TOTAL COLECTOMY PART 27

Doug, thanks so much for the update! Jen sounds like she is is good hands! Glad she is up and walking around, and hope she'll soon be home. That's when she'll really need your help! It will be weeks/months before she gets her energy back. Please tell Jen we are thinking of her!

Lizzie ((HUGS))

Marisa, most rectoceles are easily diagnosed by physical exams, however, the defecograms do show how large they are, and in Hodaya & y case - the posteriors one are only seen on a a defecogram. Stooll gets stuck, and women with a retaining rectocele usually must have to "splint" to get the stool out.

Hodaya, what does the doctors think caused your rectal prolapse? From everything I read, it is women who suffer the most from this, but childbirth is a big factor. I know for sure that my birth injury caused all my pelvic damage, and the years on constipation and straining did not help... just curious! I' am very anxious to hear from the surgeon... not a word yet.

Sinda,

Thank you for your kind words. I am at a low place right now and trying to fight to the top. I hope my appetite comes back someday. My Bm's are better after being off narcotics, about six a day I guess, but not a lot at a time. I am not sure if this is good they slowed down so quickly or not. I am just trying to get through a day at a time right now which can seem like an eternity. I am supposed to go back to work Dec. 2 and I just hope this is enough time for me to feel normal. I take care of cancer pts aand they need my full attention. Still battling the flu.....its been over a week now and not fun, but running rampant in Michigan.

To everyone else, thanks for your support. Hope you are all well.

Lizzie

Good news on Jen so far Rosemary

Doug, thanks for the update on Jen! It definitely is a day by day thing.... hope each day brings her to a place of feeling better!

Lizzie, our state is sick too.. everyone seems to have something. No doubt - surgery and the flu is a big whammy! Sure hope brighter days are ahead for you.

Hodaya, yes - my childbirth injury made it all prolapse immediately. I was in bad shape (couldn't even sit for flat on my bottom for 8+ months, and no sex with hubby - for over a year!) Never thought things would get better - I throbbed in that area. However, because I was still young and my hormones regulated, things did improve enough so that I just didn't deal with issues. Actually - my doctor never told me I was prolapsed.. it was only years later I found out there was a name to my condition! I do think the last few years of straining and constipation made things worse.. and I think a redundant colon is often due because of chronic constipation.. but still no word from my doctors! My mother thinks I should call tomorrow... I don't know if I should!

Janie, actually from what I have read - the size of a rectocele doesn't actually mean the symptoms will go along with the size. Meaning you could have a large, and not have many symptoms, or you could have a small and have more symptom. I have read where women are in pain and suffer a great amount of pressure. Honestly, my previous one was very large, (this one is moderate... but I don't suffer from pain or a lot of pressure. I don't feel like my rectum is full all the time.. I mostly feel like it is still full after I go.. or fora few hoursbefore I go and then it goes away. The Miralax doesn't seem to work well any longer for me.. but my one tool that still helps the most is the fleet liquid - it is the only thing that will help me have a BM. However - I never feel I go enough, and that my colon is still full. I guess I just have learned not to feel the sensation unless I think about it! GOOD LUCK tomorrow!

Janie, I didn't realize you had a cystocele too.. and yes, I had a cystocele as well. I had a total pelvic floor prolapse, (bladder, vagina, uterus, rectum) the surgery I had 7 months ago was for that - (a sacral colpopexy plus rectopexy and bladder sling). My bladder was coming out too, but is great now.. no issues there at all and I did have a lot of issue before surgery. (that's when I finally went to the doctor - when things started to come out! LOL) Through all my research on prolapses.. big babies and forceps do cause a lot of these (most). Chances are we have some nerve damage. How different is it now since you had the colectomy? Have they ever had you tested for rectal nerve damage? I can tell you prune juice never worked for me - I could drink a jug and it just wouldn't work! I recently tried MOM and that is working good when I need it - I just have to take more then a normal person. Fleet enema's - they hardly work.. I'm thankful something works! I'd be in big trouble without those little fleets! LOL

Doug Send Jen our best!! We are all thinking and praying for her! She is lucky to have a supportive husband like yourself! I know I could not do this if it weren't for my husband!! He often feels so helpless. He wishes he could make things better for me. I tell him that his love and support is enough and that it means the world to me!! It is not easy for you guys either. I know my husband misses out on a lot and has to do a lot more around the house and with the kids because I'm sick . God bless him!!!

