IBS-C (The "Good old days")

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/26/2008 11:10 PM (GMT -7)   
Hi,
Am new to this forum. I've had IBS-C since I was a kid and grew up in a stressful family situation. As an adult I got more into nutrition and had IBS-C really under control with diet. LOTS of cooked fruits and veggies and LOTS of water. One or 2 Phillips magnesia tablets per night and I had good BM's the next morning. Those were the "good old days." Then at 50 my world caved in. I was working full time at high pressure professional job (could get health insurance and retire early if I could do 3 more years of work). Elderly mother got ill. I have no siblings to share things like that with. THEN an elderly aunt of mine got sudden onset demensia and I had to serve as her power of attorney and settle her very complex estate. Life turned into hell. Worked 8-5:00, did stuff for mom (dad passed long ago), then worked on aunt's estate or traveled 50 miles to see her in her nursing home). I was a hamster on a treadmill and couldn't get off. Though still on my regime of fruits and veggies and 1 or 2 Phillips, I developed "incomplete rectal emptying." Miralax really made me bloated and gassy and kept me up all night. A valium for sleep however would help me sleep but cancel the good effects of the Miralax. Primary Care doc said "your body will get used to it." Then my aunt died and I inherited a lot of money. I could have retired and BOUGHT my own health insurance. MY GI doc told me to go to a colorectal surgeon to get the incomplete rectal emptying straightened out. I had a defecogram. It showed a big loop of sigmoid colon was blocking off part of my rectum. After tons of consults, I agreed to sigmoid resection, removal of right ovary because of huge benign cyst. Surgeons WAY exceeded consent, did a bladder lift, removed good ovary too (no disease), did a vaginal vault lift my GYN said I didn't need, but I didn't know these 2 surgeons would do it while I was under (so had no chance to say NO. Plus they did not discuss possibility of doing it, nor did I consent to it). THen they shortened my rectum without my consent. From all 7 procedures (only 2 did I need and consent) I developed severe intestinal scarring. Colon narrowed in to only 3 millimeters (Half the size of a BIC pen) where he hooked my descending colon to the top of my rectum then he did nothing about it. Vaginal vault lift unneeded raised vaginal vault too high and constricted my puborectalis muscle around my rectum so it could no longer open to defecate as it could fine before surgery per defecograms before and after. THen two loops of small bowel dropped into my deep pelvic cavity and adhered to my rectum and gave me small bowel obstructions for 7 months if I ate. I had to go on a nation wide search for someone to save my life. FINALLY found someone who dared deal with such damage. Had to have small bowel loops literally sawed out of concrete adhesions, elevated out of my pelvis, and a PERMANENT ileostomy. He used an adhesion barrier, so GOD willing I will stay free of small bowel obstructions. THat is my big worry; am sort of used to the bag. But with an ileo you can get kidney stones due to losing so much water, plus things CAN go wrong with the stoma, though thank God, so far so good at 11 months. In the meantime I lost my career. Mom had to go to a nursing home and LOVES it! I could have put her there in the first place and spared myself. Am doing as much travel as I can. But deep inside I feel that my life span is limited. Am only 52 and in perfect health until all the overly invasive surgery. My point, if anyone has a sigmoidocele, take Miralax, wait til your body gets used to it, even through all the gas. I made a bad choice and basically destroyed my life. I did not know at the time these two original surgeons had many suits for overly invasive surgery though I did check with our state medical Board, who said they were "squeaky clean." I also got opinions from 2 other major medical centers and they also advised sigmoid removal, but they would not have gone nuts when they got in there. I am pursuing suit, but it's practically impossible in our state to sue. If can't sue will file a real comprehensive complaint. I HAVE to go on the best I can and be grateful that one surgeon out of 13 stepped up to the plate, admitted there were injuries, and did something. Otherwise I would have died as I could not eat or defecate due to all the intestinal scarring. I just needed to share my IBS-C "Those were the good old days" story. I'm not belittling IBS-C, but this is the trouble I got into trying to follow medical advice and deal with defecation issues surgically, Not a good idea. Thanks for listening. Sincerely, Rosemary (PS please post if any similar experiences. THanks.)

