TOTAL COLECTOMY PART 30 page 12

Tracy, your fruty cheerios have whole grain so eat on...have you ever taken Reglan to help move food out of your stomach?  But if it is just hanging out in your colon and not moving, thats not good.

So whole grains are fiber so probably not good for you.  I had that mometer test and it said my anus sphincter muscles was so clamped down and that it did not work.  Come to find out after my surgery that my butt works just fine so it was only the colon that did not work. So I dont hold too much faith in that test and dont let them try to push bio-feed back for that one, it does not work for most of the patitents, plus most medical coverage does not cover it

Good luck to you and try to have a unbloated day.

Leslie

just a qick update from me: I have been in the hospital again for five days. Had developed high fever, went to the ER and waited tehre five hours in the miserable condition I was in.
Well, I have caught another infection of my hickman cathter. This is only one month after my infection of the hickman catheter (I had in January/February, finished antinbitic therapy not long ago)
I am so sick of all of this I can't tell you.

I am waiting for my next hospital stay for an infection I am sure it will come cause my bladder and the catehter there is a permanent rich source for bacteria.

Still waiting for my C/R surgeon to decide if a colectomy is my best option...I had a manometry (failed), completed biofeedback and graduated :) Monday I passed a defecography which I was excited to discover. The severe bloating, back pain and cramping have still not subsided though due to my dilated/sluggish colon. At the end of Feb I was hospitalized when they saw free air on an x-ray/CT. Still nothing was done for me. I have appointment again with the surgeon on April 4th to discuss a further course of action. My GI doctor just says take more Miralax and do tap water enemas, neither of which are helping. In the meantime I get through life thanks to enemas, Miralax, pain meds, and anti depressants. Being a member of this forum has really helped. Its nice to know I am not alone in this. Thank to all for the support and encouragement. I am 25 years old and this is very hard on me.

Sarahann, I have been worried about you....so sorry they aren't doing anything to help you. What does that free air mean? Did it go away? Did you fail a defecogram before biofeedback? Enemas don't help me for some reason....the water seems to get stuck in my rectum and even then I can't push the water out.

Peltzier....ouch....I bet that infection made you feel really bad. When I get any fever, I am very ill and can't function. Are you better now?

Leslie, dang...I figured it was the fruity cheerios contributing to my already bloated belly. That sucks because I really enjoy the flavor of them and have been eating them dry for the past 2 days for breakfast. It has been a challenge for me to find something to eat for breakfast while I am between bus routes...well, I guess I am back to waiting until I get home again. The excess bloat is just not worth it. My husband seems to think I will get used to it if I keep on eating it....BUT, he has no idea what it feels like to get full of gas and being unable to fart. LOL HEEHEE This is coming from a man that couldn't poop for ONE day and he thought he had an obstruction. I laughed my ass off on that one..

They just said the air was in my abdomen which I guess it not good. I also had pnemotosis which is air in the colon wall. They hospitalized my because they thought my colon ruptured, or was going to. My body did re-absorb it by the next day. It is scary walking around knowing it could burst at any moment.

answers4me2 - my first/only defogram was after I completed the biofeedback. I was previously diagnosed with anismus, or pelvic floor dysfunction. I hope now that my surgeon can see the my bum works now that he can proceed with the surgery. This thing is not doing me any good by being inside me. :) The enemas are getting less effective. More and more its the water that comes back out and not much stool.

It continues to amaze me that they can put a man on the moon, clone animals, and invent electric cars but they can't figure out how to allow us to take a crap, haha.

Oh, Peltz, sorry to hear all this.

Sarahann, you are too young for all this. I hope you get help soon and can enjoy your youth. Love your analogy, They can put a man on the moon, clone animals, etc....that was CUTE!

I have BAD GAS! I sure hope I'm going to be OK. Gas and effluent is passing through my stoma. BUT I have not been eating regularly for 5 days due to doing those questions for my suit. I sure hope I'm doing the right thing. It is taking a LOT out of me. I have to now focus on doing some "normal" eating with my ileo. I was FINE for almost 3 months on a ship. Maybe I need to get back on a ship!

