Total Colectomy part 26

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evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 9/29/2009 11:29 AM (GMT -6)   
Hey I do not know if I am doing this right but I figured I would try and see what happens.  I have not talked to ya all forever.  I have been extremly busy with work.  And of course dirt bike riding.  Only wrecked twice yesterday and didnt get hurt at all.  Thats always a plus, right? 
 
Been feeling all in all pretty well.  If I could just figure out this new lifestyle I would be doing great.  Trying to figure out what you can eat and cant is a chore.  And if you make the wrong decision boy do you pay.  Any the energy thing.  Dont know what to do about that.  Maybe I will try a nutritionist to see if this helps. 
 
Lizzie you are always on my mind.  Hope to hear how things went.  To everyone else, love ya all so much!!  And welcome to all the newbies!  You will love this site.
 
Better go for now.  At work so need to do somthing productive!
 
 
  • Marisa
  • 1999-Appendectomy with Cecopexy
  • 2001-Ruptured ovarian cyst
  • 2004- Emergency hysterectomy
  • Lifetime Chronic Constipation
  • 6-1-09  Total open colectomy with illiorectal anastomosis


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/29/2009 11:48 AM (GMT -6)   
Hi all...
 
Surgery was delayed and not sure for how long. Surgeon was concerned about my recent nause/vomiting and I have to have a small bowel follow through to make sure I do not have a kink or physical issue upstream. I have not had one since January and so he did not feel comfortable doing the surgery or opening me up to check himself due to all of my recent history of complications. I am so tearful and frustrated. I will hear from his office when the test is and then surgery will be rescheduled. He siad it could be 2-3 weeks......before I am scheduled for surgery. So sad.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Reversal scheduled- Sept 28, 2009
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/29/2009 11:52 AM (GMT -6)   
hey Marisa, thanks for starting the new thread!

Lizzie, thinking of you all day honey, and praying everything's going well. can't wait to hear from you!

Marisa, i know what you're saying, i'm going thruogh the trial and error with my food as well. starting tomorrow i'm trying not eating bread and eat tofu for a few days-week and see if the tofu is good for me or not. i definitely think Judy and Christy were right and the wheat is not so good for us.

hope everyone's well.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/29/2009 11:58 AM (GMT -6)   
oh Lizzie honey, i'm so sorry things can't go as planned.... i'm sure you're disappointed and frustrated, but surely you realize this is for the best. they must know everything is o.k to go a head with surgery, they MUST make sure of that.

don't feel so down, it'll all work out in the end. i'm glad you were able to talk to your surgeon about all of this. be patient, it'll happen for you eventually..... it WILL!!!!!!!! don't ever stop believing in that!!!! i'm praying for honey.. always!!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 9/29/2009 1:13 PM (GMT -6)   
Lizzie.. how disappointing! I too may have a delay, but I think we both have to be glad our surgeons are double checking things! Are you still vomiting? What kind of tests do they plan?

Tracy, I have always said our symptoms are similar - but I don't have the same rectum issues. My defecogram showed my rectal muscles are working HOWEVER, my issue IS getting the stool to the rectum! I have no problem pushing the barium out, but on the test where they put it into my sigmoid - I could NOT get it out. I think you (WE) do need to be graphic with our doctors, and I am not! But - as far as pushing liquid out - If I have diarrhea, even that is hard to get to the rectum, and it is thin and flat!

Marisa, thanks for starting a new thread! My goodness.. the other one went fast! Glad to hear your doing pretty good, but still trying to figure out the food thing! I'm sure it will take time.. but wishing you well!

Hodaya, hope your having luck with your diet and finding all the right foods!

I haven't heard anything yet from the doctor(s) and I'm not expecting to until maybe next week.. I just hate the waiting!
~Jenise~


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/29/2009 1:34 PM (GMT -6)   
Tracy, from your description it honestly sounds like what you have is a major internal rectal prolapse and not a nerve damage. of course i can't be sure, but it does sound like it's just all prolapsed inside and that can be fixed.

Jenise, you're right, the waiting is the worse part.

can you guys explain what is that mesh you're always talk about? i've never heard of it before, just from you guys talk about it here, but never really undestood what its all about.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 9/29/2009 2:30 PM (GMT -6)   
Hodaya, we both had total pelvic prolapse (uterus, vaginal, bladder & rectum). In my case, it was a stage III prolapse - so I had a hysterectomy and the sacral colpopexy. Basically, imagine a Y shape mesh, and turn it upside down.. The mesh then is sewn onto the front and back of your vaginal canal and hoisted up, and secured to your back bone! I have heard it explained like knee sock.. where the sock has slipped down to the ankle, this surgery pulls the sock back up and secures it into place! The success rate is very high, however, the mesh has been know to cause problems.. with erosion into the vagina and bowels. So far I'm happy with the surgery - my bladder is much better.
~Jenise~


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/29/2009 2:58 PM (GMT -6)   
thanks, i'm not sure i completely undrstood, but thanks anyway..

