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TOTAL COLECTOMY PART 35 THREAD 14

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Posted 7/25/2010 2:10 PM (GMT 0)
good luck Jenise!!
Posted 7/25/2010 4:39 PM (GMT 0)
Hischildvalda
Yes things are working out good as far as my innerds working good.  But last night at midnight I got up to go to the bathroom and started to feel funny, so I knew I was going to black out again, so tried to move and my body would not let me till finally I got to the toilet and sat down....saw stars right away and woke up on the floor,  YUP , I passed out fell forward so have a big knot on my forehead, and hurt my right shoulder.

I have been having these constant blacking out at least once a week for over 2 years, so have to call the Neuro Surgeon on Monday , now just maybe he will finally do a MRI on my brain.

6 months ago I had to EEG'S a month apart and he said he had never seen one like that before and said he did not really know what is going on but in my frontal lobe there is a dis-connet, so hence I cant remember a lot of things....he thought I may have Eplipsy, so he said if I passed out again he would do the MRI, but he has done nothing.

I am so tired of passing out and getting hurt...one time I passed out walking into my bedroom, and my legs flew up in the air as I fell backwards and broke my leg in 3 places..

The time before that I was at the coast visiting the beach and I walked up the stairs to my motel room and went into the bathroom and blacked out, and hit the window sill really hard with my forehead, then I hit the sick and finally the toilet with the back of my head on the way down.  I had a bad cuncusion, 2 black eyes, that it travled all the way down my cheeks to under my chin....Looked like Alice Cooper...wow tht one hurt...

So I hope to get some answers soon before i break my neck...

Leslie

Posted 7/25/2010 7:39 PM (GMT 0)

Tracy,

Quick check in from off the coast of Iceland.  Give yourself a break.  You've been through so much.  Plus you are simply in nicotine withdrawal doubled with post-surgical depression,  but the important thing is that you are so much better physically.

Your doc is just typical.  "Well my job is done" rush you out the door.  Next time prior to your appt, send him a list of your questions and tell the secretary to plan appt time to allow for answers to all of them.  Be forceful.  If we are bad enough off to have ileostomies then we deserve all the good there is.

I WISH I'd been born in Greenland or Iceland. Soooo beautiful here.  and in my case I never would have been given the unneeded hysterectomy or the resultant unneeded prolapse surgery for prolapses I didn't have.  One of the shore trip guides even said medicine in these countries is done for necessity, not as big business like the U.S.  That sure struck a cord with me. 

It is light 24/7 these days.  And soooo cooool 30-70, sunny, dry, just beautiful.

No matter what your defecogram shows (and with a defunctioned rectum tell them to go easy as this could be sensitive as the unused rectum becomes friable) if you cannot push down, and cannot expel the contrast or at least most of it, then a re-hook would not work for you.  Whether they call it anismus or not, think twice before a re-hook.

I think I read something about you not being able to push out the mucous.

Hope Hodaya is doing well.  I didn't have the time to skim all the back pages.

Glad they moved Lizzie's surgery date up to Aug. 12 but still so far away.  Have they checked out her systemic issues that make intermittent ileus?  Or do they think it's intermittent small bowel obstructions from adhesions which she could have by now with 5 surgeries?

Praying I stay well.  There is some Norovirus going about on the ship, so am trying to hand wash a lot and avoid crowds while on the ship. Shore trips are great.

Rosemary

Posted 7/25/2010 7:44 PM (GMT 0)
Carlybryn, I am so very sorry to have read what you are going through. First, sounds like you have a little more than colon inertia, I suggest you also see a urologist for your bladder, sounds like you may have a prolapsed bladder (fallen) and rectum (rectocyle) too, I had a total colectomy June 2009, rectocyle and bladder suspension August 2008, Hitias hernia repair w/fundowrap 2001, bladder suspension 1 in 2000, adhesion removal in 1997 (adhesions wrapped around my colon, beginning of colon problems caused a mega colon, adhesions caused from hysterectomy at 20 years old in 1987 with the birth of my second child my uterus fell out with her when she was born, delivery doctor just pushed it back in, sewed me up and didnt tell me 4 months later was taken into surgery for a hysterectomy (got to keep right ovary that has been a pain in the ass since). I battled low back, leg, hip and pelvic pain for years, with leakage, bladder spasms and urinating up to 30 times a day, most of those throughout the night, finally I was diagnosed with "IC" of the bladder, intersistial cystisis of the bladder, which there is no cure for but installation treatments directly into the bladder is now available and relieves severe spasms, but also having "CI" even after colon is gone its attacking my small bowel bladder treatments seem to cause the abdominal pain worse. Just can not win. My point is... please investigate all your symtoms, options and possibilities before allowing anyone to cut on you, you are so young as i was on my nightmare road to no end yet. Many people never has even heard of IC of the bladder just past few years is it getting out there, many women go undiagnosed and its a very painfull disease, men can get this too. Adhesions is very painfull too, and can cause so many different symtoms,

Have you any children? any previous surgeries? or have endometriosis?

