Total colectomy 2011.2

WOW! Allie, thanks for the update. I am not surprised that Lizzie has suffered nerve damage to her bladder. I have too. It does not take much to damage these nerves and she had so many surgeries. So glad she can eat. I pray this keeps up. The hospital she ended up at sure has done right by her, thankfully. Sure hope they figure out the lack of production of urine, could be some kidney affects, and the hair loss, whew! Glad she has this current hospital.

I have "sinus/viral syndrome", it is some long lasting virus that lasts about 2 weeks with residual congestion "for much longer....." in the words of my doc. Seems to know what she is talking about as that would be me. Am through the worst part but sooooo tired. Praying for you too that they get things sorted.

Thanks for the update, Rosemary

hurt,

Yes, a full rectum can definitely impede urine flow. I had that before my damages were all figured out from my original unneeded sigmoid resection and all those other pelvic surgeries that were done beyond my consent (my case not the norm).. BUt after my rectum was basically scarred in and unable to evacuate due to all the scar tissue, when my rectum filled with stool it would make me be incontinent of urine. Rosemary

P.S. During the 13 months between the surgery that created all the scarring of rectum, colon, and small bowel, and when I got the lysis of small bowel adhesions and ileostomy, I had to take 66 gallons of Colyte bowel prep to literally melt stool and force it down through all the scarring of the rectum/colon. I would go for as long as I could stand it then would do "THE PREP". Got accused my my PCP of being Laxative addicted. Yeah, like I would do that for kicks NOT!!! When I finally got the help I needed and got the small bowel extricated from all this scar tissue and the ileostomy, I had a councilor my PCP made me see say to me "Won't you miss the ritual of the bowel preps?" I said NO WAY, WHO IS THE PATIENT HERE! Can you imagine a shrink asking a patient that whose guts were scarred in and was fighting for their life. The field of medicine never ceased to astound me after that day.

Alibee, Gee your PT and my former PCP (I have since "hired" a new one) should get together and have a patient bashing fest! Your PT's comment was unfounded and rude.

That issue of me being accused of laxative abuse was MILD compared to what else my former PCP said about me. She actually wrote in my files that I had Munchausen's Disease. That is where patients love being hurt so they can seek more medical treatment. I HAD to see 11 docs nationwide to get my life saved, goal being to get fixed the best that could be done so I would NOT have to see another doc. So because of that I had to see 2 psychiatrists who cleared me of the PCP's libelous charge. THEN I had to do a ton of paperwork and get the PCP to retract her libelous statement.

I COULD write the book on iatrogenically injured patients. THEN I go on cruises, share that happy info with one doc to dispell the myth of me having had Munchausens, so he writes about the cruises in a report. THEN the disability insurance company uses that info to convince my new PCP that I am able to return to full time teaching which I am not after going through all I went. Due to small bowel adhesion obstructions I was unable to eat for 7 months and was given no IV nutrition. During that time I developed chronic fatigue and lightheadeness which obviously improved when ability to eat was restored by lysis of adhesions and ileostomy. BUT I never bounced back full strength. Like would anyone? I'd lost a quarter of my body weight, muscle mass, bone density; had emotional trauma, physical trauma, etc, etc.

So my new PCP writes up yes, I can go back to FT teaching lifting 10 and 20 pounds which I cannot do. So the ins co cancels my long term disability benefits! So I appeal with the disability insurance company and write up a factual report of how sitting on a boat watching water and taking half day side trips is different than putting in 12 hour days teaching, correcting, lesson planning, parent meetings, endless committees, etc. DUH! But I had to explain the diff between vacations and working FT.

We shall see what they say. Besides I would challenge doc to go through what I went at the hands of another doc and then bounce back fully. What some docs expect of patients is well beyond my understanding of any of this. So I am going to travel and enjoy my life the best that can be done for as long as I have. I could reobstruct on a left over adhesion and die in the next minute, so I sure am not going back to the lug and haul of my career (which I did love, but those times are gone. My school system retired me because I was so damaged and was literally out of commission for 13 months.)