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 9/29/2009 5:06 PM (GMT -6)   
Hodaya, they basically anchor the entire pelvic floor to the backbone. In my case they even cut any excess skin, and tightened the vagina. It is like I have never had kids. I should not have any prolapses at all, but the entire pelvic floor is still dropped and sits too low. Is yours like this Janise?

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 9/29/2009 5:23 PM (GMT -6)   
Tracy, They did NOT tighten my vagina.. wish they did, and maybe that is one reason the rectocele is still there?? But - on my last defecogram, they are mentioning that my pelvic floor is is still dropped, considerable! This may be part of our issues, if you do a search for pelvic floor descent, it does cause defecation issues.. and we are more prone for future rectal prolapses and incontinence! (YIKES!!)
~Jenise~


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/29/2009 10:40 PM (GMT -6)   
Hi all....
 
Just a quick update. I am having my small bowel follow through on Thirsday at 830 am and possible surgery pending results Monday or Tuesday. Thats all I know for now. Love ya,
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Reversal scheduled- Sept 28, 2009
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/30/2009 1:44 AM (GMT -6)   
Lizzie, my thoughts and prayers are with you. i'm praying the results show you can have a reversal.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/2/2009 5:41 PM (GMT -6)   
Lizzie,
I'm so happy that your test results are good; hopefully you'll be having surgery before you know it. I'm sorry about your embarrassing moments, but just jot them down for your book....you certainly could write one!!

Oh my gosh, what is going on with the forum?? I’ve been dying to get feedback on my appointment yesterday and it’s not available!! Am I the only one going crazy??? LOL

Anyway, I got back from the Dr yesterday, and I am so upset. I waited almost 2 hours to see him, which isn't that unusual, but when he came in he asked how I was doing, what problems was I having, then said that he saw I tried biofeedback, etc.... I tried to explain about how the only problem I have is that the stool just sits in my rectum and causes alot of pain and pressure, and he sort of interrupted and said "well, we knew this could be an issue" and that the colon was definitely the largest issue, but once that was gone it had the possibility of opening up all other issues. We had discussed this all before surgery, so I agreed he had told me this.

He examined me and did a scope, said small intestine, connection, etc. Looked good. Then he did a rectal exam, and said I have a rectocele, but before doing surgery on that (STARR procedure) he wants to do another defogram and another sitz marker test. He thinks I may have small bowel as well as stomach motility issues. The visit was going well so far..sort of.

I got the feeling from the beginning of the visit that he felt like I was blaming him....nothing he said specifically, and I certainly don't blame him at all for my problems, but he said "well, you're better than before surgery, don't you think"? and "we knew you could have other issues". I told him that of course I understood surgery wasn't a guarantee, but that as far as being better than before surgery, in some ways I am, but others I'm not sure. I explained that at least now enemas, prune juice and grape juice work and that they never had before, but now I have this constant rectal pain and pressure if I don't have a bm after every meal, and most nights I spend 2-3 hours trying to get comfortable by waiting for the juice or enemas to work, whereas before surgery I only took laxatives every 4 to 5 days and the other days at least I wasn't in the bathroom all night. I think that is what upset him.

At one point in the appt, I can’t remember exactly when, he said something like “so do you want a stoma?, we’re running out of options here”. I said I really didn’t except as a last resort, and asked again about the rectocele. I can’t remember what he said at that point.

Anyway, he asked how this rectal pain affected my day to day life, and I got a little weepy and said that it affects it alot, and that we were actually supposed to be going on a cruise in a couple weeks, but cancelled, He said "Why would you cancel?" and I said "well, I don’t want to go on a cruise and not be able to eat...." I was going to continue on to say "like I want to eat on a cruise without spending every night in my stateroom trying to go to the bathroom", but he interrupted me and said that me saying I couldn't eat was a sign of an eating disorder and that he could do all the surgery in the world and if I had an eating disorder nothing would work long term. What the heck? An EATING disorder? I love to eat!! I'm not losing weight, I'm not fat, but certainly not skinny...if I hadn't been so surprised it would have been funny. Anyone who knows me knows I do not have an eating disorder!! I was so angry that I started crying and he went on saying that whenever someone says they can't eat because of pain it's a red flag for eating issues and surgery may never help me and could actually make me worse. Then he said that he had patients with terminal cancer who lived their life as well as they could and basically implied that I had a bad attitude as well as an eating disorder.

I told him that if being afraid to eat because of the terrible pain I had after a meal without a bm meant I had an eating disorder, then maybe I did have one, but I've never in my life considered myself as having an eating disorder, and no one else has ever mentioned that either. I was so ticked at myself for crying, but I was furious and when I get angry I get emotional. I also told him that I didn’t have this problem before surgery. I had other problems, but the rectal pain was something I’d never experienced before. He said “of course not, before your colectomy the stool never made it to your rectum”.