Thinking of you with prayers!

MeMa03

Posted 7/26/2010 1:15 AM (GMT 0)
Hey Jenise-Wishing you the very best tomorrow with your surgery; have been praying for you as well as your husband. hope he is doing well. Hope and pray your pain is minimal and you are back on your feet quickly. Follow all that you are supposed to do and let your body heal.

Prayers are with you tomorrow and in the coming days. Love and hugs to you:)

Judy
Posted 7/26/2010 6:21 AM (GMT 0)
Judy - thank you!! Hubby is doing great, praise God!

I'm up, can't sleep.. it's 2 AM, we need to leave in 2 hours! The bowel prep is over.. finally. I'm still going a little, and it's not clear, but they didn't mention it should be clear. I took Miralax before I started the prep, and started at 2:20 yesterday and I didn't think it was going to work! I was so bloated, felt a little sick, and nothing started to come till 6:00 pm. I think the MOM works better for me!

Thanks everyone for your thoughts and prayers!
Posted 7/26/2010 8:36 AM (GMT 0)
Jenise, i hope its not too late for you to see, i was just thinking your surgery is supposed to be on the 20 something, so it's actually today!! honey i wish you all the best with this surgery and pray for smooth recovery and best health you ever had!! hugs and prayers your way, love you!! i'm doing o.k. the first 10 days after surgery were tough, i had 3 blockages within the first 10 days, but it's over now. i'm still so very constipated even with an ileostomy..... crazy, i know... the stools is SOOO thick and very little comes out during the day. it's impossible to empty the bag when the stools is so thick and sticky, so i have a tap next to my toilet at home and i just fill the bag with water and wash it clean. i havn't gone back to work yet, but i think that when i do, i'll just take couple of bags with me to change. i won't even try to empty it when there's no tap to wash it, i'll just throw the old one and put a new one on. anyway, pear juice does help, so if i drink it, it flushes my intestine pretty good about 30 min - hour from the time i drank it. but then during the day the stools is so thick again. oh well, it's o.k, it's better than being hooked to the rectum, that's just the best i can get i guess. otherwise, i feel great, i feel i'm getting stronger every day and can do more things. and to summ it (if that's the way to say it), for me, life is much better with a bag.
Posted 7/26/2010 10:09 AM (GMT 0)
Hodaya~glad you are feeling better!!

Have you tried Closed End Pouches? Depending on how much output you have, you could get the size you need, and that way you just throw away the pouch when full...and I think they are a little less expensive:) since there aren't any clips or velcro!
Posted 7/26/2010 10:47 AM (GMT 0)
OHIO, i'm kinda new at this..... what do you mean closed end pouches? you mean they don't have an opening at their bottom? do hollister have those? or do you think coloplast are better? i think i'll take a look at my hollister catalog now, hmmmmm.. maybe it's a good idea but you know what, now that i think of it, a friend of mine, her mom had a temp colostomy and she said her mom never emptied them, she used to just throw it and put a new one. so i don't know, is there a same bag for ileostomies too?
Posted 7/26/2010 10:58 AM (GMT 0)
Normally, ileostomates could not use them for their everyday pouch, but your situation is a little different.

They are just called Closed End Pouches (no opening at the bottom) and yes, they are the same ones that a colostomate would use. I am pretty sure that Hollister has them.

Good Luck!
Posted 7/26/2010 12:42 PM (GMT 0)

Jenise, I hope this morning went well.  Thinking about you.

Posted 7/26/2010 12:48 PM (GMT 0)

Hodaya,

Do you know you are supposed to drink 3 quarts of liquid per day, 2 of which are supposed to be water?  Grape juice and chocolate also thin the effluent.  Am at sea and have not had time to read all posts.  Were your blockages from food or adhesions?  Were you hospitalized?  or were they food blockages that worked themselves through?

Pasta, potato, starchy stuff thickens.

