TOTAL COLECTOMY PART 27

Lizzie, best wishes today when you see your counselor!

I also have Faith, I have to! When I think of all the tests, and the results and interpretations vary... some things are just trial and error I think. 5 years ago I had foot surgery, and part of it was on my 2nd long toe bone - as I always felt like I was walking on a rock. It was far worse after the surgery, and I so regretted having it done, I went to another doctor, he tried a procedure , it didn't work, and I went back to original doctor, and he did another surgery - and thank goodness - it worked! What I'm trying to say is sometimes "repair" surgeries aren't always an exact science.. I mean, if we were talking about removing an just an appendix.. we'd all be done and over with. Anyway, I think we just all need to be as informed as we can with our treatment and question the tests.

So, conversation with the surgeon... is still the mesh issue! It complicates the whole procedure and it's like super glue, and damage unsticking it would cause me to have a ostomy. He may get inside and find colon and small bowels stuck to this mesh! Chances for damage are elevated... TRACY, has any of your doctors been concerned about the mesh? My doctor presented my case before a whole team of surgeons, and the mesh is an issue! I had my scaral colpopexy, and can't say I regret it. I did my homework, knew there are issues of mesh erosion, but I guess the likelihood of having bowel surgery after the colpopexy isn't all that common. I'm really interested if your doctors feel the same way. FYI.. my surgeon is the professor of a large, teaching hospital. He's training was done in top schools, including Clevland Clinic. I do feel confident in my doctor, it's just this mesh issue is a little scary to be going in with.

Hodaya,
Thanks for your support. I am working to develop a faith. A friend of mine who is very religious said that I have been selected for a mission to put a stop to this bad medical practice being done by the 2 original surgeons I encountered in 2006. Their past suits are all about patients on whom they seem to have done this cookie-cutter like surgery. The surgical pattern is always rectosigmoid resection, cystocele repair, vaginal vault resuspension, removal of both ovaries, rectocele repair, all the stuff that was done to me. None of the surgeries seem to vary. All those women could not have had identical prolapses all in need of repair all at the same time. The nurses on the floor at their hospital referred to my and one other patient's surgery as "THE PROJECT." THis other woman had had identical procedures done as mine. She rattled off 7 procedures she had done. At the time I knew I only consented to 4. So while in the hospital I got my op report and low and behold they'd done the same 7 to me. That and the fact that I was severely bruised from rib cage to my knees made me suspect something. Mine and the other suits also cite these docs for no follow-up to complications. The lucky women survived and got bags, the unlucky ones died of ruptures at the rectosigmoid anastomosis and their survivors filed suit on their behalf. After my suit and the state Medical Board processes my complaint, I need to see what I can do on a system wide basis. Maybe I was the one selected through some fate as I figured out what happened, had the research skills to find all of their "priors" and to understand the anatomy. Then to happen upon this site, all of you here, and learn from you all the tests that should have been done that were not. The patient in the hospital same time as I had only had the dynamic MRI and the defecogram too. No anorectal manometry, no transit test, no EMG, no pudental nerve tests. all real simple basic tests needed for a complete workup. If I can make things safer for future patients I guess I need to do that. It's a drive I have that I can't squalsh. Taking it one legal step at a time and going to be very careful how I procede in dealing with the system wide issue.

Lizzie, I sure hope your anismus is not coming back. BUT relaxation is key here as "non-relaxation of the puborectalis muscle" CAN be brought on by physical stress. So I hope your counselor is good and can help you relax. Hypnosis is also good if you find a reputable hypnotherapist. I'm not saying you will bring back your anismus or that it is "all in the mind" as it is not, but there is some weird mind-body-muscle connection that I really don't think any of the medical people have even figured out yet. So, the more relaxed you stay, the better for that puborectalis muscle. (easier said than done.) Good Luck. ALso just as a safety net thing to keep in the very back of your mind, if a stoma is constructed correctly, and comes out enough to make a little faucet type configuration where poop drops directly into the bag and not onto the skin like a recessed stoma, it is not hard to manage. You had a bad experience, but my stoma is really easy to care for. If all stays well, I'm heading off to South AMerica on a cruise Jan. 7 bag and all; swim, eat (carefully) , dance, tour and so on. SO , life with a bag can be full and possible. At the end of all this, I'm even thinking of going to law school to help other medmal victims. So nothing is out of the question. Praying for you. Rosemary

Hodaya, yes - he did say a temp one, thank goodness! I just have to have faith that they all agree on what and how to do things with this mesh issue. I do feel I'll be fine recovering from my surgery, but I'm not so sure it will completely solve my issue.. but I sure am trying to think positive! All and all the studies do show that most people are happy they had the surgery. As far as the quit smoking thing.. let me tell ya, it was hard so I totally understand the struggle smokers have quitting! I was more motivated because I was pregnant.. so that helped!

Anyone else here have flat, flat stools?

Rosemary, there is no doubt that there are a few rotten apples of doctors out there... and it's too bad you hadn't found this site before hand. I think I mentioned my money hungry gyn.. who wanted to do a hysterectomy, remove my ovaries and such. She did keep telling me my uterus was enlarged, and really didn't have a good reason to remove my ovaries - only reason was that I was 47.. and I wouldn't need them. ALL the new studies clearly point out that ovaries are beneficial even after menopause. Then her office called me several times to do the surgery - putting pressure on my when I hadn't yet decided. Glad I went else where, and did decide on a hysterectomy for the fact that it was prolapsed, and I was fine with it out, however, after it was out - it was a very normal size uterus, not severally enlarged like she insisted. You know, there is a website where you can check out your doctors and rate them.. I hope you have! I know I sure rated her in a negative manner. Come to find out - I wasn't the only one either with the same complaints! I do think that all and all doctors are good and decent, but for sure there are some only interested in procedures to make them the biggest buck!