I was shocked. I have always been a very positive, upbeat person and unless I'm talking to you all, or to my husband who knows how horrible I feel sometimes, no one around me has a clue how uncomfortable I am. For the most part I try to live as normal a life as possible, but going on a cruise right now isn’t something I want to try. For anyone who has been on a cruise, the food is amazing, you tend to eat all the time, and then party all night. I just can’t do that right now, so why waste the money?

I think after I told him that this pain was something new since surgery, he back tracked a little and said that of course the tests indicated that I had severe colon inertia, and that's why he did the colectomy, and he wasn't trying to make light of my problem and he knew it was a very serious problem (and said, “look how big your file is, of course I take this seriously", ) but I just quit listening. I was still so upset I just wanted to get out of there.

Now I'm scheduled to start taking the capsules for the sitz marker test on saturday and have xrays next Thursday. I am dreading that, because I can't use enemas at all. He said I could still drink grape or prune juice, but I’m really nervous about not using enemas. Two weeks later I'll have the defogram.

I'm considering writing the Dr. an email. I couldn't say half of what I wanted in the office because I was so shocked and upset...what do you think? I'm still in shock, but I just feel like he totally misunderstands this rectal pain, regardless of what he says. I totally understand I don't have terminal colon cancer like some patients and I never could compare my problems to anyone who does have that, but on the other hand, he is my Dr. and I would think he'd want to know the issues I'm having, unless he just thinks he did the colectomy and his job is over. What I wanted to tell him is that since I don’t talk about this to family or friends (other than you wonderful friends here), I thought his office was the best place to be honest. If he doesn’t want to hear it, maybe I need to find a Dr. who does.

I’ve already called and asked for copies of all of my records. I had planned to get them all anyway, but this just gave me the push to do it. I had planned to go to the Cleveland Clinic in Weston, FL. Before going to the surgeon I currently go to. I’m wondering if I should just make an appointment and try to get in to see someone there. It’s about a 4 hour trip for me, which is what made the decide to use my current surgeon; he’s just one hour away. Also, I did quite a bit of research on my current surgeon and he has an excellent record...even if he is a jerk! Before this happened, I liked him well enough. I was never crazy about him, but I thought he was very competent and honest with me about everything, so I was ok with him. My husband liked him. It’s funny though, because I’ve said a couple times I wasn’t sure if I liked him or not at first....and then my husband said he thought he was good...so much for my husband’s opinion from now on!!

Sorry this is so long, just wanted to share and see what you all think I should do. I'd love to just walk away from him at this point, but I really don’t know if I want to start over with another Dr. I'm just not sure what to do.

Janie

Post Edited (Janiepain) : 10/2/2009 9:55:25 PM (GMT-6)


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/2/2009 11:50 PM (GMT -6)   
Janie......
 
 
First of all, you are so mcuh like me and NO you do not have any right o feel bad or guilty. WOW is all I can say to your surgeons response. I actually feel bleeded with my surgeon. I am really at a loss of words....not having this forum has killed me inside. I am so sorry we could not be there for you sonner. What you are experiencing post-op is not normal and NO you should not be thinking stoma right now. There are many tests prior to be done in order to see what has been going on sine your TC. I am so sad for you....juice and laxatives, etc are not the answer any of us want.  I feel as though he has misrepresented you as a patient....we are unique. All separate in our own. I went to CC in Ohio and have never felt more confident in things being said about my diagnosis. My surgeon here, who is doing my surgery, had no  idea why they would want to retest me....basicallt the "bag" was my life and a k-poch was ridiculous.
 
So I went to Cleveland and saw the director of colorectal surgery and STILL I was upset with the answers....I was not ready for what life may me bringing me. Obviously at this point i had a brand new ileo...and maybe that is what so may of us need for a "period" of time...I do not know. All I can say  id my future was grim, real cloudy and not POSITIVE. I had some time inbetween specialist ( mind you I saw the top in the nation) and my resulys right now are not eben believable.  I would neer had imagined to even have a pressure in the rectum ot have positive feedback from biofeedback. Maybe this is why I can stil not believe everything is going to be "ok".....it never has been.
 
As you can see, i was scheduled for surgery tues, cancelled d/t vomiting, had small bowel testing (just like you they thought it was inertia of my small bowel). I was scared as hell that it had spread....and to be honest with you all, I have not been able to eat anything but oyster crackers and sherbet in the last 5 days. I get nauseated at the drop of a dime....and it makes me so sad. I am rescheduled for Thurs this next week Oct 8 and I will not be talking of my nausea....at ALL. But....I recommenf having all your tests over.....sitz, defogram, and anal manometry. I think I have had all three times at least with 2 times of the small bowel and 2 colonoscopies.
 
I feel so sad that your surgeon is representing you the way he is...I was so mad at his nurse when she did the dame to me for over a year, and ther is NO excuse. Your life has been and continues to be altered due to POOPING and its remenants and it SUCKS. I feel your pain....and I wish you the best. I hope they an find something with you, but besides the sitx...they really need to do a samall bowel followl thought and defecorgraphy, and anal manometry. NOW!!!!
 
