TOTAL COLECTOMY PART 30 page 12

Hi Hoping4anend and Val,

Thanks for your well wishes. I just GOTTA stay as well as I am and get these 2 original surgeons out of the OR. They have multiple other victims. The 10 or so suits is just the ones who found an atty. I am one of the few only liviing plaintiffs (so far anyway). One atty I contacted enroute to finding my current atty said he gets approached by 3-5 women every 3-5 years about life threatening complications by these 2 surgeons. But he cannot take the cases that involve both the GYN and colorectal surgeon because this particular colorectal surgeon IS his medical expert. AIN'T that just something. But he does take cases against the GYN doc if he is to be sued on his own.

The state med board covers for these 2 like you wouldn't believe. I need to blow the whistle after my case is done. Takes 3-5 years. LORD! I need to make this part of the state safe for other women. That is something about the doc you mention taking uteruses out just because he feels like it. It's dollars of income per procedure, that's what my 2 original docs were and still are into. They do 2 of these mutli-procedures per WEEK. That's 160 in 2 years of maiming women beyond any thing they would consent to and beyond what they need. The original GYN also is among 100 "top teaching docs" of the year. I think he does unneeded surgery to TEACH residents. I really wonder if the RESIDENT does the actual surgery.


Yes, the doc who saved me (the best that could be done is a jewel! ) I send him post cards from all my trips. He is an older man in medicine for all the right reasons who dared to step over the politics of docs covering eachothers butts to save a life. He and I are really hoping I stay OK, but it's one day at a time. My mom who is 90 was just soooooo sad as the other docs (all 10 others were just going to let me die.) I do not know how I persevered as I did this hunting for a doc to save me while not being able to eat at all for 7 months. I was so exhuausted and was wasting. I have a pic and I looked like a POW. The place that saved me ran a story on me (with my permission) and published some of my travel pics. I am one of their "complex reoperation" success stories. I sure hope I stay a success, but in the meantime, I have my "mission" to do.

My friends tell me that from a spiritual point of view, I was "selected" to be the one to bring these 2 dangerous original docs down for the common good. The anatomy I had to learn took me 2 years. Then I had to learn enough law to "sell" my case to an atty with this 20 minute presentation. He is one of America's top atty's in Newsweek magazine and he is VERY selective about his cases. I told him, if anything happens to me and GOD FORBID, I succumb, roll this as a wrongful death suit. I did make my wishes known.

But, my hope is that I stay "well" and see this through, travel more, and get to make some sort of reform on a grand scale. At least with my own state medical board. THe politics and the cover up's I've found are absolutely frightening.

Rosemary

PS Call the radiology doc (not the radiology technicians or even your own surgeon) to check for the prep for those tests. All this was so long ago I don't remember to be honest, but I learned it is the radiology doc who really knows the most about the preps needed for each test.

PPSS The defecogram where the loop of small intestine descending at the push phase of the test was read who accidentally identified it as my sigmoid colon that started all this trouble for me was a resident. The test was not co-signed by her teacher. At the bottom of each report that is done by a resident, there should be their name and an (R) and then the teaching docs name with a (T). I did not know all this at the time and had no clue that only a resident had read or in my case mis-read my defecogram. Almost costing me my life and still may. Have these tests done several times by different places; compare results, you might just be surprised.

Also for defecation issues the whole battery of tests really consists of Anorectal manometry, defecograms, pudental nerve terminal latency, surface, EMG, colonoscopy, and other tests that see if nerves or muscles are involved. BE sure your testing is comprehensive. Structural issues ma¥ only be the tip of the ice berg. THis whole pooping thing is soooooo much more complex than I ever knew not having been to med school.

Rosemary...You have DEFINATELY done your research! I bet it was so redundant and time consuming to learn all the while being interesting too! I will definately call the radiologist and ask. I don't want to drive 2 hours away and be sent home because of some elses mistake. I am really..pardon the pun...anal about stuff like this. I am one of those people who believe knowledge is power and I try to find everything out before doing anything. My husband makes fun of me for googling and researching so much but hey at least I always know what to expect. I know that no amount of money will make things right for you but it certainly will help. I hope those suckers get everything they have coming to them. It is sad to me...after working in hospitals...to see how much people actually trust doctors 100% and take everything they say at face value. At least I consider myself lucky because just about everyone I talk to or interact with is in the medical field and my best friend is a general surgeon.

Leslie...LOL about food. I love me some food. I can't wait for this all to be over so I can go back to eating what I want and when I want and not feeling sick so much. I can handle the not going to the bathroom part it is the cramping that I can't stand. Did you ever get cramping? I get it where I am trying to poop and throwing up at the same time. It is crazy. My husband has had to miss work in the past to stay with the kids because there are times I can't leave the bathroom for hours.

answers4me...I am going to call for sure. Everything I read says that enemas are standard. Thank you so much.

