TOTAL COLECTOMY PART 30

Rosemary, with your descending loop of small intestines, which I believe is called a enterocele , wouldn't the correct method of treatment have been closing the "pouch of Douglas". I have read that this enterocele can happen to women after a hysterectomy, and simply by closing the pouch of Douglas, it fixes this condition. Far simpler that what your surgeons put you through! Are you all packed and ready for your cruise?

Tracy, my doctors told me that they were attempting to treat my symptoms and conditions multiple ways (hence the resection, rectopexy, rectocele repair & perinoplasty). They said it is extremely difficult to understand and correct women with pelvic floor issues. Hopefully, this will improve my difficulties, but they aren't completely sure it will! They already did mention that after surgery, I may need bio-feedback.. but said they would tackle that down the road. The studies do clearly show - that correcting this issues are challenging!

Hope you all had a wonderful new year!

I honestly tried to go out with my husband because I have not been able to do anything with him in so long. BIG mistake. I had thrwon up at work and was in so much pai, but I put on my 80's gear for him and ventured out for a little bit. We were home right after the ball drop, but I feel horrible still. I emailed my surgeon last night about going inpt/pr to ER to get some hydration and pain meds. I just felt I needed to do something for him for once, since all he does is everything for me. I slept from 1 am till 1230 pm!!!! by body is telling me something and now that I am up I just feel listless. Ugghhh I am thinking I just may have to go to the ER to get refueled. Oh my labs after taking 40 of potassium the night before were ok yesterdat thankfully. I still think even though they were ok that I am still dehydrated. My potassium after 20 was 3.5 and that is the low end of normal....but normal. I do have a string bidy, question is....how long will this hold up???

Rpsemary- I cannot expres how wonderful you are....your words of advice and encouragement. Depending on what happens early next week I am definately considering Lahey or Dr. Wexner to review my cases. I am just waiting to here from CC and have this gastrograffin enema. I still for the life of me cannot believe he could look at me and the shape I was in and let me go home. Your case is so interesing and you are so knowledgable...your cruise sounds amazing and I wish I was well enough to come with you!!!

Jenise....I am still praying everday for your continued healing and now for your daugher as MRSA is a nast bug. I have been exposed to it so many times being a nurse and thankfully have not gotten it.....I hope your perinueum continues to improve. You are doing so well and I am so happy for you....really the cases like you make me cry. Not because I am jealous, but becuase i am so happy you have you have your lives back.

Hodaya and Tracy- I love you both so much and Tracy its ok to vent. I feel the way you do so many times especially after being sent from doctort to doctor to doctor just to have them tell me do this in a week or do that, but surgery is in your future. I hope they an figure something out with you. Hodaya I think you are doing not as well as all of us hoped and although your still doing ok you can barealy eat either and that is not fair. You deserve mor ethan that. Tracy, I hope biofeedback works for you...good to exhaust all options. You really have a 50/50 shot, but it has never been successdful for me.....but my anismus is severe. So he said temp ostomy for you??? I can understand that, but what if it somes back like mine. Did he go over chanves at all with you??? I was just curisou...not saying it would happen.

Judy- Praying this stent keeps working for you and the spasms ease.....I care so much about you and love you dearly. I cannot imagine what you go through all the time, but I hope you continue to do well. You make my issues seems so small after all you have gone through. Thinking of you always honney!!!!

Marisa- Hope you are doing ok sweetie...I did post my pictures of my belly on here (jenise did...i am too computer illiterate) so I hope you were able to see them. I hope you xontinue to do well....think of you so often...all of you. You are such an amazin g woman!!! I pray that everything is going well with you!!!

Happy New Year to all.....love you so much.

Lizzie

 

Hi Jenise,

Yes, All I needed was closure of the space of douglas and removal of right ovary. Colon was just fine as was everything else. VERY SAD! Hence the suit.
Glad you are doing well. Yes, this pelvic stuff is complex even for docs who are honestly trying to do the right thing like yours. Glad you are doing as well as you are.

Lizzie, Yes you will need the results of the gastrograffin enema next week. Sorry you felt so bad New Years, makes being sicker/injured even worse, having it be the holiday and everything supposed to be "normal and happy." I leave Thurs, but early in the week I hope to get in touch personally with my contact at Lahey to talk with her. I think she took time off so I left her emails about you and tel message. Just saying friend in severe trouble. Prior to my leaving I will let you know what they say and if they will review your recs I can prepay. I know what you mean, we are strong but for how long. I need to be honest with you, even if you come through this you may never regain your original stamina, I have not. However, you are about 20+ years younger than me so you may. So just be kind to yourself and don't expect 100%, but we'll settle for getting fixed and 90% right? Hang in.