I have my surgery Thursday, Oct. 8......soonm but not aoon enough, but then again I am still nauseated. I hate eating....I have had hardly anything in the last 5 days....YOU DO NOT HAVE AN ED!!!! Tell them to suck it!!! seriously. I am down from 109 to 104-105 from this all....what I call it is STRESS. I am so scared...so scared of it not working and I feel  have every right to feel this way. I love you all....hope your doing well.
 
Yhis weekemd in Michigan is "Pulaski Days", its a polish holiday in sort. I am very excited. Although I am Italian/Lebanese...I can still ce;ebrate the Polish culture.  Look forwars to the ultimate Michigan/Michigan State Game tomorrow and the Polish festivities. Maybe one or the other will keep my mind off the future and what it holds.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Reversal scheduled- Sept 28, 2009
 
"The Greatest Healing Therapy is Friendship and Love"


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/3/2009 6:21 AM (GMT -6)   
Oh Janie!! (HUGS)) What a time for the forum to go down, just when you need us the most!

I'm pretty speechless regarding your doctor appointment! I just think too many doctors get their backs up and become so defensive whenever they even have a hint that something may not be right! It's like they can't hear you anymore... I too get emotional when upset and start crying, and can never think of the right words to say.

I TOTALLY understand your canceling your cruise, and anyone who loves cruises, usually loves the endless food! If I couldn't eat, I would also think a cruise is a waste of money, for him to label you with an eating disorder is ridiculous! Eating and then discomfort is not a normal condition, and the constant rectal pressure must have some underlying reason.. and you do need the defecogram to find out what it is. If your rectocele is large, there is a pressure, because you can't empty!

Your doing the right thing by requesting your records, you'll need them if you decide to seek another opinion, and that definitely might be something you want to consider after this last appointment. I would hate the trip to CC, but if your insurance covers it, it certainly wouldn't hurt to just hear what another doctors says.. but wait till your tests are done, so you have all your new tests with you.

If you have his email address, I personally think I would write him. I never can articulate my wording when I am sitting in a doctors office.. so I would write! See where he takes that.. and after the new tests are completed, and you feel like he is acting/speaking in the same way as this appointment, it's worth looking for a new doctor.

Finally, my pet peeve is WHY do these doctor make us wait 2 hours!! (scream). I get so frustrated with that.. I can understand maybe an hour - but 2 hours drive me nuts! I often feel like I should send them a bill for MY time!

Lizzie, I did keep up with your posts before the forum went down, and I just pray that your reversal surgery will end all your misery! Have a nice weekend at your "Pulaski Days"!

As for me.. I did update the forum, but have a few more updates regarding my surgery. Everything is on hold because the colon doctor saw something in the last defecogram that puzzles him... Al I know is that it said I had a moderate anterior rectocele and a much less common, posterior rectocele, plus a "considerable" amount of pelvic floor decent. He wanted to discuss this with my uro-gyn (who specializes in pelvic floor disorders). He has contacted me, and now wants me to be examined together with the colon-rectal surgeon, and to have another pelvic MRI. He scheduled me for Friday, the 9th to have the MRI, and I have an appointment to see him (the uro-gyn) that same day after the test, so I feel I'll have a few more answers by then. My pre-op appointment is on Thursday, Oct 8th, which I was told not to cancel, but I decided to move it to the 19th, (2 days before my scheduled surgery) this way I can go if surgery date remains on the 21st, or I can cancel if things are changed (which I feel it is going to be) . I don't have a clue what really is going on, but just my guess is that I might need more pelvic surgery, (to secure some other areas) as well as the partial colectomy.. which all would be coordinated together. This is just my guess... but in any event, I was so taken off guard when the doctor called last week, felt I had mentally prepared myself for this surgery, and then not to know what is going on just initially frustrated me, but now I feel so grateful that this doctor did a double take... and re-reviewed all my test and is addressing his own questions regarding my case. So, I plan on leaving next Sunday for my cruise and not going to think about any upcoming surgery or future tests! (but I will admit, I am anxious for Friday to find out anything!)
~Jenise~


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 10/3/2009 1:20 PM (GMT -6)   
dear Janie,
that's exactly what i'm scared of, that after doing the colectomy, my surgeon won't want to listen anymore or cooporate with me if i have further isuess. like they feel they did their job and that's it. you CERTAINLY DO NOT have an eating disorder... it's totally ridiculous!!! i've been talking to you on here long enough and was able to get to know you enough to know you don't have one! besides..... did he ever see you underweight...??? i don't think so! i've been suffering with this dreaded CI for 16 yrs, but in all of those yrs it was only last yr that i got a little underweight and it was ONLY b/c it was too painful to eat.

i'm glad you're having the tests redone, that's the first step. don't get discouraged. if you get the feeling he's not cooporating with you, you can always find another dr. don't worry about starting over, it may seem hard, but if you got all your records, you shouldn't worry, a good dr can start from any point. if i felt so upset with my dr, i would definitely write him a letter.

this pooping prob and having our whole life revolve around pooping like this may not be a life threatening condition like cancer, but in a way IT IS! cause i feel like my life has been taken away from me at the age of 20!!!!!! that's when i stopped having spontanous bms and life became h****ll for me. and now i still have probs, and my life still revolve around the loo, cause i've been SOOOO constipated in the last 3 days. i havn't had a real bm in 3 days and i'm getting really worried, cause for someone w/o a colon it's way abnormal.

i'm sick of dealing with pooping issues for so many yrs and i'm so scared it'll never end.... i've just been crying all day and still am right now, cause i'm so scared there's no cure to this problem.