Lizzie I'm so sorry you are fighting the flu on top of everything else! I hope you feel better soon! Praying and thinking about you!!!

Marisa Continuing to pray for you and your mom!

Rosemary I did try questioning the other doctors, that I saw after the surgery, about the surgery causing me these problems, but they all avoided my inquiries. Noone would confirm that the surgery caused the problem. One said let's not look back let's focus on getting you better. He said I had Levator Ani Syndrome and that Electric Galvanized Stimulation would make it better. But when I did go down to the Mayo, they said that that treatment actually made it worse. Here in Canada it is very hard to sue doctors. When I finally did see a Lawyer, after going to the Mayo, he informed me that we would need medical confirmation that the surgery caused the problem. Plus, he said there is only a window of two years to sue and I was already 23 months post surgery. I just decided to drop it, move on, and focus my energy on getting better. Now that it is going on four years, I really wish I would have pursued the suing thing!!! I have little faith in the medical system myself. Especially here where I live in Canada and especially for something rare like anismus. Well rare here, anyway! I have yet to find a specialist who knows anything about it! Plus this is not my first surgery that has been botched by a doctor. Back in 1988, I had knee surgery and had major problems. I had to have the surgery redone by another doctor. A couple of years later the college of Physicians and Surgeons found that the doctor who caused the problems had obtained his liscense illegally. It was in the news! Unfortunately, he had escaped back to Saudi Arabia before they could charge him!! Then in 1995, the doctor left parts of my placenta in after I delivered my son. I ended up being rushed back to the hospital a couple of weeks later because I was hemmoraging. They did an emergency D & C. But they perferated my uterus during the procedure!! I found that out a month later after having a lot of problems. I ended back in the hospital with a severe infection. The only good thing about that is that they found I had a tumor on my right ovary!!! Needless to say, although I hate suffering the way I do now, I'm very hesitant to have any surgery for fear of things being made worse!

Janie Good luck with seeing your surgeon! I hope he gives you some answers!

Jenise Good for you!! Do not let that doctor make you feel bad!!! I find that some doctors when they do not know how to fix you they put the blame back on you. Instead of admitting they do not know what to do! The doctor here, who kept insisting that I continue the Electric Galvanized Stimulation therapy, despite the fact it wasn't improving anything and I felt it was causing me more pain, made me feel like I had some sort of mental illness!! It wasn't until I went to the Mayo and they confirmed that it was the wrong treatment. The problem wasn't me it was the treatment and that doctor!!! It was great to hear!! My mom was with me at the Mayo. She too, despite being very supportive, was starting to wonder if the problem was me. Heck, even I was starting to think maybe I was nuts!! When the doctor told us that, I turned to my mom and said "I told you!!" She just smiled - relieved I wasn't crazy! I love her!!!

Tracy Thinking of you as always!! I'll try to email you as soon as I have another free moment to get to the computer! Take care!!!

Hodaya isn't butt burn the worst!! Hang in there girl!!!

Love you all!!

Janice 

P.S. I go to see my doctor tomorrow. I'm going to talk to him about seeing a specialist again, to look into this surgery stuff. I'm very hesitant but I think I need to learn more about it!!

Hi F1ghter (Janice),

Wow! Thanks for sharing your medical-legal "events" shall we call them. It took me 13 months to find a doc to over-ride the legal-medical-political wall (where docs protect eachother) in order to find one who knew what to do and was willing to do it to save my life. By then I was down 25 lbs unable to eat and unable to defecate due to totally scarred in rectum and small intestine.