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 7/29/2008 5:56 AM (GMT -7)   
Rosemary - my gosh, you have really been through the wringer. This is why I say sometimes surgeons seem too cut happy. They are not good at post-op care, they just assume surgery will fix all our problems and improve the quality of our lives. Sadly, in your case I am sure you would like to turn back the clock. But you can't. You have to deal with the new you as best you can now.

I had a rectal tumor diagnosed April 1999. I wish now I had obtained a second opinion, on how to surgically remove it but I decided to have the surgeon who my Gastro doctor and Oncologist recommend perform my surgery (and also my colostomy takedown surgery, 8 weeks later). My surgeon eventually moved out of town so he hasn't seen me through these past 9 years, post-op wise. His partner took over my care but he eventually referred me to an excellent female colon specialist/surgeon in my area. I know if I ever need more colon surgery, she's my surgeon of choice. She's on the cutting edge of the latest technology and has won many awards and recognitions. But to get back to my original surgeon, all tell me he did an excellent job, he got clean margins, I didn't need treatment because my tumor was caught extremely early, it was an inch in size. But resting on the third layer of bowel wall tissue, initially thought to be penetrating it. That's why I had a major resection, as opposed to a similar dilation/scoop out surgical approach. He took out 90% of my sigmoid and 15 inches of my colon. Internally I have no where to store stool so as long as I eat, I have bm's all day long. 12, 15, on a good day, on a bad day 20 or more. Very small in amount each tme, but I need to relieve myself. Holding it longer than 30 min. has resulted in cramping, pain, accidents, etc. I can feel the section of my "new" sigmoid/colon bulging when it's not meant to bulge like a sigmoid was meant to do. Long story short, his partner has wondered out loud why he didn't give me a J-pouch. That's the approach he would have gone with. My new female colon doctor now says I'd be an excellent inverted colostomy candidate. But thankfully I found another medical site, with forums, for ostomates. They have an irrigation forum and most there say if you struggle with IBS woes, irrigating isn't a good option (my surgeon says I can still have my lower colon removed, the inverted colostomy created, etc. but we no longer have good medical insurance and I certainly do not want major surgery, not yet, maybe if I'm a lot older than I am now, I'm 53). So there you have it, 3 colon surgeons, all 3 with different approaches. I am told at each exam and colonoscopy, inside wise, everything looks so good - I never want to look! That my surgeon did such a good job with me. I still wish I could talk to him though. I wish he hadn't left his practice. There have been so many questions I've wanted to ask him - for starters, why not a J-pouch? I was always in the one poop a day camp, before surgery, the "good ole days" as you describe (but in your case IBS-C).

I never thought my life would revolve around needing bathrooms on a daily basis! Not to this extent. I have worn out so many toilets in this house, I think 2 out of 3 are on their second or third working parts. My husband has to replace the handles and guts of each toilet every 2 or 3 years, because I use them so much. Sigh.....but what can we do? I can't give up food! That is the only sure fire way I know of that reduces my bm count.

Thanks for sharing your story. It's not easy road any of us travel on. I always think - if not for the Internet, I'd feel so alone. I've only encountered one or two people, face to face, that are willing to admit they have IBS symptoms. Most look at me so odd, as I just contracted an intestinal viral bug - yeah, one for 9 years! LOL