Lizzie, im glad you're able to take your mind off of things and have some fun... good for you!

Jenise, you just made me wonder. i had my first defecogram on Dec. of 2006 at one medical center and it showed i had a front rectocele and a posterior one too. the last test i had was a u.s of the pelvic, which can also show the ability to defecate. i mentioned the postirior rectocele to the dr who performed the u.s and her exact words were "there's no such thing as a posterior rectocele". but to be honest, even though i had the STARR procedure, i still feel there's stools stuck at the posterior area and it frustrates me so much. all i know is that at some point i'll be having a repeated defecogram and manometry tests.

i know you're nerveous about your dr not being sure, but it does seem you're in good hands. try to have the best of time on that cruise.

hope everyone else is well, you are all always in my thoughts.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 10/3/2009 4:55 PM (GMT -6)   
Janie-Just some words of advice; don't think twice about changing drs!!!!!!!! You owe him NOTHING and he is doing notihing for you. Yes he is ordering tests but he is not on the same page as you.  I travel 3 hours one way every time for my surgeon, GI and urologist and I don't think twice about going to see them; as you know they are my 5th GI dr & 6th urologist oh and I'm also on my 2nd PCP.  So, when you can't get what you need, CHANGE doctors, there is one out there that WILL help you and when you find him/her you will be amazed at how well he/she treats you.  I have all of my drs cell numbers and each one of them talk to me when I call their office, they don't have a nurse talk to me, so PLEASE, PLEASE, PLEASE go to the Cleveland Clinic and get the help you NEED.  Let us know how you make out; we are all here for you.  Love you and have you in my prayers.
 
Lizzie-So happy that you can have your surgery this week!!!!!! You have been waiting so long for this and didn't even know if it would be possible and now all of our prayers have been answered.  Try to relax and eat a little to keep your strength up; know that I love you and will be praying for you.
 
Hodaya-Try some miralax or some herbal teas that produce bms.  I've had some days/ a few days of constipation since my surgery and this has helped. Hugs and love to you girl:)
 
Jenise-Be thankful that your dr is being thorough.  Many try to do everything themselves and be a hero and then things are all messed up.  Have a GREAT time on your cruise!!!!!!!!
 
An update on me-I talked with my dr yesterday and asked how many surgeries have been done on this kidney tube and he said less than 100 so I wouldn't find any info on the internet.  I asked the success rate & he said 75% which is what my last surgery was; I asked what if it doesn't work, he said he would have to remove the top of my kidney.  So I decided to go with having the stent replaced every 3 mo until next summer. He thought that was the best choice and even said he is hoping by doing that, that it may even stay open on it's own and he might not have to do anything next summer.  I asked if that is a  possibility and he said he is hoping, so that is my prayer.  Now for the bad news- my daughter's best friend Shawn died Thursday of cystic fibrosis; it was a very sad day for her as she was with him until the end and stayed with him for 2 hours after he went to eternity.  Please keep Shawn, Stephanie -my daughter, Shawn's family and his many friends who he worked with at the hospital until he could no longer work- in your prayers.  The next few days are going to be very hard for these young people as they were extremely close. 
 
I hope and pray that the rest of you are doing well.
Hugs and Love,
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/3/2009 7:37 PM (GMT -6)   
Janie,
I second the motion not to hesitate to go to the other doc even if it is a way away. The minute some docs don't know what to do for a new problem, they blame the patient. This is clearly the type your current doc is. In my 13-month long effort to get my life saved from my disaster pelvic floor "restoration" surgery, I met about 8 docs who labeled me with all sorts of fake psychiatric diagnoses, an eating disorder being one of them. (I was currently vomiting through an NG tube when I was accused of having an eating disorder. My weight dropped from 125 to 99 lbs (I'm 5'7" and large boned). My own PCP who was doing NOTHING to help wrote me up as anorexic. SURE, EVERYTIME I ATE I HAD A SMALL BOWEL OBSTRUCTION FROM 2 LOOPS OF SMALL BOWEL ENTRAPPED IN 3 INCHES OF SCAR TISSUE created by the first surgery.

I even had docs write reports, "oh, just keep using your PEG nutrition feeding tube" which I did not have (like to get themselves off the hook) so they wouldn't acknowledge "yeah you're going to starve to death, but we won't do anything about it."