What is scary about iatrogenic injury (injury done by docs) is that it is VERY hard to find another doc to fix you the best that can be done. Even if that happens which through my own perseverance it did for me (luckily), even after that you have to deal with all the politics which basically never ends. Even if you sue the original doc for what is really a suable issue like me (not simply poor outcome of a needed surgery done by a doc the best he could) then you are what they call blacklisted. That means other docs can just blow you off. Basically 8 out of 11 did. 3 were sympathetic and knew what to do. The ones who ended up not doing my lysis of adhesions and ileostomy told me flat out the dangers that surgery would entail, but they agreed that needed to be done. They encouraged me to rigerously pursue the doc I finally got as that doc was extremely experienced. So that is what I did. Those supportive docs were the wind beneath my wings to keep me going. They believed in me and that meant the world to me. But all the others just blew me off as they did not want to chance dealing with my damages and having it backfire. The worst were the ones who phrased is as "my fault". Those were the darkest days.

Been down a road most people never go and a road that should not exist. BUt the medicolegal world is very serious. You would not believe the things I've learned. Google blacklisted patients and sins of iatrogenic injury and you will see what I mean. Had I known any of this existed I would never have had any elective surgery of any kind ever. Most people are unaware that this side of medicine exists. Rosemary

Post Edited (esoR) : 4/3/2011 9:59:29 PM (GMT-6)

Rosemary,

I totally hear you on doctors anymore.  I mean, I am not dismissing all doctors, but I feel a lot of them think they are above us and know better.  Right now, I actually work in medical records in a hospital.  I went to school orginally to become a doctor; however, I got turned off by it.  I love studying and learning new things about the body, but I just hate, hate all the aspects of insurance, arrogant people, etc. in medicine anymore.  Nothing can seem to be done right until you find that one right person.  I don't know, maybe I could have been that one right person, but I did not want to go through the stress.  However, I wish I would have did a backup plan for becoming a teacher.  I have looked into some online programs for becoming one.  I would like to teach math or science.  Again, I have postponed things due my CI, since I have been suffering for soo long, and I getting soo weak, exhausted, and tired from this disease, it sure has affected my appetite and everything from me mentally and physically.  I wonder sometimes if I really could have moved on successfully and gotten my masters and had enough energy if it wasn't for this.  Guess I will never know?  First thing first is getten better.

Oh, I understand completely where you are coming from the laxative addiction Alibee and Rosemary.  I mean I do not know how a laxative addiction person could take laxatives everyday.  They drain me!  I have certaintly all my life never taken them everyday.  I mean, I struggled with a little bit with an eating disorder back in my day (which I truly I think about it now b/c I was young and always gotten written off by everyone- it was my CI-b/c I remember my belly hurting all the time-I could not poop!), but I have always tried dietary measures in my past or take simple things like colace to push my stool out.  Then, when it was starting to get really bad this past few years, I had to take dulcolax.  Oh, I do not like taking that stuff!  Of course, I found out why nothing ever worked for me, even enemas or suppositories, my stool either took 2-3 weeks or who knows how long to reach my rectum, or never did.  I developed a kink in my splenic flexure - hence the laprascopic left hemicolectomy I had - which I still struggle now. 

Rosemary, cruise, completely agree!  It is different than working.  You can relax, and do whatever you want.  The staff does everything for you, and you just lay out in the sun.  At work, you have to WORK!!!

Actually, I went on one a few weeks post-op my surgery.  The week before I went I asked my surgeon if it was okay. (I mean, this was a gift I received from my friends-paid for me!   ) I was worried b/c immediately when I got home I was taking colace 2x a day, and it wasn't doing anything.  So, I called the office and I took mom b/c that is what they gave me at the hospital to produce a stool.  However, I was still having to take have double strength mom, colace, etc. and it still hurt to produce a bowel movement at times, or then I finally had an explosion.  So, he told me to miralax a couple times a day, and just relax on the cruise, since I was still sore.  Well, before we went on the cruise, I mean I was getting something out of me, but omg, did it hurt trying to strain, and I was not getting good movement at all.  I just felt the miralax making me bloated, and I could hear all the gurgling inside me, but nothing wanting to move out.  

On the cruise, bang, it hit me, I got sooo constipated; I had a horrible time.  After not going like at all, for at least 2 weeks.  I was trying everything I could on the cruise to get stool out, and actually, I was never glad enough to get back home to get cleaned out; I felt like I was going to vomit for all the stool in me; like if I put one more ounce of food in me, ughh.  I mean, I went down to the medical center once during the cruise to and drank a magnesium citrate bottle, hours later, nothing, so combined with senokot, and got something out, but by the end of the trip; I was still ever sooo constipated.  I mean, right now I am back to square one with taking the same amount of dulcolax I was pre-surgery, gurgle gas noises, trouble passing gas, still about 80% of the time getting pain when I eat, left side building up with pressure, feel better after laxative, but don't.  Did its job, and now backed to this trapped air inside me.  