Hang in there....
Mary/Marsky

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 7/29/2008 7:35 AM (GMT -7)   
Have you sued for malpractice of the doctors that did too much? I've never heard of any surgeon not at least going out to the family in the waiting room--if they have power of consent--and asking before they do something extra. Other than that, they're only supposed to do extra if they see a grave need, as in there's something extra bad wrong in there. But I think they can hardly argue that your other ovary was bad (and if you still had it, you'd not have gone into early menopause). And what was up with fooling with your vagina? You didn't say it was broken, and unless they have proof that was somehow interfering with the function of your bowels, then that too was unnecessary and without your consent--malpractice.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/29/2008 10:52 AM (GMT -7)   
Hi Mary and Kariamon,
Thanks for your replies. I'm currently hiring medical reviewers for my case. Even THEY differ in opinion. The med board of our state is also at fault for not providing me with the information on my 2 original surgeons' 7 past claims and suits when I inquired pre-surgery. I would never have gone to them if I had been told of these. I've since received copies and all reflect patterns of overly invasive surgery one of which the patient died 15 days post-op due to ignored post-op leak at the sigmoid resection anastomosis (They did the SAME 7 procedures on her as they did on me). I think these 2 goons (spelling?) have a cookie cutter approach, they do the whole vagina, rectum, sigmoid, bladder, ovary surgery on everyone that walks through the door needed or not!) They get paid per procedure and need to haul in the big bucks for the company they work for. They are not even part of the hospital system they represented themselves as being affililated with. Their parent company has just built a multi- million dollar sleep study center no doubt with some of the bucks they have hauled in doing this multi organ surgery. CEO of their company said they have done 160 of these multi-organ procedures in the past 2 years. A local atty told me I am not alone in needing to sue, but even medical experts cannot decide which complication results from which procedure as they do so much. In my state (Mass) med mal attys don't get paid unless they win. So they are not apt to take cases that aren't iron clad guranteed of winning. I didn't uncover all these suits until I got a rep at our mass med board spring 2008 when I gathered info to write my claim or file my suit. The reps I got prior to my 2006 surgery did not know how to navigate their own data base as I was told there were no suits. All suits were dated prior to my 2006 surgery.
A prominent Boston Dr. consulted pre surgery also did not tell me he thought I had an inherent dysfunction of my pelvic floor. I found this in his notes I found out I could get After the fact. He had proposed lap sigmoid resection and removal of right ovary only. This made more sense, but then he quickly added "But this may not solve your incomplete rectal emptying problem" SO why would I have had surgery where the surgeon proposed surgery then quickly added, "But this may not work." Acccording to the tests I had per my med reviewers, I had perfectLY NORMAL pelvic muscle function (PRIOR to surgery). There was a lot of information that was not true nor complete. I've been beating myself up over my poor choice, but friends are helping me uncover more of what I wasn't told and more of what I was told that was untrue. I really did the right research, but fell into dishonest hands. The ileostomy saved my life, but the fear of repeat small bowel adhesions is what is really bothering me. But it's been 11 months and so far so good. The surgeon who finally helped me is tops in his field and went out on a limb politically to save my life. 11 other surgeons did nothing and were going to let me die as doing something would admit that the original 2 surgeons had screwed me up. If anyone is in desperate need of a great surgeon who puts patient lives over medical politics email me and I will give his name and location. Without him I would be dead by now. Thanks for your replies. Write again. Sincerely, Rosemary email rosemaryjablonski@comcast.net

Mattsmom81
New Member


Date Joined Sep 2008
Total Posts : 9
   Posted 9/25/2008 6:55 AM (GMT -7)   
esoR, I'm so sad to rad what you've been through and hope you can recover some damages from all this trauma. I have adhesions from an old surgery to remove a teratoma from an ovary when i was young. Everytime they do surgery, adhesions can form and they can give you trouble. small pinhole lacerations can form; risking our life.

Now I have another ovarian cyst, at 52 and I'm in menopause, (dam those hormone shifts) I have suddenly had an extreme IBS-C episode, prolapsed my pelvic organs and I'm in a lot of pelvic and abd pain. I'm between a rock and a hard place but am fearful of the surgery to lift my organs back up my GYN has recomended too. Especially when I read stories like yours. We can never tell can we?? surgery is not always a quick fix...always a risk..and good surgeons are paramount. So glad you found a good surgeon to put things best he could for you eventually.

