Total Colectomy 2011.1

Marisa, did you catch my last post in which I wonder if your GI issues and join pain may be symptoms from an auto-immune condition like lupus erythematodes. you may want to ask somw questions in the subforum of healing well.

Hello Marisa. Thanks for the welcome. I would agree that, while not necessarily "nice" to have others suffering, it is comforting to know you are not alone. It seems like this forum is the minority of people who continue to have problems. Of the thousands of colectomies performed every year most seem to have great outcomes. If you have several other issues going on at once of course just removing a sluggish or non functioning colon isn't going to fix the other issues as well.

Jen,

Are you able to get a CT ENterography or CT entroclysis test to see if you have narrowings in your intestines indicating possible adhesions from the outside?

If you have adhesions causing small bowel obstructions and they are blaming all this on slow motility, you will not get a cure?

DIdn't all this exacerbate after your hysterectomy? Sounds like could be a combo of slow motility and adhesions. I know your GYN was not into lysing adhesions, but if you have narrowings due to them you need to find out and find a doc who does specialize in adhesions and use of adhesion barriers.

Then you would only have the slow motility issue not both the adhesions and slow motility.

Just a thought and thinking of you. Rosemary

"Developing adhesions after hysterectomy surgery is quite common, even when measures are taken to prevent them from occurring. Medical studies estimate that as many as 55 percent to 100 percent of patients with pelvic surgery will develop adhesions. This can happen when scar tissue develops or when the protective tissue around internal organs is disturbed during surgery."

Peltz,

When I get around to writing my patient advocacy book the first thing it is going to start with is 2 very simple statements about the human body that are not on any consent forms and rarely if ever mentioned in any consent discussions by surgeons. BUT everyone seems to find out after the fact. 1. Every organ in the pelvis is coated with something called peritonium. This is like a piece of cellophane. It helps organs slide past eachother and helps them do their job. 2. The minute peritoneum is cut into as in any surgery, this cellophane type wrapping is split and as the surgery site heals adhesions form. Often these bind organs together and they can no longer slide past eachother. Pain can result and the worse that can result is small bowel obstruction. 3. There are over 600,000 hysterectomies performed each year, many are for fibroid bleeing. Per the HERS web site, you never need a hysterectomy for bleeding from fibroids, there are numerous options today. BUT still hysterectomy leads the nation in the most performed surgery. With I think C-sections close behind. 4. The body is like a house of building blocks. OUr bodies are held together by volume. If something is removed (in my case I'm thinking of my uterus for my hysterectomy due to a fiboid back in 1995) then other things can shift around. In my case a loop of small intestine fell into the space where my rectum separated from my vagina due to the (unneeded) hysterectomy, that small bowel was mistaken for sigmoid colon, then I went down the whole road of misdiagnosis, unneeded sigmoid resection, done wrong, yada yada......but the point of my book is going to be wayyyyy too much stuff is done to womens' bodies WITHOUT FULLY INFORMING THEM of the long term consequences.

The HERS foundation currently is lobbying to get a bill passed in Indiana about the long term effects of hysterectomy (an I got every effect they mention) but I think it will be a miracle if this gets passed because so much money is made from doing hysterectomies. BUT it entails showing women a 9 minute film that discusses the effects that it has on pelvic anatomy nerve connections, muscle ligament connections, blood supply connections. It is excellent and written by 2 doctors. Had I seen that film, I sure never would have had a hyst and not gone down the road I did. Women's "health care" almost killed me and still may, but hopefully not.

I'm not saying this against anyone who has had a hyst as there are definitely situations where they ARE necessary. BUT, I totally agree with you, the consent for these and other pelvic surgeries are far from informed. IT's really awful. BUt hopefully with all the alternatives now, things will be better for the next generation of women. Rosemary

Requesting some help/direction...

Hello!  I'm new to the forum, and I'm looking for any info on colonic inertia for

someone who has not opted for a colectomy (at least, not yet).  I've struggled

for some time, and I've had a good 1 1/2 years with symptom reduction until

about the last 6 months.  After reading much on this site, I'm more educated

but at the same time feeling a little more scared from all the knowledge.  My

workup at Mayo showed entire colon invilvement with CI, and I was offered

a sub-total colectomy  or to just continue with tap water enemas and miralax for

as long as I can.  I really like my Mayo doc, after having been through many, many docs

who were clueless or were even downright rude/hostile.  Amazing!