Tracy, your POOR hubby, no poop for a day. Oh, dear.... we are bad razzing that poor guy. Glad he's better, but I couldn't resist either

Rosemary

Hi all. I've been lurking, reading and praying for each of you (as usual). Bless you! Some of you are really going through some tough stuff. What a blessing you are to me and to one another as well, I'm sure.

Reading about the defecogram and anal manometry as well as bifeedback. Do all surgeons require these tests and therapy to be done before performing surgery? If so, I may be waiting for at least another year. Getting discouraged because the only way I can poop is by taking 4 Dulcolax (which cause terrible colon spams so I try do only take them once per week) followed by Fleet at least 24 hours later. My body laughs at Miralax, fiber and any other type of enema.

Life shouldn't be this miserable.

Thanks.

Leslie - I'll rejoice if my surgery is scheduled in three months. LOL

Why do you supposed doctors feel it is necessary to lie to patients? Do they think we are so stupid that we cannot handle facts? As I wrote when I first found this forum, the gastro doctor told me that after the colonoscopy (the first test he did) he would refer me to a surgeon if the results of the colonoscopy were normal. Uh huh.

I'm here reading and learning from your experiences and the experiences of the other members of the forum. Thank goodness for all of you!

(((hugs)))

val

val  Hey, I hope you can get your surgery sooner than that, just don't let the doc's dismiss you make sure you take a list of all your symptoms with you and a list of questions you want to ask them...just a thought, that is what I did.  Hope you get some help soon, well have to takes a shower then sit for a few as it wears me out then I am going to try to go to the store for new shoes...so we shall see if my energy is getting better or no.

Just a few tips for you in case you dont already know, with the extreme gas do not drink anything with ice in it, no straws as they cause gas.  Dont eat any pre-packaged foods or anything with sorbitol, cuz it will probably kill your innerds...lol, no soda pop gives you gas too.  Hope this help, cuz it helped me..

Leslie

Hischildvalda,

Can I ever tell you a story!!!! I don't think we've "met" as I was away on a South America Circle cruise when you joined the forum.

Here's MY story in as few words as possible: Spring 2005 started with incomplete rectal emptying. Spring 2006 Dx'd with sigmoidocele (sigmoid colon supposedly partially blocking off top of rectum.) Symptoms were divided bowel moves, but moved a ton every a.m., but took me 2-4 hours. Went on 3 consults at top hospitals. All 3 said sigmoid resection. Supposedly my sigmoid had internally prolapsed due to having a hysterectomy in 1995. Also had coincidental large benign right ovarian cyst so needed that out. So sigmoid resection, both ovaries out (docs talked me into having good one out too as I was 50), bladder surgery that was unneeded (doc faked a post-void urinary retention test and TOLD me I retained 170 cc's (was actually 66 cc's)didn't know it at the time), then without consent docs removed healthy top of rectum, resuspended my vagina from my back bone (had no vaginal prolapse), and "fixes" a rectocele he did not examine prior to surgery and that trapped no contrast on the defecogram.

Result: colon narrows in to 4 millimeter diameter where the descending colon was joined to the top of what was left of my rectum. Doc just leaves me like this. poop could not fit through a colon narrowed to diameter of a pencil. Then levator muscle which joins the puborectalis muscle was scarred in surgery. So rectum is at a right angle on post-op defecogram but before surgery it straightened normally to pass stool. I had no case of non-relaxation of puborectalis and no transit issues. All of me was working. Then I have 7 months of recurring small bowel obstructions and lose 25 % of my body weight. Docs write me up as anorexic and bowel obsessed. After 13 months of seeing 11 surgeons at 7 top hospitals nationwide (many said I was too damaged to help and sent me home to die), ONE doc steps up to the plate and hauls my distal ileum of my small bowel out of tons of concrete adhesions that were causing the small bowel obstructions and does permanent ileostomy (colon too scarred to do a colostomy). So after a year I was once again able to eat, gain nutrients, and pass waste.