Then it took me the next 2 years to get all my records, have DVD's of defecograms reviewed by other radiologists, find out I didn't have the sigmoidocele in the first place or the cystocele, vaginal prolapse, or many of those other cele's and prolapses they operated for, many beyond consent. When I found their 8 past law suits (unreported to me by the Mass Med Board when I initially checked them out PRIOR to surgery) I found that they did these overly invasive 7 procedure open surgeries on many of those who sued. Many were for loss of bodily function and deaths from ignored problems with the sigmoid resection anastomosis. A pattern began to appear. I wonder if all these women really had all these multi prolapses like I didn't. I've never been pregnant, never delivered, and always thin so it made sense I didn't have them. The consent form does not come close to the op report which is 12 pages long. My insurance company said they claimed I had a bowel blockage and had to do emergency surgery. This was an out and out lie. Then there's the whole thing of the colorectal surgeon leaving me with my colon narrowed in to a 3 millimeter diameter unable to pass stool and actually faxing me hand written letters to my home fax machine saying "I will do nothing about your stricture." IVE GOT THE GUY...BIG TIME! DID HE GIVE ME EVIDENCE OR WHAT???

It was very interesting to find out that they tossed the erroneous defecogram report and DVD upon which they based my surgery. Looking at my file at their office, there is nothing in there that indicates I needed any surgery except for removal of my right ovary for the large benign cyst (known to be benign prior to surgery and found benign in surgery.) This is called spoliation of evidence.....logically would be spoilation of evidence, but it's not. I'm learning all these legal terms.

The last challenge was finding a medmal attorney who knew the anatomy. Most medmal atty's don't have MD degrees. FINALLY only 30 days prior to my 3-year statute of limitations I found one who had been a gyn surgeon for 30 years then went to law school and is now a very successful plaintiff medmal atty. I had to give him a case presentation; I felt like I was taking my comp tests for my Masters Degree! It was intense, but I had all my ducks in a row. His assistant said that was one of the best, well supported presentations he's ever seen. (I had all relevant xrays, diagrams, reviewers reports.) I'd been a researcher and a teacher for my 17 year career that got cut short, so I was familiar with making presentations. From there it's history, we are rolling.

I've had some medical mishaps happen to me a long time ago that were serious and could have been sued for, but I ended up being 99% over the issue physically so I didn't even think about it. I'm not litigious by nature, but misdiagnosis, wrong surgery, surgery in excess of consent, no follow up to complications, almost losing my life, losing bodily function, now being predisposed to possible future issues, and losing my professional career and 15 years of projected income and bennies made me really go to work on this.

BUT the more I found out the worse it made me feel personally. But as friends have pointed out, no patient would come out of a leading New England GYN hospital with a defecogram and send it to multiple pelvic radiologists and a forensics company. Patients trust. And hence the suit. My original surgeons clearly had their own agendas with a history that is not typical of most. I would LOVE to somehow STOP them from hurting other women. They do 2 of these multi-procedures per week. Many atty's I approached had actually heard of these docs because other patients approached them for legal help. But the atty's said they do so much, unless you've been to med school yourself you don't understand the anatomy.

But having my life saved, no matter how it had to be done, also gave me the view that life needs to be lived in the now! Soooooo, I've been on extensive multiple cruises to foreign countries and have more planned. Tomorrow I'm going for a hot air balloon ride. As scared as I am of having future small bowel adhesion obstructions, I figure why sit around and wait for it. I've been OK for 2+ years now, so, here's hoping I stay OK for many more. If I stay OK, I want to somehow turn this around so I can help others such as patient advocacy work??

My case was not typical at all. It sounds like you all have doctors who are basically trying to the best of their individual abilities to diagnose your issues. Typical of 99% of docs is to blame the patient if they don't know the answer. In my travels to 11 top US surgeons to get my life saved from all my damage, I got blamed a WHOLE LOT! I got a double whammy......not only did most docs not understand the damages, but docs don't like to admit there's a problem that is caused by another doc. They protect one another so much. One major hospital actually locked me in a psych ward for 5 hours, thus creating a "psych record" to discredit me. Even my own PCP wrote me up as having Munchausen's (That is where a patient will hurt themselves then scramble about trying to get help. She wrote that I loved having bad things done to my body so I could try to get help.) Needless to say I "fired" her. A few docs were honest though, and those honest one's kept me going. They flat out admitted so much had been done for reasons unknown to them and my damages were so severe that they either didn't know what to do or they feared doing anything because they were afraid they'd make me worse. I was going to die from starvation (due to the small bowel obstructions) and from backed up stool in the colon (due to scarring) if nobody tried anything, but I did see their point. These honest docs restored my faith that I could find the right one to save me if I just kept going.