I really do not want my situation to get worse, but I know from much personal

experience and struggling with this diagnosis  that there are aspects

to our health that are out of our direct control, obviously.  I'm looking for ideas to

keep things moving through my colon while I still have it.  I get really distended,

pain, gas, mucous, unable to pass hard stools.  I've had pelvic floor retraining, etc.  Any ideas?

I tend to avoid laxatives, but now I'm wondering if I should try a few to help.

Thanks so much.  If there is another site that my questions/comments would be

more appropriate for, I would also appreciate being directed there.

Thank you,

Willow

Lots of prayers for sweet Lizzie, please!!! She was admitted late last night- throwing up and then dry heaving the pain was so bad. Thankfully, social work is going to make sure that she gets all the consults she needs. She and her mom made it very clear that the back-and-forth trips to Cleveland are very hard and not much is being done there anyway. GI, nutrition, and urology are being consulted. Pray they can figure out what is going on quickly! She does have a UTI and a transvaginal ultrasound showed a fluid mass, but they are still checking things out. The most upsetting part has been doctors shoving her off onto other doctors who shove her off to other doctors. It's like a cruel game of hot potato. But! She put her foot down, said enough is MORE than enough, and that she needs to be treated there, as they are perfectly capable of doing so. Such a fighter...keep praying for her and her family!

 

Sarah, I think it's ridiculous that the German docs won't do the genetic test on you. As far as medical procedures go, this is a simple one, and one that could provide so many answers and much direction! I hope and pray someone will agree to do the test without having to wait for tissue analysis. I will take a look at the pictures you posted online. I don't know if you saw the ileostomy options my surgeon gave me...if you have the time, would you look at that post and see which option you think might be best? It's a few pages back in this thread.

 

I do have altered stomach emptying. I have had the gastric emptying study many, many times. Sometimes it showed significant gastroparesis and other times it showed my stomach emptying faster than normal. I definitely have a "global" or diffuse motility disorder. For the past several weeks, it feels like I'm back in the gastroparesis cycle- whenever I eat, I can feel the base (pyloric region) of my stomach tighten. It feels like a boa constrictor is wrapped around it and won't allow the stomach to empty. So far just lots of pain, nausea, and regretting eating; no vomiting yet...hopefully it will stay that way. I hate throwing up! I think you asked a bit ago how many calories I get in a day. I'm not sure exactly, but maybe around 1100. I need to check my weight again...forgot to do it this morning. I am forcing food right now because of how my stomach is behaving. It's no fun, and I know if I have surgery, they will need to put me on TPN like last time so that my body can use it to heal.

 

For anyone with a gastroparesis diagnosis, I came across a great blog, written by a young woman (Kirby) who has GP and CIP. It's a great site- lots of photos, experiences with feeding tubes (she has a J-tube), treatments and tests, etc. http://livingwithgp.com/ It's interesting reading others' stories...for example, Kirby is the same height I am and weighed more than I did at the lowest points, and her doctor did an NJ then a J-tube. Kinda makes me wonder if someone should have stuck one in me.

 

Jen, with your gastroparesis, has anyone mentioned a gastric pacemaker/stimulator?

 

Hodaya, GO GIRL!!! I think it is so great that you will be volunteering with cancer kiddos. May your heart be blessed :)

 

Willow, I had a total colectomy just over three years ago and it was honestly the best decision I have ever made. I still have significant issues, but I am much better than I was before surgery (literally felt like I was dying). I was up to handfuls of stimulant laxatives for years, and that is not a route I would recommend. If you have CI, you have CI, and I think it's just a matter of time until you have to have surgery. If laxatives will give you relief, it's fine to use them, but they do cause a dependence. Milk of magnesia is an osmotic laxative and better/easier on the body than stimulants like Dulcolax or Senokot. You can try Miralax, but I always had big problems with gas and bloating with that. High doses of vitamin C can stimulate the bowel, and grapefruit seed extract can help wipe out any bad bacteria in there, which can help motility. I hope that helps!