Shannon

Leslie...I really am not sure what causes the cramping to be so bad. The doc knows about it. At first I think he thought I could have Hirschspungs and I am still not sure if he still thinks that or not. He seemed to think that with as big as my sigmoid is that it had to have started at birth. He said my colon isn't just long it is one of the longest he has ever seen. We will see after the tests. When the cramping gets so bad that I am vomiting, thats when I REALLY can't stand all this. I am not sure if gas gets trapped. I am assuming it does though because I am not nearly passing wind like I used to. When I am sitting on the toilet trying to go sometimes nothing even comes out. Just cramping which makes me want to push but thats it. Once I get to the "cramp state" which is a couple times a week, it lasts for several hours till sometimes days. I can be in the middle of a conversation and feel all of a sudden like I am going to throw up. Once my husband and I went out for my birthday and we were going to go to the boats to do some gambling and we were having to search for bathrooms on the way because I was getting so sick. I just hate the way it interfers in my life. My biggest complaint of all though is the "ball" type sensation I have in my rectum. I feel as though it is too long and I have a hard time sitting. Because of this I have to sit one or the other butt cheek and my hips are really taking a toll now. I will even live with the cramping and not going like a normal person if they get rid of that part. It is interesting to think that possibly gas could be factoring in. I am just not sure anymore. Thank you so much for talking to me. It really helps to be able to say anything about poop and no one cares or is grossed out.

Shannon

answers4me....First of all HAPPY BIRTHDAY!!!!!!!!!!!!!!!!!!! Thanks for asking about me. I am having the defecography and anorectal mamometry on friday. I know I don't have a rectocele because that problem as well as my urethra getting slung was already fixed. All this in turn has made my pooping problems much more severe so I am guessing that I have a sigmoidocele. We will see though.

Again HAPPY BIRTHDAY.

Sorry about the day you had yesterday. I make sure that 90% of the time I wear comfy pants. I can't stand jeans or anything else touching my stomach. I hope that you are feeling better and are able to enjoy your day.....You deserve to have a nice B-day.

Shannon

Happy belated birthday Answers! So sorry I missed it but couldn't get my laptop working until this morning - had to charge it overnight. Sorry you had such a bad day and hope that you are feeling better now. Were you able to go to your birthday lunch?

(((hugs)))

val

Marisa

    OH no, this should have been a breeze..I am so sorry to hear that.  Dang girl, have you not had enough stuff....I feel bad mine was so easy...Hope the infection goes away and your on the mend soon.  Praying for you..

Leslie

Rosemary....I am SO SO SO sorry if you took my post the wrong way. I wasn't speaking of you at all if that was the impression I gave you. I meant the world is full of people that think that docs know everything without looking into anything. I saw that a lot at the hospital. Several times with our kids even...if we didn't know better, the outcome wouldn't have been the same. That was all I was saying. I meant that I was VERY impressed that you took so much of your own life into your own hands by doing all the research. Never meant to upset you at all. That truly was not my intention.

Shannon

Hi Rosemary, I don't post often but I do a lot of reading on this site. I am so glad that you had such a good time on your cruise! What was your favorite thing about it? I am always interested in reading your posts; you are a very smart and determined lady! You are also very supportive of others and give good advice. I hope that your court case starts going better; it sounds like there have been some problems. There is something that confuses me about some of your comments, maybe you can explain. You seem like you do quite well with your Ostomy, I mean I was very impressed that you could handle being on a 3 month trip (Cruise). You said you did many things on your cruise and spent a lot of time dancing! This is all great and I am so happy for you. Other times though, you say you just hope you will be able to maintain your health long enough to finish your court case. I am concerned for you; does having an Ostomy really put you in danger of dying? I know that sounds like such a harsh question but you seem to be able to talk honestly about almost everything. I ask out of my concern for you and also, I may be facing the decision to move from living with the results of my subtotal colectomy to having an Ostomy. How do you feel, in general? What is the hardest thing about living with an Ostomy? Thanks Rosemary for how you try to help everyone who posts on this site. I hope you are having a good night!

Gilda

Lizzie, do you feel stiff? I just watched mystery diagnoses and the lady had EXTREME pain and was very stiff and could barely walk at times. She was dx with stiff man's syndrome???? I know it seems crazy, but I just saw it today. LOL

Rosemary, finally the miralax worked. I took 3/4 of the bottle. I am not sure what happened and why it wasn't working...but, I am soooooo glad it finally did its job. I am sure I am not empty, but atleast some of the poop is finally coming out. UGH

I see my doctor Fri and I have my fingers crossed! Hoping he can perform a miracle on me.