Even after the trip, I tried really hard the next couple weeks just doing the bare minimum (I was like, okay, I was on vacation, out of routinue, maybe things will improve.)  Taking just the standard dosage of miralax, etc.  Nothing, I was not getting movements at all.  Work was hell b/c I finally went back, not going all week, feeling bloated, barely wanting to move!  Then, come to find out I have this stricture now.  Hence, is why I am meeting with an actual colo-rectal surgeon next week b/c I just do not think it is normal with everything I am still suffering.  I know my current doctors want to the colonoscopy with dilatation, which does need to be fixed (they think I will okay after that!), but I def. wanted a second opinion now.    

Try to have a great Monday everybody! 

2009-Diagnosed with IBS after years of battling with constipation

2010-Confirmed Colon inertia after transit study

2/03/11-Laprascopic left hemicolectomy to remove a kink in colon

Now have a Stricture

Still battling with trapped gas and constipation

Second opinion-April 11th

Post Edited (hurtboy) : 4/4/2011 5:37:27 AM (GMT-6)

Hello Everyone,
I am new to this site and have been reading through all the posts. I'm currently undergoing testing for CI and PFD. It's pretty clear that I have PFD and just finished a transit study that showed I most likely have CI as well. All the markers were left in my colon and on the last xray they were spread from the end of my transverse colon in to my descending colon. I am also having bladder problems and just had a urodynamic study done which I pretty much failed and have to use catheters now to go to the bathroom. It's looking like I'll end up with an ileostomy. I am really scared about all this and starting to get really down about it all. I know that I can't keep living like I do... constantly bloated, in pain, uncomfortable and unable to have a bm... I'll go about 10 days or more with out a BM and then all of a sudden it's as if I have diarrhea except the stool is rock hard. I end up in tears every time it happens.

Hey Gimpy - I know it's easy to get upset and anxious and feel depressed all at once. It can be overwhelming. I am sort of in the same boat as you, I have CI and an issue with PFD, I am just not sure exactly what it is or how serious. I too, spend my days bloated and uncomfortable, even when I sleep - I never really sleep because I wake up so often from being uncomfortable. I have my next appointment in a couple of weeks to decide where to go from here. I don't know what my fate will be, maybe my pelvic floor is good enough that they could do surgery and it would work...but I have also begun to accept the fact that an ileostomy may be in my future, I have read through pages and pages on this website, and I've read other people's blogs and looked up videos of people explaining their ileostomies online...and what I've learned is that so many people have gotten their lives back after getting ileostomies, and I think once you make up your mind and you're at that point where you feel like you are standing on the sidelines and everyone else is out there living...I think an ileostomy would be, sure, a big price to pay....but for an even BIGGER reward. LIFE again! I yearn for a day when I can just wake up in the morning and put on normal clothes and go about my day. Eat something for breakfast if I want...all the things normal people take for granted.

Anyway, I'm rambling now. But My advice would be, if at some point you have to make a decision like that...to look at the bigger picture. If it would improve your life, there is your answer.

oh just saw the the urologist suggested self-cath. Anyway, as she cant do this (i cant do this as well, so I can relate; my urethra is spastic and so much in pain even without a catheter) she has to get a temporary urostomy, a spurapubical catheter (same thing I have) at least for the period until her docs find ou what's wrong with her kidneys. The kidneys could have been already damaged by prolonged unnoticed reflux but if she does not do anything for proper bladder emptying things will get even worse with her kidnyes. I already stressed that out some time ago.

Thank you for your kind words and making me feel welcome! I'm so sorry for all that you've been through, Rosemary, I can't even begin to imagine!
Alibee, I have put serious thought into all of this. What it comes down to is this - do I want to live in so much pain for the rest of my life? No, I don't. I feel like once I get the hang of dealing with the ileostomy, I won't have so much of a problem dealing with it emotionally. My biggest worry is how my fiancee will feel about it. We've had numerous conversations about it. He loves me, not my digestive system. Last night and today we talked about it some more and how we could deal with it during intimate moments. One way to reclaim my sexuality is by going shopping for some lingerie! It would hold the bag in place and help me feel more like a woman at the same time!

As far as Lizzie's situation... I've read what the poor thing has been through and my heart goes out to her. Has the idea of a uro-stimulator been discussed? I am friends with a person who just had one placed because her bladder stopped working. My problem is that I can't start the flow of urine and my bladder doesn't empty fully. I also have bladder spasms for which I take Vesicare. I was just taught how to use self-catheters. It took some work but I got it! It was actually a nice change to be able to urinate without having to strain or push on my bladder in order to go.