 

Allie

Hi boat,

 

I am not starving myself, although I know it looks that way from what I am able to eat. I literally cannot eat any more than I am. We're talking physically unable to do it. Even the amounts I do take in cause tremendous amounts of pain. That's the problem with motility disorders that encompass the entire GI tract. Eating disorders do shut down the GI tract, but there are patients whose GI tracts quit on them without warning or reason (have I mentioned how much I hate the word "idiopathic"?!) regardless of what they eat or how much they eat. If it were as simple as eating more, this forum wouldn't exist. I eat very balanced, get lots of protein, good fats, carbs, a high level of antioxidants, etc. and all of my labs come back better than perfect time after time, and I have had the input of great clinical dietitians. It has taken years of research (and I was all lined up to start a MS in clinical dietetics before I hit another free-fall with my health) to find what I can eat, what I cannot, and the correct supplements to take. I assure you that although my intake is not the standard 2000 calories a day, my diet has been very well formulated. The more my family and I learn about motility disorders, we have come to realize that I have always had problems. As a toddler I would take two bites and say that I was full. I have always had a pathetic appetite, and now we know why.

 

Allie

Post Edited (I'd Rather Be Riding) : 2/1/2011 3:24:49 PM (GMT-7)

Hi Allie--

Thanks for the suggestions and support.  My struggle has gone on

for 20 plus years, and I only received the correct CI diagnosis (had to

diagnose myself, first, then went to Mayo to confirm it) a little more

than 2 years ago.  I can't thank you enough for being so candid and

informational.  I've read much of what you and others have written on the forum,

and everyone seems to be such great and reliable resources.  Sure wish the docs

knew to refer patients to this site, as I think it could ease a lot of

anxieties, just knowing first hand that real people are out there

with a similar perspective on this disease or similar ones.  We are the ones

living through it all day-to-day, after all!!!

Question:  My doc has said nothing about the disease progressing; she just

explained to me, after testing, that my involvement is specifically the colon, and that

a subtotal colectomy with ileo-rectal anamostosis would cure it.  She said

that people live quality lives without their colons, etc.  The surgeon is a little

more cautious, even urging me to avoid the surgery as long as possible, even

though he is supposedly one of the best at Mayo.  So, you see...my quandry...

To try to avoid surgery as long as possible, but do I then risk additional damage

to other areas of my GI?  This was never presented to me as a possibility, but I'm

hearing on the site that some people wished they had their colectomy sooner than

later, due to additional disease-- almost like the disease spread to the small bowel

over time?  Or just go ahead and have the surgery (risks and all) and increase the quality of my

life pretty dramatically, give or take a few weeks or months of adjustments.  I've

already endured years of "adjustments" to a very abnormal colon, so adjusting over

time after surgery seems very do-able.  (Like many on this site, the disease has weakened me

physically at times, but it has strengthened my endurance, psychologically in many ways, too).

Plus, it is very likely I will feel and function so much better afterward...

wow, that would be amazing!

I know you aren't a gastroenterologist, so I'm not asking you to diagnose or write

my treatment plan  !    I'm just looking for knowledgable opinions and experiences.

Others are encouraged to chime in, too.  Ultimately I'm making the decision, but I

need other opinions than from doctors who aren't living with all the day-to-day

difficulties/pain/social embarrassment/frustration we all face (or faced at one time).

 

Thanks,

(Also, even though I don't know Lizzy, my heart is going out to that woman, having

read about her on the posts.  Everyone on the site has done such a marvelous job of supporting

and helping her.  Another wonderful outcome of the forum.  Kudos!)

Willow

 

Rosemary--

Thanks for your input and thoughtfulness.  I do recall now having read your history, and I truly have a great deal of empathy and admiration for you and all you have been through.  I've had medical mistakes made on me, also, but nothing to the extent you have experienced.  You really are a strong person.  I don't know how you have coped with it all, but I can tell you have developed amazing inner strength.  (I'm sure you have your moments, too, as we're all human!)   