Everyone, sorry this is so long. I have seen a side of medicine that most people will never see. But just know that you are the ones "hiring" the doctor. The doctor is not in control of the consult process; you are. Also don't be afraid to "fire" any that don't "consult" to your satisfaction or any that you feel don't fully understand your situation. You have one body; it's the only one you'll ever have. (OK I'm hopping off my soap box

Well wishes to everyone. Love, Rosemary

Post Edited (esoR) : 10/28/2009 8:47:32 PM (GMT-6)

Lizzie,
Thanks so much for the info about MOM. I'll definitely try it and will let you know how it works.

I feel so bad for you. I know after surgery in the hospital I had a couple really down days and it was the most horrible feeling. I even said to my husband "have you ever not cared if you lived or not"? Well, that scared him to death and the next thing I know a social worker was in the room visiting me and asking me all kinds of questions! Luckily, the depression only lasted a couple days but it was one of the worst feelings I've ever experienced. I had the baby blues for a week or so after my son was born, also. I'm typically an upbeat happy person and just those two experiences made me realize how truly horrible it is to be depressed. I'm in no way suggesting my small experiences are anywhere near how you are feeling, but just those few days made me have a new understanding of what it feels like to not really feel.....does that make sense? I so hope your meds start working soon and you can smile and laugh again. If you can just shake that flu, you can put your energy into feeling better about your surgery and your new life. I can understand your fear and it is certainly justifiable, but hopefully as you continue to feel better and poop regularly, your fears will subside. Until then, don't beat yourself up for how you feel. You're working on getting better and that's the best you can do right now. You know everyone here loves you and we all want Lizzie back, too!!

Hugs and sweet dreams,

Janie

Hi all,

Well, I'm back from my visit with my surgeon. Today he was extremely pleasant, couldn't have been nicer or sweeter. I have no idea if he was sincere or not, but if not, he's a great actor..

Anyway, the transit study was normal. I told him I drank prune juice every day, but he didn't feel like that was an issue, he actually told me before that I could drink it daily. He said there were very few markers scattered throughout, but it was a normal transit. I honestly think the small intestine is working because the pressure I get in my rectum comes within a couple hours of eating. I do feel like things are going through me ok, I don't have alot of pain or bloating.

The deogram was a different story; I was able to pass less than 1/2 of the barium. I have two small rectoceles, and he said what Jenise told me and that the size of the rectocele doesn't always determine the amount of dificulty emptying. I had no prolapse, just the rectoceles. He said I may be a candidate for the STARR procedure, but he doesn't want to jump into doing any further surgery until it's been a year. I definitely have an outlet disorder and he's afraid that if I have the STARR procedure and the rectoceles aren't the problem, if he gets rid of the pockets I may have more pressure and more pain if I can't move my bowels. He still thinks I need more biofeedback, and that would be an option if I could find somewhere else to have it. I didn't want to throw the therapist under the bus, but she's horrible. I had biofeedback with with another therapist before I had my colon removed and she was great. The biofeedback didn't work, but I'm sure it couldn't because no stool was getting to the rectum to come out. Unfortunately that therapist is gone and the new one is just a dingbat. All she would do for 2 to 3 hours is talk to me about the benefit of fiber, tell me about all her problems with constipation and what she does and only would spend about 15 minutes with the monitors. I tried to tell him without being specific that she and I just didn't connect very well, and he said "well, you are a special case and she hasn't had much experience with someone with your issues". Well, that's fine, but it costs me out of pocket over $128 per session and I'm not going to waste that money with her. I'm trying to find another location, but haven't had any luck so far.

I told him about what the prune juice does as far as emptying me, but it taking several hours every evening and it's very liquidy and I get horrible butt burn. He gave me a prescription for miralax and said to try it for awhile and stop the prune juice. He thinks the prune juice could be irritating my small intestine.

I'm also scheduled for another anorectal manometry next month and then see him again in 3 months.

I'm not sure what to do. He said he really doesn't want to see me with an ileostomy unless absolutely necessary and he feels that while we can't fix the rectal issues, we should be able to work on a plan to make it bearable. I told him that I truly don't have an eating disorder, and he smiled and said "I know you don't". Again, I hope he's sincere. He examined me again and felt the rectoceles and I told him the one at the front near my vagina isn't where I feel stopped up. It's one in the back.