I have truly seen the darkest side of medicine imaginable, it becomes not about the patient, but about docs covering for themselves, eachother, and so on. It certainly sounds like you were simply filling your doc in on how you were feeling; it does not sound like you were accusing him of anything. Some docs don't take it this way; one little mention of anything less than "Oh, I'm just fine after your surgery" and some of their ego's can't take it. The fact that he was trying to back peddle, says he has a conscience of some degree, but you owe him nothing. Feel free to drive the 4 hours and consult onward.

I had to consult with 11 docs at 7 major medical centers across the U.S. until I found "the one." He rose above all the medical/political crap and focussed on the facts, my test results and what needed to be done to save my life. If I ever have an issue, I am confident he will be there for me. By the way, I now send him post cards from all of my cruises and he's (naturally) delighted. You have my support as well as that of your other posters. God bless. Rosemary

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/3/2009 7:42 PM (GMT -6)   
Thank you all for your responses. You are all so sweet and supportive. What would we do without this forum??

I started taking the capsules today for the sitz marker test. I think I'm going to go ahead and have my tests, and in the meantime try to get an appt. with another doctor. I was gogling Cleveland Clinic today and found some really negative posts about it, so that bothers me. Of course, I know everyone has an opinion and they are well known for their colon specialists, so I probably will end up going there. I only know of one other colon specialist in the Orlando area who isn't affiliated with my Dr. and his practice, and I ran a research check on him and he had a medical disciplinary action against him 2 years ago...so I guess I won't call him. I am definitely going to pursue another doctor though. You know, the more I think about my doctor, the angrier I get. It wasn't even that he said it sounds like I have an eating disorder; it's more that he's dismissing the real issue. I agree with you all, if he isn't on the same page as I am, what good is he?

Jensie,

It sounds like your doctor is on the ball. It's so much better not to rush into something if there are any questions. Just go on that cruise and have a great time. Which ship are you going on? I love cruising, and am very jealous...but we'll go one day soon. We only live 10 minutes from a port in Florida, so hopping on a cruise ship is so easy!! Thank you so much for your kind words today....I woke up to your response and immediately felt better.

Lizzie

Thanks so much for your response. I can truly appreciate your nasty nurse stories a little better now! And I know you're right; the problems I'm having aren't normal and there has to be an answer, even if it means an ileostomy at some point. But for the doctor to just ignore what I'm trying to explain to him and jump to a totally different issue is so discouraging. The more I think about it the more upset I get. He never once recommended that I try miralax or milk of magnesia . I asked him about trying them and he said "sure, you could try it". WHY isn't he making suggestions? I honestly think he thinks his surgery was a success whether I'm better or not. To be honest, I know having surgery was the right thing to do, and I'm sure he did a fine job. But I'm not ok, and there are still problems. I'm just not impressed with him at all any more. I wish I lived closer to Cleveland, I think the Cleveland Clinic in Cleveland has a better reputation than the one in Florida. I could also go to Shands in Gainesville, or Mayo in Jacksonville, but Mayo isn't in our health plan and I'd have to pay more out of pocket. I'll be doing lots of research this week.

I hope you're having a great weekend and not worrying about surgery....enjoy yourself and I pray things work out perfect for you this week. Love you, girl!!!

Hodaya,

I'm sorry you're having problems, too. Can you drink prune or grape juice? Or maybe try miralax? Please let us know how you're doing. I think even at 6 weeks or so out from surgery I also had some bad days, even though most days I was going quite a few times. I hope and pray you don't have the issues I've been having. Please keep us posted on how you're doing, and also, thank you for your reply!!

Judy,

As always, you're a voice of reason. Of course I shouldn't worry about changing doctors. I can think of a million reasons why I shouldn't and alot of them are good (my mom is 85 and lives just a few minutes from me. If I go out of town for more than a day or so I worry so much about her. My nephew was coming down from VA to stay for a few days while we were on our cruise). Anyway, I'm the only person she has nearby and I just hate to leave her alone. She won't go with us...she has a little dog that is old and going blind and gets upset when he's not home...you know how older people are. She has her routine and doesn't like to change it. Having a doctor 4 hours away just isn't convenient, but I know that it's so important to find a good doctor who understands. I'm definitely going to start looking this week.

You have had so many setbacks, I hope and pray you can get your kidney issue resolved. I guess replacing the stent every 3 months is the best idea, and if it turns out that you don't need further surgery that would be wonderful. I'm amazed at your attitude; I'm sure my doctor would be so happy with you! LOL You know, I keep saying I get more and more angry the more I think about that jerk, but he made me feel like a complete cry baby in his office. When he told me he had terminal cancer patients who were living their life and that attitude was everything, I wanted to smack him. I in no way compare my problems to someone in that situation, but I had a double mastectomy 10 years ago, and was back at work in 2 weeks....I went for months back and forth for reconstruction and then for 2 more surgeries and honestly I never complained. I'm not a complainer at all, and like I said, only very few people have any idea about the extent of my issues...not even my kids. For that jerk to try to shame me for not bouncing back the way he expected me to and to ask for more help just infuriates me. Thank you again for your encouragement to leave that jerk.