Rosemary, that is great news about meeting somebody that you enjoy being intimate with. :)

My husband could care less and our sex life is still great post ileostomy. My friends all wonder how I can have sex "with a bag"....LOL But, it is much easier having sex with my bag than having sex with a colon full of CRAP! HAHAHAHA

I am still feeling GREAT and wish I would have considered the ileostomy sooner, but remember, I was absolutely terrified of the ileostomy and when my doctor mentioned the possibility of me possibly needing an ileostomy, I was like NO WAY! I thought he was nuts.

I did go to Six Flags with my family Thursday and it was awesome. I was able to ride ALL of the roller coasters and my stoma was just fine. I was so scared, but everything went just fine. I just made sure they didn't push the bar all the way down into my stoma.

Sorry I haven't been around, but my life is busier than ever now that I am feeling so healthy. I have been trying to catch up on some things that I have neglected for years while I was so sick. Spending time with family is my priority #1.

Rosemary, we are considering taking a cruise in June and I wanted to ask your expert advice. Call me if you get a chance. I will then postpone my surgery until after the cruise...YIPPEE....

To all new comers, Welcome. I am living life to the fullest with my ileostomy. So, if any of you are considering going "the bag" route, then just know it is not the end of the world.

Tracy

Hi,
I was reading and seeing that so many of you have this problem. I was wondering if someone could give me a little advice. History: Hysterectomy, bladder sling , bladder sling reversal ( could not urinate ) Cystocele and rectocele repair, ovaries removed with adhesions, sacralcolpopexy and tummy tuck. ( because of the mess from surgery. I am havign problems with pelvic pain and incomplete bowel movements. I have to go twice to empty ( if I can ) and then the pain is terrric. I have had a couple defecgrams done: 1st: Anorectal angle at 90 at rest. The puborectalis muscle is prominent on rest. Anterior rectocele abd intussusception and incomplete relation of puborectalis on defecation. I went to Physical therapy and can relax better, but still having problems and pain. 2nd defecogram: Norman anorectal angle and good postion of anorectal junction. 4cm anterior rectocel and grade 1 internal ectoanal intussusception. i was able to empty this time. I had a anorectal manomentry study; Normal restin pressures with very exaggeraterd squeeze pressure. Sphinter relation is seen with bear down. but not consistently. Rectal sensation inact bur urge could not be elicted with balloon distention. ballon expelled in 1 min and 12 seconds. One colo rectal says obstuctive defecation and resection and rectopexy. But says that may not cure all my problems. Can an intussusception and rectocele be the cause of the pain? I don't want to have the surgery and be worse. But I get this horrible pressure and pain. rectally and vaginally. Could that just be the rectocele. I have another appt with another colo rectal doctor next week. i cannot find any one who gives botox in the puborectalis muscle, even though it seems to be better. ANy advice. It is a horrible way to live. I have alot of pain by my belly button when I have to go but can't too. I am sure I have adhesions too. ? I am scared that it might be the adhesions and pelvic floor problems and if I had surgery be the same or worse. Any advice Thanks again. Suzzane.

Hi Tracy,

Bad tooth ache Sat. night. Got it under control Sunday. Gotta get into dentist Monday. Scared. Auuuugh! Not need more garbage to deal with. WHY OH WHY did I ever have that hyst that started all my body falling apart like a deck of cards. Not the tooth thing of course but the small intestine, then mis-dx of what was falling and the road I went down. Auugh! Oh, well gotta deal with the here and now. I pancake on even bread. I would not dream of eating all the good stuff you list. Auuugh! OHh, well, nice out today, gotta get out and about. Talk with you soon. RJ

Oh Rosemary,
I cannot believe all that you have been through!

I have a rare genetic connective tissue disease called Ehlers Danlos Syndrome that affect all of my tissues. They are very fragile. I don't heal very well and am really nervous about the surgery. I had a laporoscopic surgery back in 2002 for endometriosis and it took me twice as long the normal recovery time. I had a lot of vaginal bleeding as well after. The stitches literally fell out of my skin, it was so bizarre. They were the dissolving kind. So, needless to say, I'm so nervous and scare about having such a major surgery.

He is aware of my condition and I plan on talking to him at length about it at my next appointment. I'm not sure when that is, sometime after my colonoscopy in a few weeks.