Not sure what to do, but starting tomorrow after work, I'll try miralax. He said I'd need to play with the dosage to see what works, but I'm not going to today because tomorrow I have to be out of the office alot and I don't want any surprises. So much for my visit.

Jenise,

Have you heard from your Dr. yet??

Janie

Hello ladies
This is your Jen update she is off the i/v they had her try solid food today.She ate three bites of egg half a piece of toastfor breakfast then stomach pain got too much.Supper a little soup and half a grilled cheese in the course of an hour. No bm after eating this seems to be causing concern as well some swelling in her stomach area but she feels lots better today.
Keep you posted

hello all, so many of us are still struggling.... Lizzie.... wish i was close so i could come see you and we could talk more. wish we could all meet! i hope your flu is over soon and you feel better. don't worry about not going much, cuz you're not eating much either. i didn't eat for 10 days - 2 prior to surgery and 8 days after till my illeus was over and when my bowels woke up i only had little bits of green stools, which was just bile coming out. don't be too hard on yourself. having the flu while recovering such a surgery can really mess you up with depression, it's totally normal! you'll get through this and be back to your life, and to your own self pretty soon, i have no doubt about it, honey! i'm praying things work out for you as best as possible and you keep having bms as should!! you so deserve to finally feel good and be happy! Doug, thanks so much for updating us on Jen! sounds like her progress is normal for this stage post op and that's good!! :) hope she keeps getting better and hopefully go home. can't wait till she's back telling us all about it and how good she feels! pls send her my love and tell her she's always on my mind and praying for her. keep us posted! Janie, i hate to hear how you struggle and even had to wear depends. this rectal pressure sounds awful. i was hoping you did have a prolapse, cuz that would have been a perfect explanation to the pressure you feel. when i start going, it's always little bits and takes me few hrs to finish. i get back from work at 5:30 pm, eat my dinner and then i keep going till i go to sleep. i can't go anywhere but home after work. so i'm pretty much like you being bound to the b/r and that's not a way to live. i wish we could have just few BIG ones instead of the 1-2 spoons at a time.. ): this dilema is so scary... i too have front and back rectoceles, for me the one in the front towards the vagina feels more dominant and bothering me. but to think that the STARR can cause damage rather than fix it... so you're gonna start biofeedback again...??? gosh i hate biofeedback!! but it does sound like your dr was listening this time and willing to try whatever he can to help you, at least that's the impression. maybe he just had a bad day that day himself, and after all drs are also human. the thing i'm scared of the most is that if i go to my dr again, he won't take me seriously and dismisses me or something and i'll have to find a new dr. i'm so tired. Jenise, i can't believe your dr let you go on with this for yrs and that's just making so mad!!! it's more understandable in my case, when i went to my intenist telling her about my issues i was in my early 20's, never had childbirth, very young, she couldn't imagine i could have such big issues, and still that doesn't justifies the way she dismissed me, but in your case it was only expected after your childbirth and they still didn't do anything about it for yrs!!!!!! i'm sorry, but it makes me really really really mad!!!!!  so still no word from your dr yet? Marisa, honey, i'm so glad your mom is coming home! how are you feeling with all that's been going on? is it affecting your bowels. i'm so sorry you're having such a difficult time in your life and will be praying for your peace of mind, happiness and health for your mom and you! F1ghter, yes, butt burn are tough lol! but i'd take them instead of constipation :) ha ha... Christy, work is o.k, i'm just worried b/c all i can eat is a soft-liquid diet. i can't eat bread, ptatoes, fresh veggies and fruits, rice, pasta..... if i eat those i won't go to the b/r... ): how have you been?? are you able to go enough?? Judy... love you and miss you. hope things are working out at work and your kidney. love all of you my wonderful friends!