I'm so sorry your your daughter and her friend and family. I'm sure your daughter will have some real difficulty understanding and dealing with her friend's death. My heart goes out to your family and Shawn's family. How very sad.

I hope everyone else is doing well, and having a nice weekend. Thanks again for all your encouragement and support! Love you all.

Janie

p.s.
Christy, how was your appointment Friday with your doctor??

Post Edited (Janiepain) : 10/3/2009 7:48:51 PM (GMT-6)


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/3/2009 8:03 PM (GMT -6)   
Rosemary,

We must have been posting at the same time! Thank you for your story and advice. What a shame to have to go through so many doctors to find one who can help. What is it with these doctors? When I had my double mastectomy years ago, I had the most amazing surgeon. Ironically my current surgeon worked with him, and we talked about what a great guy he was. He died six months after performing my surgery; he was only 40 years old. He had a heart attack at home. I felt totally lost after he died because we had become so close. We had lots of discussions when I was trying to decide my options at the time.... I was 2 years older than he was, and we talked about hitting the big "40"...he always joked that when I came in for my 6 month checkups, I could always warn him what to expect since I was older! He had 2 young children, and was crazy about them. So many times since he died I've wished he was still around; he was basically a breast surgeon, but he did general surgery as well and I know if he couldn't have done my surgery he would have given me a great recommendation. I wonder if I'll ever find another doctor like him.

I'm so glad things finally worked out for you and I really appreciate your encouragement to find another doctor. That seems to be the general recommendation here!!!

Janie

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 10/3/2009 8:43 PM (GMT -6)   
Wow there has been a lot going on. 
 
Janie I am so sorry that your doctor treated you that way.  It is terrible when doctors try to cover their butt and don't listen to the patient. I know it can be very frustrating but just hang in there and find another doctor who will listen to you.  I still can't believe he accused you of having an eating disorder.  If that was the case then most patients with colon issues would be considered to have an eating disorder.  We are not going to eat well if everything we eat makes us feel terrible or doubled over in pain.  Doctors can be such jerks sometimes!
 
Lizzie I'm glad you are having surgery next week, and I hope you are having fun this weekend!  I really hope things go well for you this upcoming week.
 
Hodaya I can't believe you are dealing with constipation already after the surgery.  I am worried about going too much and to hear some of you talking about being constipated again is worrisome.
 
Judy I really hope you get everything corrected with the kidney issue.  It sounds like you are going through a lot right now.  I will keep Shawn's family in my prayers.  That sounds so sad, and I am sure it will be difficult for your daughter and his many friends and family.
 
Jenise it sounds like the doctor's are being very cautious which is good.  Of course I know on the other hand you were working toward and thinking about the upcoming surgery date.  I am sure it will all work out for the best.
 
I have had my normal issues with being bloated and feeling bad.  On top of that I have had a cold for about a week and a half and then it settled in my chest, and I got pleurisy.  It has happened every year for the past 4 years.  I get a cold then I get pleurisy.  I used to get pneumonia with the pleurisy, but I got the pneumonia vaccine two years ago and haven't had pneumonia since.  I don't know if any of you have had pleurisy but it is extremely painful.  It feels like somebody is stabbing you in the chest when you try to breathe or move in any direction. I couldn't even lay down to sleep.  I had to go to urgent care and get a shot of something and then they put me on prednisone, an anitbiotic, and some narcotic cough meds.  I feel much better today.  I have to be well for surgery, that is my number one priority.  The countdown is on for me.  Hearing some of the stories is worrisome, but I am hopeful my surgery will be a success.
 
Everyone take care and you are all in my prayers.
 
Jen
 
 

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/4/2009 5:59 AM (GMT -6)   
Hi Janie,
I know it would be far for you to come to Massachusetts. However, you could write to my surgeon who was the one who finally listened to me and fixed me the best that could be done. His name is Dr. John Coller, colon and rectal surgery dept, Lahey Clinic - 6 West, 41 Mall Road, Burlington, MA 01805. He is an older, very experienced gentleman who only 4 months after he saved my life, had to give up big surgeries (only because of a back issue, not anything to do with his ability. He now does mostly colonoscopies and small surgeries.) BUT he has a great bunch of younger doctors working with him who are on the cutting edge of medicine in general. Lahey is a well-kept secret where there's a lot of talent. You could write him a short, concise note, enumerate short statements like a chronology; try to get it all on one page. Put all your contact info on the bottom of the page and enclose a stamped self addressed envelope. He actually returns phone calls himself to patients (to those that have seen him, I know, and maybe even to those who write in.) The guy is truly compassionate; a person first, a doctor second. Give it a shot, you have nothing to lose. If things looked good, and you could afford it, it would be worth the flight up to Mass. Sincerely, Rosemary (P.S. It was the Mayo Clinic where they told me to just keep using my PEG nutrition tube which I did not have.)