Rosemary

Lizzie,

one of my reviewers said anything less than easy, fast rectal emptying IS anismus on a defecography no matter what the angles are of the anorectal angle or if the puborectalis muscle allows your rectum to straighten or not. There is something more complex beyond all this called anismus on constitutional base even if the puborectalis muscle FUNCTIONS OK. I'm still trying to wrap my head around this, but the main point is any difficulty with rectal emptying is a form of anismus. So you likley had it prior to total colectomy. I am learning sooo much from my reviewers. Right now just try to get fluids and rest and hang in until wed. At least you will get some info about your current situation at that time. Good luck. Are you working every day until Wed? Rosemary

Rosemary.. none of my doctors ever mentioned this on any of my 3 defecograms... but on all 3 I had trouble emptying and incomplete emptying because of the rectocele. On my 2nd test - they put more barium in, and they commented that most people empty faster than I did.... I might ask my doctor(s) about this too. Even though I am going now (thank goodness) I would not say it is "normal" or "easy" as a normal person. If you recall, I never ever told my hubby about my poo'ing issues, but now that it is all out in the open.. I keep asking him poo questions!! LOL.. he hates talking about it!! Specifically, I'm concerned that I still do have to bear down in order to empty (I'm just being as slow and gentle as possible) but he said he hardly ever has to bear down or push.

Lizzie, have you had a gastrografin enama before?  If not, please let me know how it goes.  I have to have one and have stressed myself out about the 4 tests that I have to have at the hospital.  My first test is on Monday and I have to go through central registration.  I'm lucky because my husband promised to come to all of the testing with me.  What is CC supposed to get back with you about?

 

Rosemary, I never had constipation until I had cystocele and rectocele surgery.  Something went wrong, because I was constipated within a week afterwards and could not have any bowel movements.  That is how I got to go to Cleveland Clinic.  Cleveland Clinic is outside of my insurance network, but my gynocologist got me down there, because he was afraid that I would sue him.  I had gotten an attorney, too, but never followed thru.

 

I stayed out until 10pm last night and slept until 9am this morning.  I'm not a night owl anymore and champagne went right to my head. 

 

I hope that you all had a wonderful New Year's Eve and day today!

 

butterfly
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Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10

Jenise,

Yah, I did not know that emptying time should be recorded on defecograms. My medmal atty who was a GYN for 30 years and was very familiar with defecograms could spot right away all the stuff that was not written on my defecogram report that should have been. He also spotted that it had been read by a Resident which I had not. He said that's a very poor incomplete report. I was floored! I felt like back in 2006 I should have come right out of that defecogram appointment with the report and gone right to my medmal atty of 2009. What a time warp!

So on my defecogram I expelled the contrast but apparently not a normal fast according to this expert radiology reviewer. In actual practice, every morning I went tons but in divided moves, some complete, some incomplete. To have a fast complete move I'd have to take a very brisk walk around the block, get the urge to go, race into the house and hit the toilet seat. Then poop just flew out of me with no effort whatso ever. I should have just kept whatever as of yet undiagnosed issue it was and bought a treadmill, put it right next to the bathroom, walked fast on the treadmill, jumped off it and onto the toilet and kept doing that until I was done, 2, 3 or 4 hours later. Would've gotten a lot of exercise every a.m. LOL

Even the loop of small intestine that fell into the Pouch of Douglas didn't do so until after I pooped out the defecogram contrast. So even that did not prevent rectal emptying.

I'm like a dog with a bone, I'm determined to find out what my issue was but my atty said I could win the case ten times over and still not have the answer. I think I will have to emotionally live with the unknown. But we shall see. maybe in "discovery" which comes after Tribunal, it may be found out what I really had.

BUT do you know what is REALLY WEIRD!!!!! Right after I had my ileostomy and while it was new, my colon which is still in me but is not in use, produced a ton of mucous. One morning after breakfast, I got this huge urge to "go" rectally. I could not wrap my brain around this at all, but the urge was so strong I sat on the toilet and tried to move it out. Of course, due to the 4 inches of scarred in colon and the rectum that is held a a right angle due to scarring of my puborectalis muscle (which worked fine prior to 2006 surgery), even with all that......I went for a fast walk around the block, flew into my house sat down on the toilet and about a cupful of mucous just flew out of my butt, just like the poop did before the 2006 disaster surgery.

I have NO CLUE how that happened! This is a brain twister! Rosemary

Wow! It's a posting fiesta! We're all posting at once. Great minds think alike, right?

Tracy,

Yeah, From what I'm gathering from my reviewers, anismus must be a catch-all. I can't push down either since the 2006 surgery due to scarring, you can't since your surgery, yet your angles are perfect indicating good puborectalis muscle function. So you're right anismus must be a generic term.