Hi Tracy, Glad the miralax kicked in for you. I hope your doc sets a plan and you can proceed. Delays like the Miralax not working as it did isn't a good sign. Plus all the data you already have. This might be the summer for you to take action. You have really done your homework and done good doctor consulting.

Hi Gilda, no I am not afraid of dying from having an ostomy. My main fear is of adhesion (scar tissue) reobstruction of my small intestine. The ostomy itself is very manageable. The reason I have big fear of adhesion reobstruction is that the 2006 original surgery created severely dense scar tissue on my small intestine and caused a year of repeated small bowel obstructions, hospitalizations, and NG tubes. When I finally could get help in 2007, my ileo surgeon had to remove tons of scar tissue and apply an adhesion barrier in the hopes that the new scar tissue would not grow in as densely. There were some adhesions he simply couldn't get. He did say that you can be practically encased in adhesions and be OK IF the adhesions are not in the wrong place. AND I have been fine since the adhesion lysis (cutting) and ileostomy surgery. However, the fear remains. BUT when I'm out traveling, I am in the company of others and am enjoying their company, the side trips, and the dancing. When I am home, I'm just there alone with fear. No job as my school system retired me because I was out of commission for a year and a half and because I do face the POSSIBILITY of small bowel re-obstruction.

So my situation is a bit different from people who simply have an ostomy. An ostomy in and of itself is not cause to fear dying. The reason the 2006 original surgery caused so much scar tissue is that the original surgeons did 7 (most unneeded and unconsented) procedures (like I found out in medical review of my case). 7 open procedures would cause abundant scarring. Hence, a factor in my case. Also since the time I was unable to eat due to all these small bowel obstructions prior to the removal of the small bowel adhesions, I have had a real lightheaded/breathless feeling. I was unable to eat anything more than jello and chicken broth and Enlive drink for almost a year. In that time the lightheadedness and sort of breathless feeling developed. Even though thankfully I have been able to eat since the Aug. 2007 surgery, the lightheadedness and feeling of breathlessness has not totally gone. I'm not really out of breath, just feel breathless. My electrolytes and other blood labs check out fine. I did dehydrate one day on the cruise and did need an IV, but that can just happen to ileostomates due to no longer having the absorption capacity of the colon and being in a hot climate. Nobody has been able to figure out why the lightheadness and breathless feeling continues. So this is another factor not typical of other ostomates.

Lizzie, thanks for the effort it must have taken you to post. I cannot imagine what else this could be but RA, but HOPEFULLY it will be not that but something that can be cured with a one time medicine so you can get back to just dealing with the k pouch and all you are going through with that. You will have a book to write at the end of all this when you are well. Maybe we should collaborate on a book?

Continuing to wish you well and sending you prayers.

Rosemary

Hi Rosemary & Lizzie,

It was good to hear from both of you today! Lizzie, I now live in San Diego but I grew up in Grand Rapids (S.E. part) and still go home most summers to see my parents. I graduated from Ottawa Hills High School and worked at what was Blodgett Hospital (I think it is now Spectrum Health). If I go back to G.R. this summer maybe we can get together. I really hope that you start to feel better soon! It is so not fair what you have been thru. I guess I am like Rosemary in being the "Mother Hen." I am 57 so a lot older than you and I just hate seeing a young person have to put their life on hold to deal with medical problems (an understatement, I know). Anyway, hang in there girl and know that you have many people praying for you each and every day!
Rosemary, thank you so much for explaining that the Ostomy isn't so bad, it is the fear of obstructions and your past history that keeps you "edgy." Now I understand your condition better and I don't feel as scared to get an Ostomy if that is what is in store for me. I still hope that my condition will improve and I won't have to have anymore surgery but I don't know . . . somedays are pretty good and others - terrible. Friday marks the 1 yr. anniversary of my sub-total colectomy with ileo-rectal anastamosis. I was hoping things would be better by the one yr. mark but I do know that I have had some improvement in my health status overall. I always have to take 1 or 2 Vicodins and 3 Lomotils every night around 7 or 8 p.m. so I can sleep w/o having to get up a lot to use the BR. Now, I am feeling very spacy, very "out-of-it" so i guess I had better go to bed. I will talk to everyone again soon.

Gilda

quick update:

Saw RA doctor today and starting me on steroids and have to have testing of blood and throat culture. I was i er last nite....my tube would not go in and it took 10  mg dilaudid and 15 mg valium again. The RA doc is not sure whats causing th pain. I apiked a fever tonight of 102.5 and belly is all swollen and having drainage from stoma...clear/blood but not suree now if i have an infection. Just though I would update.

Gilda, I would loveo to see you....I love in heritage hill, the historic distric in a condo we renovated. I wonder if you know my dad....he taught at ottawa...ed shalhoup.....he is finally retiring this yr. from union highschool. 57 is not old, but i thank you for all your prayers.....

miss you all.

lizzie