Rosemary, you sure have your hands full.. i'm sorry about your mom, hope she gets better soon. thinking of you.

Hi all,

I am feeling somewhat better with each day. I have even made two outings two days in a row. My husband took me to Walgreens to get some Calmoseptine. Thanks Janie for telling me about it. It is really better that all the other stuff I have tried. They do have to special order it but it arrives in one day. I also went to the Verizon store to get a new phone. That's always nice.

Anyway I am eating better. I have found that bread products are a good choice for me. Pancakes are wonderful and cause no cramping. Also English muffins are great. Prior to surgery I was unable to eat Pancakes because I would blow up like a toad. So I can see the benefits of the surgery already. Now I just need to take it slow and gain some weight so I can get my strength back. I'm still weak and get head rushes when going from sitting to standing but things should get better. I still go to the bathroom 10-15 times a day but I am in complete control and can hold it when I have to.

Jen

Jen, so happy to hear you're doing o.k and making progress! that's such woderful news, keep it going, honey.... (: Jenise, dear, these 28 days will fly away very quickly and soon enough it'll be your turn to feel so much better!!

it'll happen for you, Jenise. one thing your dr is sure of is that you need surgery.. maybe the details were more complicated to him, and he has hard time deciding.... gosh... hopefully this time it's a go! good luck teusday!

Checking in,,

Not having such a good day.....i ate way too much to try and be normal and feel sick and bloated, but better after MOM. I just feel so alone again today and this sittighome is driving me crazy. I am going to attemp to have a girls night for a few cocktails tomorrow. I still am not sleeping and not sure if I told you all the meds I am on cause constipation.....isnt that wonderful.

Anyways, I am glad to hear some of you are well, esp Jen...15 more lbs, you can do it!!!!

Rosemary, Hodaya, Amey, Christy, Jenise and anyone I am forgetting. Love you all and praying for you.......I feel so ok sometimes and not others. I have too much time on my hands and I am not going back to work till the first of the year.....WOW! I think I am going to go crazy. I have to get my workbook and read the first two chapter for my counseling.....

Amyways,

Lizzie

Jenise,

Good luck with that mesh issue. ONe reason I went with the surgeons I did was that they did not use mesh but used my own body tissues. As all turned out they did unneeded surgery which landed me in a mess, but the other surgeons who also opined on the defecogram read in error by the radiologists, also said I needed sigmoid removed, but they said they used mesh. Then in the next breath they told me that the colon and small intestine can adhere to the mesh and cause trouble. So I went with the best decision I could make at the time not knowing they were all wrong.

I truly believe we are all in a catch-22 even with docs who are on the up and up, radiologists who do read their scans correctly, and docs with all the best intensions, the docs you all seem to have. I pray for us all. I think it's like you said, so much of medicine is trial and error, even with honest accurately diagnosing docs. Good luck with your surgery. Good luck to all others trying to make surgical decisions. It's like a friend told me, you did the best you could with the information you were given at the time. I guess that's a good mantra for all of us. Rosemary

Rosemary, yes - that is what they told me about the mesh too. But like your friend said, you did make the best decision you could at the time. It's a horrific learning lesson that you had to go through, but it will surely help others to realize that we must question things and get second opinions on such big procedures. I'm hopeful that he'll get in there and find that the mesh hasn't stuck to anything it wasn't suppose to. I'm not a radiologist, but there is no doubt from looking at my images that my transverse is redundant and has prolapsed, and the sigmoid is redundant and very twisted.. so going in to surgery, I feel hopeful!

Jen, I am exercising 7 days a week, and I'm able to 'run' 1 mile and I fast walk 2 more. I do hope it helps my recovery, but my other surgery is still so fresh in my mind (7.5 months ago) and man.. I remember how much that one zapped me of all my energy. It does get boring, but since I don't work outside the home, it probably won't be as boring for me! I've learned to relax and enjoy reading or TV! Sounds like you are doing great for where you are at in your surgery. How are your bowels doing? Any trouble at all?

Lizzie, how did your session go with the counselor?

Hodaya, thanks for the well wishes! I'm ready to just move forward with this and get it over with.

Janie, everything still okay with the MiraLax?

Hope everyone else is doing well and will check in!

Jenise,

My bowels are doing great so far. It really all depends on what I eat. If I eat things like break products then I wont' have a bowel movement for several hours after eating. If I drink an Ensure or eat something like soup then I will usually be going to the bathroom in an hour or two. I don't take any laxatives or pain meds. I do take tylenol pm to help me sleep and my wellbutrin. I have found that getting comfortable in bed is an issue. I can't describe it but its not incision pain but more like a pressure pain when I lay in certain positions. I absolutely can't lie flat on my back. I don't know what that is all about.

I work out of my home also but three days a week I travel to child care centers to inspect them so even though I'm based at home I am still used to getting out. So this staying here all the time with nothing to do makes me crazy. I have become a tv junkie. I have DVR system so I tape lots of shows. I used to read a lot but I usually did all my reading in the bathroom when I would spend countless hours trying to go..lol. So now I associate that with a bad experience, and havent read anything since surgery. I know that sounds completely crazy.

Your excerise program will greatly benefit you. Sounds like you are on the right track.

Jen