I spent a total of almost 3 weeks at Mayo a couple years ago getting various tests and having anorectal biofeedback training with the balloon and emg machine probe training, and was able to poop out the balloon well by the end of it all.  I still have no problems evacuating, once the stool drops down into my rectum; I have good sensation and relaxation, but getting the stool to move toward my rectum is the big problem.  I just don't get any urge, and I have to get things going with enemas.  Initially the stool is very hard, but then what's behind the hard stuff eventually is more normal consistency.  I recently had an xray that showed my colon was packed with stool, even after I used enemas to remove quite a bit of the stool.  I have a long, tortuous colon full of loops and twists, and it also doesn't move very well at all.  My sitz test markers moved fine through the upper gi and small bowel, but the minute they hit my colon, they put the breaks on and remained in my colon for days and days--not surprising, given my history.   I've had the dynamic MRI, anorectal manometry, colonoscopy and breath tests done.  The docs did not feel the defacography was necessary after the dynamic MRI views and since I could poop out the balloon.  Seems most of my problems are above the rectum, although when my symptoms were at the very worst, my poor pelvic floor was messed up, but not now.  I am able to get good relaxation and sensation, thankfully.  Still, the distention/gas/mucous/pain/frustration/cramping/etc. is getting to me.  I'm just getting so tired of my disease running so much of my life. You know the story even better than me.

Thanks for the suggestion about the article on testing.  I will definitely look it up.  I do feel very satisfied with the care and knowledge of everyone on my treatment team;  previously I have experienced some of the most pathetic care over the many years I've been trying to solve this puzzle, and now at least I know my docs "get it" and are specialists in colon motility disorders.  What a relief!

Take care, and thanks again!

Willow

Willow,

Thanks for your supportive comments. I am currently in litigation with surgeons who did the wrong unneeded surgery, done wrong, no follow up to complications, leaving me to die no referrals on for help. Getting through the whole thing was hard enough 13 months (plus even now not having a guarantee that I will never have another adhesion reobstruction is hard to live with), but so far so good since the 2007 life saving lysis and ileostomy surgery 13 months after the "2006 wrong unneeded surgery."

But this litigation drags on and on. Actually as medmal cases go, mine is moving along quite well, but the documentation and all makes me relive the whole scene over and over. Am coming down the home stretch. That is why I travel so much to get a break.

Glad Mayo straightened out your pelvic floor. Is it OK for good, or will you have to keep up treatments? At one point Lizzie's was OK, then was not, so be sure this pelvic floor is straightened out for good or if you need ongoing treatments that you do get them.

I think Allie is right, the removal of the colon and the normal fast of you small hooked to your rectum will likely work out just fine. Just be sure to do this before your pelvic floor gets messed up again as it might if you keep your colon longer. Then as she says, you can always go for the ileostomy if this does not work. That would only be 2 surgeries and if done lap, then not too much worry about adhesions.

I have met that pelvic floor rehab team at Mayo and they are wonderful. BUT in my case what even they did not understand was that my pelvic floor muscles were all scarred after the 2006 unneeded surgery and that is why those muscles would not work. It is amazing how even the most gifted docs who honestly try and approach things scientifically do no understand the devastating effects of scar tissue.

But, I am really glad that in your case you connecting with that team as they are great.

Good luck, Rosemary

willow, welcome and nice to meet you.

i think you are a good candidate for surgery and i think there's no point in waiting any longer with this. the more you wait, the more damage to the pelvic floor and (maybe) also to the small intestine (don't know about the smalls for sure).

i had the colectomy 1 1/2 yrs ago and it's the best decision ive ever made. should have had it yrs earlier.

you've struggled long enough, 20 yrs is enough. my opinion is that you go for surgery and the sooner the better.

i'm sorry if i'm too straightforward or anything, just giving you my honest opinion. i wish you all the best with whatever you decide to do.

Ugghhh, I caved and took a bunch of laxatives last night and had a big BM this morning before my day 6 x rays. I let the radiologist know and they said they would mention that in the report. Dont think it matters though because my doc didnt even mention if he wanted and x rays past day 5.

Also on day 5 they were all mainly in my ascending, with a slightly smaller amount in the transverse, and one in the splenic flexure. Lets hope I pass the pelvic floor MRI defecography next week!!