Janie, my diet is a very limited list of foods, which consists of: tuna, eggs, cooked and peeled carrots and zuccini, cooked and peeled peaches and pears, i limit my self to 2 slices of oat bread, wheat free and yeast free. i used to eat TONS of sherbet, but noticed i'm gaining too much weight with that lol, so i eat much less sherbet now. and of course i drink about 3 litter water a day. first thing when i wake up in the morning i drink 1/2 litter warm water, that seems to help produce a bm, then i eat the oat bread with tuna (i add 3-4 table spoons of the mashed carrots and zuccini + lots of pepper and mix it with the tuna - i'm not sure, but i think the spiced food also help, but i don't know, at least it can't hurt), then at work at about 11:00 am i eat a yogurt, it's a specific tipe of yogurt and i'm gonna have to ask my sister who lives in san diago if you guys have something similar in the U.S, cause it's an israeli product. this thing really helps me go and after i eat it i have 3-4 good bms that clean me out till the last one is actually green stools, which as far as i know, it's bile. then when i get home i eat a 2 eggs omlet to which again i add 3 ts of the mashed carrots and zuccini, 1-2 cooked fruits, a bowl of the mashed carrots and zuccini and a small portion of sherbet. i don't like chicken, but if you do, then definitely add it to your diet. it's also safe! this diet helps me keep my stools liquid-watery, cause only that way i can pass it easier, but even when it's liquid i still feel the evacuation is incomplete, but it's better than when it's solid. so i go several times cause the evacuation is incomplete and bound to the b/r all evening. anyway, these last 2 days i couldn't help it and ate lots of "no no's", like on wednesday i ate a DONUT!!!!! and some french fries..... that REALLY made me constipated. then last eve i ate marzipan, milk chocolate and some cookies!!!! and that constipated me even more ): i'm SO tired of this! and i'm having a lot of abdominal pain today b/c of all the things i ate. most of the time i don't mind eating this diet, but like once a week i need to break it and eat some of the no no's.. so when i do and get stuck, i just drink a full glass of prune juice that helps some. also if i can't have relief then i just go on clear liquids for a day and that helps A LOT. but honestly, i don't think it's normal that only by keeping this soft-liquid diet i can manage, we should be able to eat solids and if we can't it's not normal. just don't know what it is, if it's a narrowing or is it the pelvic that can't push solid stools.... BUT!!!! if i find there's no solution and i'll have to eat this food for the rest of my life, then i guess i'll just have to accept it. A QUESTION TO ALL OF YOU WHO HAD THE SURGERY.... my bikini line incision is always hurting, it doesn't seems to improve at all and it's really painful. do you all have the same prob? will this pain ever go away???

Doug, thanks again for Jen's update. Sounds like she is making good progress, hope she will soon be home - we miss her!

Janie, gee... maybe your doctor had a bad day..? Glad he was okay this time, and it sounds like he is trying to figure things out. I think it is common for them to want to wait a good while after 1 major surgery.. I know that is the case in my case too. When I have the defecograms, I am able to pass the barium, much, much easier then I am my stool.. even with my rectocele. But getting the stool there is my issue. I definitely would try the MiraLax or the MOM. I still have my colon, so things are different - but for me personally - it took 3+ days for the MiraLax to start working, and about 5 hours for the MOM. But to be fair - I took a double dose of the MOM.

sigh.. no news yet from my doctor. I did email him yesterday morning.. so either he is away, or has not looked at them yet. I hope I hear soon.. 2 of my recent test indicated a rectal prolapse - 1 test did not. What the doctor determines will be interesting.. and the whole twisted up, prolapsed colon has me wondering too...

Hodaya, it sounds awful that the I lived like this for years, but honestly - my prolapses have never bothered me too much (except for the first 18 months after my son's birth). I never really had pain or discomfort (except for sex), but when things started to protrude.. that freaked me out! Even then, I didn't go immediately - but finally did after I could tell it was rapidly progressing! I have had 3 other tummy surgeries, and your incision will be tender for a while, but it shouldn't actually "hurt", but it could be the nerve endings are trying to regenerate.

Hodaya - now you have me really scared!! I DO NOT want to live on a diet without doughnuts, pizza or chocolate!!! I really enjoy food, and hope that I won't be on a limited food diet - that would just be the worst thing - worst then not pooing! LOL

Lizzie, thinking of you again. Hope today is a brighter day. As soon as your fever and flu symptoms are gone, try and go out and do something fun, even if you must force yourself to do it.

Marisa, so glad you were able to bring your mom home. That's where I would want my mom to be as well. Thinking and praying for you!