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/4/2009 6:45 AM (GMT -6)   
Rosemary,

Thank you so much. I will definitely write Dr. Coller. I think I'll go ahead and try to write most of the letter, and then wait to mail it to include the findings of these latest tests I'm in the process of having. Thank you so much. MA is a long way to travel, but honestly if I could find an answer I'd fly to China smilewinkgrin

In the meantime, I forgot I have a couple friends in the medical field here in Florida. I think I'll ask them about a couple Drs. I found. When I asked earlier this year about my current Dr. who I had been with for over a year, one didn't know him, but the other said he was extremely competent, but had a reputation of being arrogant. At that time I just wanted competent. If and when I do change Drs, I also want compassionate!

Thanks again...will keep you posted!

Janie

cyclemaniac
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/4/2009 8:03 AM (GMT -6)   
Been lurking for a bit, maybe just looking for confirmation on my thoughts on how to proceed. A bit of history:

Colonic inertia for years, sub-total laparoscopic surgery done at the end of June. Was in for 7 days with pretty bad nausea that we all chalked up to usual post-op stuff but my gut was working. Went home, next day re-admitted with a bowel obstruction. They sat on me for a couple weeks hoping it would self-resolve but ultimately ended up having surgery to correct, this time surgery was open. Turns out the ends of the IR anastomois were twisted when they were re-connected during the original surgery. During the open they also lysed a fair number of adhesions. So.....ended up staying in the hospital for 5 1/2 weeks total the second time (about 3 1/2 of them postop) since gut just would not wake up. Was on TPN and had NG tube the entire time (except last 3-4 days). Also had a couple UTIs. Incision had to be opened due to drainage (not infected) and had wound-vac applied and went home with portable version of wound vac. Although I have not had vac for awhile wound is still not completely healed. Lost 30 pounds. Went home and did OK for a couple weeks on full liquids but started feeling sick again, admitted at end of August with a partial obstruction that resolved within a week. During that stay had the anastomosis stretched, have also had that done once since then as an outpatient.

Currently I have good and bad days. Some days I feel liquids is about all I can handle. I feel bloated and it feels like things are getting "hung up" in the area of my navel. I also am convinced I have some pretty good adhesions that sometimes prevent me from standing up straight, extreme pain/pulling sensation. Right now my surgeon seems to be in a wait and see mode, opting for stretching the anastomosis as often as need be which helps some for awhile. Other days I seem to be able to handle solids just fine. Some days BMs seem to be about as normal as they will get, other days just liquid, regardless of what I eat/drink. I also have been advised to drink grape juice. I walk daily on the treadmill to make sure my gut stays awake, usually three times, 1 mile each.

So.....conservative treatment from current surgeon (she came highly recommended from my GI and PC docs) or get a second opinion from another surgeon? My luck so far this year with surgeries has not been good and I know every time they go in there is always going to be adhesion formation and not much to do to prevent (I know about Seprafilm but have read some journal articles that just sort of remind me it's not a miracle cure). Did ask my current surgeon about an ileo and she said it's possibly in my furture but it would be temporary and they'd eventually do a take down (more surgery!). She does not know what's going on with my gut, I doubt anyone does. This really is the only thing keeping me from going back to work. I'm not worried about it, I have time on the books and will get paid for another year or so but.........

So I'm interested in your thoughts. Thanks

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/4/2009 8:58 AM (GMT -6)   
Dear Cyclemaniac,
Adhesions are the most underestimated, under-mentioned danger of having any surgery. I strongly feel that risk of small bowel obstruction from adhesions should be on every abdominal/pelvic surgery consent form. THere actually is a group of colorectal surgeons lobbying to have this put on consent forms. I totally agree with them and applaud them for doing this because surgery (their way of making a living) creates the adhesions. So far, wrap on wood, I've had good luck with an extensive adhesion take-down and an application of seprafilm. The Seprafilm doesn't prevent adhesions from regrowing but it lessens the amount and severity of those that do grow. Spray Gel made right here in the states is not fda approved but is used in mostly all other parts of the world. That can be used when laporoscopic surgery is done. The best surgery is no surgery, but for those of us who went down (or had to go down) the surgical path, adhesions can be a life-threatening issue. I almost lost my life to adhesions (rectum, colon, small bowel) all unable to work due to being scarred in from an original surgery that should not have been done in the first place, misdiagnosis etc. Without my adhesion lysis and ileo surgeon I would have died of gut adhesions. You have been through so much, I wish you well. But if you have to have future surgery my thought would be to find a doc who is willing to talk honestly about adhesions and has some sort of plan or some type of adhesion barrier he or she has some faith in. These are just my thoughts based on my own experience, good luck, Rosemary

Janie, Glad you're going to write to my doc, do let me know how it goes. I wish I'd known of him PRIOR to getting into all the trouble I did, but better I met him later than never. His very appealing quality is is that he is competent but not at all arrogant. A real person. Rosemary
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