Best wishes Rosemary and thanks for sharing your story. I hope you are adjusting/feeling some better now. PS I could relate to stress levels in our lives which I am sure contributes to my troubles... :(

Deb (mattsmom81)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/25/2008 9:56 AM (GMT -7)   
Hi Mattsmom81,

Just got your reply to my post re: my disaster pelvic floor repair surgery. I don't know where you live, or what your financial means are, but my suggestion would be (If possible) to contact major pelvic organ prolapse centers that do laporoscopic repairs (LOTS less scarring than open surgery, that is if they could do it. SOmetimes they cannot because of prior adhesions and all). Places that come to mind are the Keck school of medicine at Univ. Of Southern California and Dr's. Miklos and Moore. Dr. Miklos is extremely nice and will even call you back if you send him a short case history and your present questions. He is as I remember in Atlanta Georgia. Another good place is George Washington University Medical Center. I travel all the time and could have easily travelled to these centers. I just never thought of it. These are all places I contacted after my mess in an attempt to gather info for my potential suit. I cannot use what they told me for the suit because I proposed my question as a perspective patient and asked questions based on my original pre-op imaging tests. BUT the general upshot was "less is more" in terms of cautious approaches to pelvic organ prolapse. For my issue Dr. Miklos suggested rectocele repair rather than sigmoid resection. (Of course the BOZO's I got involved with also lifted my bladder, vaginal vault, and removed 2 ovaries (one which was fine), in addition to rectocele repair and sigmoid resection....they got paid per procedure had no consent for most of what they did and did not follow-up. BUT these bigger centers go by only what is needed. The university of Zurich in Switzerland which I also contacted after the fact, just for info also advocated only addressing the rectocele. I guess my advice is contact MANY of these big places, do consults by mail and phone forwarding your records, send a consult fee, then go with "Majority rules." Don't just go to your local doc and take it from them. Pelvic prolapse is a relatively new field of medicine and is poorly understood by most of the medical community. Besides the shape and position of pelvic organs, remember that there are connecting nerves that may or may not be functioning appropriately due to the sagging of the actual organ. SOmetimes just "lifting" the organ does not cure the issue of the connecting nerve that has stretched over time. I hope my suggestions help you. OUr cases are obviously different but this is advice I could offer anyone. GOOD LUCK, and let me know how you do. Sincerely, Rosemary (esoR)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted Yesterday 10:34 AM (GMT -7)   
Hi all,
I FINALLY found a law firm interested in my case for disaster overkill pelvic floor restoration surgery. Turns out the original scan was read incorrectly. wHile I had a small sigmoidocele, it appeared on the defecogram only AFTER I'd passed the rectal contrast and was not the source of my problem,let alone all the other unconsented procedures that were done. My case passed medical review and is now in the last stages of review by a senior law firm partner. I need to center myself so I won't be too let down if the final answer is no. BUT will hear this week and hopefully it will be a go. SO far so good with the ileostomy so am planning a world cruise Jan-APril. Atty said that their firm could work around it if they take the case. The suit has only to be filed bythis July to meet state statute of limitations, the case can be done any time after that. Maybe even an out of court settlement. She said it will actually strengthen the case if I'm traveling as I have "moved on with life" despite having a permanent bag, better that than being dead. My ostomy surgeon is thrilled, needless to say. Will keep you posted. SIncerely, Rosemary P.S. Despite consulting at 3 hospitals, they all read the original pelvic organ scan incorrectly, so even if you do your homework and go on multiple consults, my latest lesson is get your tests and send them on for further review. WHO IN THE WORLD WOULD EVEN THINK OF DOING THAT? THAT IS WAY OUT OF THE WAY MOST PATIENTS REVIEW MEDICAL CONSULTS. However, my radiology reviewers in NY, Zurich, and California have been wonderful and have actually faxed me still pictures of my defecogram test and have labelled parts with measurements. They are actually educating me in dynamic pelvic radiology. I was kicking myself over and over for having the original pelvic floor "restoration" surgery, but am easing up on myself as how would I have known the original scan was read wrong by 3 hospitals. Two of them very prominent hospitals. VERY SCARY!

hmvx3
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 12/10/2008 11:47 PM (GMT -7)   
Sorry to hear about your problems Rosemary, I am having gallbladder problems but hopefully they will reside once it is removed- I think about every one of your stories and hope you all the best. happy holidays
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