afternoon I got the film done an and went on my merry way about 1 hr drive hm. about 20 min after I left the hospital my surgeon called (yes the actual surgeon called) and asked me where I was what I was doing and if I was ok. He sounded very uneasy on the phone. It ends up they saw air in my colon wall and free air in my abdomen. I was ordered to come back to the hospital and was admitted that night. A CT Friday night confirmed what they saw on the x-ray and I was NPO until yesterday in case I had to go into surgery. The doctors and nurses are amazed at how good I look and feel clinically compared to what is going on inside me (a believed micro perforation). I went to clear liquids yesterday afternoon and can start puddings and cream of wheat type things today. They want to keep me here to make sure my colon doesnt start leaking bile, etc into my body cavity as it is forced to work harder to digest.

They long term plan (so far) is to try and hold off on surgery till my pelvic floor can function and then go ahead with surgery. They still don't know how long I'll be here for. Maybe tomorrow I can go home or possibly Tuesday. They are very concerned about my colon leaking, for obvious reasons. I was told if that happens I could get very sick very fast and if occurred while I was home I might not make it. Thanks for all your support here. This is the first time I've been hospitalized and it sucks :( All I want is to get out of here.

damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 2/28/2010 6:11 PM (GMT -6)   
Hello Sarrahan, Just letting you know that you need to get some more information from another colorectal surgeon. It doesn't matter if you see 10 of them as it's ur right as a humanbeing. Tell your doctor that you want to see other surgeons and dont let them tell you what to do as i went through pretty much the same and 10 years ago i found a surgeon and within 6 weeks i was in having a total colectomy and have had my stoma-ileostomy for the last 10 years so please dont let them dictate to you ok and stand-up for ur right's. I truly feel for you.
 
sincerley,
 
Beverley......
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 2/28/2010 7:48 PM (GMT -6)   
    I would still get a second opinion...you have that appointment, use it!!
    Crohn’s dx 1989
    some terrible years before my
    Proctocolectomy in 2008


    honestwoman50
    Veteran Member


    Date Joined May 2009
    Total Posts : 833
       Posted 3/2/2010 12:47 AM (GMT -6)   
    Hello    I am home after 11 days in the hospital, total colectomy.....will give more details later as it hurts to sit here right now.....Leslienono
    Leslie King

    New Topic Post Reply Printable Version
    26 posts in this thread.
    Viewing Page :
     1  2 
    Forum Information
    Currently it is Monday, October 23, 2017 1:14 PM (GMT -6)
    There are a total of 2,886,163 posts in 316,682 threads.
    View Active Threads


    Who's Online
    This forum has 157779 registered members. Please welcome our newest member, Patricia Strickland.
    901 Guest(s), 13 Registered Member(s) are currently online.  Details
    Tagier, Lapis_29, netsavy006, Michael_T, Around the corner, Doire, 1000Daisies, Nikki83S, 142, NiceCupOfTea, Lynnwood, Lady19861, RyanC


    Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
    Advertisement
    Advertisement

    ©1996-2017 HealingWell.com LLC  All rights reserved.

    Advertise | Privacy Policy & Disclaimer