I do face danger of adhesion reobstructions, but WRAP WOOD so far so good and it's been 2 and a half years. Lost my teaching career so have been cruising every since. Even went on a world cruise. Put together my own medmal case, found an atty who used to be a surgeon, and am suing like the dickens. Turns out on review of the original defecogram, I did not even have the sigmoidocele after all, yet 2 original surgeons removed sigmoid anyway. (They were on this paid per procedure deal) What really descended at the end of the push phase of the defecogram was only an incidental loop of small intestine which descended only after I'd pooped out the contrast. So was not the cause of my problem. So all I needed done surgically was closure of the space the small intestine descended through (if I even needed that) and removal of right ovary. No sigmoid resection was even needed.

And that's how I became an ileostomate. had to fight to save my life until I found the one surgeon who did the only thing that could be done to save me. And you should see some of the lies written about me by the others. In true litigious instances, discrediting the patient is the first strategy.

So, don't be surprised at anything you learn about docs. However, MOST are sincerely interested in helping the patient and MOST do the best they can. I just happened to run into BAD KARMA and am trying to turn things around. Turns out my original surgeons have about 10 suits between them. Didn't know it at the time and our state medical board covered for them when I did check them out prior to my original surgery. I could write a book and go on 20/20!

Rosemary

Rosemary....I had NO idea what you have been through. I tried reading back as much as possible but there is SO much to read. You poor thing! Good for you though taking your rights into your own hands and not just up and walking away from this. You must be a very strong woman to be able to go through all that and still have the attitude that you do. It is amazing that those docs did that to you! We had a doc out here that was removing womens uterus's after c-section and not telling them. Turned out he was doing it for no reason...just felt like it. They would only find out when they were trying to have their second or third child and couldn't get pregnant. Some people in this life I just don't get. It is a very scary world we live in thats why I believe you have to be your own advocate because no one else will be. Thank you so much for replying to me. I did have an EGD in the past. Thats when I was diagnosed with IBS. Never had any other testing just was told IBS. How you get that off of a EGD...no idea. I was just worried about the defecography and manometry. You would think I wouldn't be. So many docs have seen me down there that everytime I see a doc I feel like I should get in a gown and pull my pants down. I have been through 3 IVF cycles, several vaginal surgies, a barium xray and of course my deliveries. The rear is just a whole new thing for me so it kinda freaks me out a bit...KWIM?

Leslie....I am SO SO SO happy that you are doing so well since your surgery. It must be such a relief to feel "somewhat normal" again. Isn't it funny how people take something so little as being able to "go" for granted. So many of my friends when I tell them something are like "really you sometimes go for weeks without going" They are so amazed. I hope you continue to do well.

Tracy....thank you as well for getting back to me! Have they told you why they think your sensation is off? Is that something that biofeeback could even fix? That is what I feel the issue is for me. I don't know I even have to go to the bathroom until I start cramping. I NEVER get the normal sensation to go. I used to before I had this last surgery for my rectocele. It seems like there is something up there blocking the stool and unless my colon starts cramping and pushing it into the rectum I don't know I need to go. So what are the doctors planning on doing for you?

***By the way...did any of you have to do a prep for the manometry or defecography? Everything I read online says that you are told to do enemas or something to clean you out. The nurse at the doctors office told me there was no prep. I find this hard to believe because if I am backed up with stool couldn't it mess up the defecography? I wonder if I should call the radiology department. I have my test next friday. I have to drive 2 hours south because there are no hospitals here that do the tests. I would have though somewhere in Chicago would but guess not.

Hopingforanend. I think they made me do 2 enemas 3 hours before my appointment....hopefully somebody else will come along and clarify....I have had so many tests I can't remember exactly what I had to do before each one.