Peltz, WOW! You have a lot of knowledge about these internal pouches to share. Praying to God My ileostomy keeps working, I would not trade it in for any of those internal pouches for all the tea in China. After all I've been through and what poor Lizzie is going through now, I am a strong believer that if something is on the outside of us and is not working, the medical community can wrap their brain around it. For example, if I ever get a small bowel adhesion obstruction my bag will be empty and I will be throwing up the poop. ANY doc would be able to figure out I was having a small bowel obstruction. i would have to prove NOTHING! Seeing is believing. Sure hope I don't ever have to go through that and so far so good with the ostomy, but I totally agree with you as good advice to the others, something external is not the end of the world and made correctly is easy to pouch and to care for. It just takes time to adjust to body image, but it's better than dying young. That's my testimony as an ileostomate anyway.

Butterfly,

I had a gastrograffin enema after my disaster 2006 surgery to detect all the colon adhesion blockages and it was really a piece of cake. However, I had my colon, you do not. So they would be putting the gastrograffin into your small intestine. So I am not qualified to say how that will go.. But my own experience was A OK if that helps any.

Rosemary

Hey, this is Tracy (TDR), my ID does not work anymore. I typed in "forgot my log in" info and it didn't even recognize my email address. So, I am now answers4me. Or else I got banned??? WHat do you guys think happened to my TDR info????

Hi,

I just have a question. Prior to my original 2006 surgery I did call my state medical board to check out my 2 original surgeons. I was told they had no claims and no suits. I called again just to get a different rep and was told the same thing. At the time I did not know that medical malpractice suits were public information and could be read at the court house where they were filed, usually in the doctors' city. Now that I'm into all this research, I just googled "Finding law suits on doctors" which I did google back in 2006. All of a sudden most entries that come up tell about going to the doctors' local court house to read all their prior suits.

I am just doing a reality check. Did any (or all of you) know that a doc's suits were public information? and how to access them? Sure would have saved me had I known. Let me know, I'm curious to know if I was the only one out in left field. Rosemary

P.S. Due to all the HIPPA privacy laws and all I guess I just assumed law suits on docs would be kept privately by the attorneys whom the plaintiffs went to.

It finally let me log on to my screen name. HMMM< I think answers4me is a cooler screen name though.

Hello to everyone...............I feel like I know many of you because I have been reading your posts for a couple of days now. I have to admit that I am pretty scared about my upcoming surgery on Thursday, Jan. 7th an especially because Rosemary will be on vacation and not available!

I am suppose to have my large intestine removed and my small attached directly to my rectum on Thursday.

I am so inspired by all of you on here! You have all gone and most still going through so much! I am afraid I have not had enough testing done to be having this surgery since reading all of your posts.

On December 28th, my surgeon finally told me that I needed to have my colon removed due to CI. At first he just thought I need the lower half removed after reading the colonoscopy report which stated that I have fixed and tightened loops in the lower part of my colon. Apparently, it was a very difficult scope to do because of this according to the GI notes that my surgeon read to me. The GI briefly explained the fixed and tightened loops but never told me that instead of my colon going straight down to the rectum it is in the shape of a W before it reaches the rectum. The surgeon explained all of this to me. I have to say I don't care for the GI at all. He gives me the impression that he thinks my issues are all in my head. Well, not only does he give me this impression but from his notes he stated that I was abused by my father who was a Vietnam Vet. This is not true at all and I don't know where he came up with this information at. Yes, in my initial meeting with him we went through my parents health conditions and I did tell him that my Dad was a Vietnam Vet and that he and my mom divorced when I was 4 years old. I never told him I was abused because I certainly was not! Anyway this GI doctor just told me after the Colonoscopy that I should just continue the Amitiza. Well, I was not satisfied with his answer so I made the appt. with the surgeon. He had me do a sitz marker tests and then after reading the results said that he need to remove all of the colon because I had the markers throughout but most of them had moved to the lower left part of the colon before the rectum. He told me that if he only took out part of my colon I would be so upset with him because I would continue to have the severe constipation.

It has been such a long road to get here to this point of surgery being scheduled. I have even traveled to Mayo in MN for them to basically tell me to wait until I fully obstruct before something would be done. They believed it was due to the adhesions from previous abdominal surgeries that I was distended as if I was 7 months pregnant. I had people asking me, including those in the medical field, when my due date was. This was extremely irritating because I had to have a hysterectomy prior to being able to conceive. (That's another long story that may be part of this whole problem)

Anyway, I have had the small bowel follow through test, but I have not had any of the rectal testing that you all mention. I don't think I have any problem with the rectum, it seems as though the poop gets stuck before it even gets to the rectum. I think that is why enemas have never worked for me.

I know I have left a lot out, but it is late and I wanted to send this before Rosemary leaves. I would love input from any of you regarding my situation.

Thanks so much for all of your help!

Kristen

Rosemary, I am from Florida and we can see any lawsuits against doctors by looking on the State of Florida Department of Health website.

butterfly
---------------------------------------------------
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10