Moma3,

Your story sounds like mine.  Unnecessary hysterectomy done when I was 38 (only a 2 cm fibroid that was thought to be the cause of flooding during SOME periods.  It could not have been the cause, as flooding did not appear during every period yet fibroid was always there.  Was likely just a hormonal fluctuation not checked for by two GYN consults I went to.)

At 50 I developed incomplete rectal emptying.  There was what was later discoved to be misread of a defecogram showing sigmoid colon blocked off top of rectum.  On legal review it Turned out it was only incidental descent of a loop of small intestine only when I push to poop.  This was determined after the fact not to be the cause of my incomplete rectal emptying.  7 procedures done in 2006, many beyond consent; surgeons paid per procedure.  I had no disease and no transit issues.  No bladder issues, yet bladder surgery was done.  Removal of my sigmoid colon caused narrowing at the anastomosis and scarring which spread along 4 inches of my colon, 3 inches of dense scar tissue on my small bowel caused 13 months of small bowel obstructions.  From the pelvic "prolapse surgery" (prolapses that I did not have) I was left by my original surgeons unable to eat and unable to defecate.  Took 13 months to find help.  So far so good and cruising.  BUT have permanent ileostomy and have to be real careful what I eat.  Praying no more small bowel obstructions from adhesions, but wrap on wood, none since my lysis of adhesions and ileostomy creation at age 51.

What country are you from?  I'm from the US where surgery is big financial business even when not needed.  The others on this forum did not meet with crooked docs, their stories involve real illness or pathology.  Mine unneeded surgery with life threatening/altering damage.  Am in litigation, but even if I win, the damage has been done.  Had I life to do over, I would have no surgery unless emergency surgery or surgery for life threatening issues.

Glad you posted, Rosemary

Posted 7/26/2010 3:33 PM (GMT 0)
thanks OHIO. Rosemary, i drink 2.5-3 litter of water a day, have been for years..... some days i don't even notic i pour too much and reach 4 litters lol, but that's o.k, it's still not dangerous. my surgeon doesn't know why i had those blockages, so he wants to do a ct to see if there are adhesions or narrowing spots in my smalls. each time i got a blockage i just stopped eating and drinking till the stoma started to produce output again and i had relief. so how's the cruise going?? hope you're having a great time!
Posted 7/26/2010 5:28 PM (GMT 0)
Hodaya, welch's grape juice is supposed to help with thick stool. Can you buy that where you are?

I still have too much watery output, but it is so much better than being constipated. I have to empty my bag approximately 12 times per day. If I eat baby food bananas, I can thicken it up, but I don't like when it gets too thick because like you said, I can't get it out of the bag. Watery output is so much easier to empty. :)
Posted 7/26/2010 6:22 PM (GMT 0)
Tracy, i don't think we have that specific juice here. i was so sorry to read about your skin problem, i hope it goes away soon. how did it happen and why? i think watery stools is the best.
Posted 7/26/2010 7:04 PM (GMT 0)
Hodaya, go buy some 100% purple grape juice and see if this helps to thin the output some for you.

As far as my skin, I believe what happened is the stool leaked right up under the stoma and burned the skin up. I assume this happened because the stool is mostly water and obviously is very acidic.

What type foods are you eating? I have been eating more foods, just very careful to chew thoroughly. If I can't chew it to mush, then I spit it out. I am very happy that I can eat yogurt and drink chocolate milk, because I couldn't do that with my colon because it caused severe constipation. LOL I have been craving tomatoes, so, the other day I just sucked on the tomato and that helped me with the craving.

Have you smoked? I have not, but still want to. It is a psychological addiction for me.
Posted 7/26/2010 8:18 PM (GMT 0)
oh Tracy i so envey you for still not smoking.... WAY TO GO GIRL! i'm proud of you! ......i'm smoking..... :/ maybe 10-15/day ouch about your skin.... i've been told by an ostomate girl i spoke with that the convatec paste is the best for sealing, maybe you should try that one? maybe it's strong enough to help prevent leaking. i eat all foods except for fresh fruits and vegies, nuts and grains, seeds, red meat, any kind of beans, dairy is really bad for me, but ice cream and yogurts seems to be o.k :) hmmmm... what else? i think that's all. all the rest is o.k. i can eat a lot more now, compared to when i was hooked to the rectum. oh, and i can eat pickles, but they cause me edema :( and i still have some edema that started 2 weeks post op and still isn't going down yet, bummer. i tried grape juice, it's a 100% natural grape juice, but it did nothing for me. i'm so confused with all the types of bags there are. i wear the hollister that has a wafer that i have to cut to the size of my stoma and a bag that clicks on it - that's what my stoma nurse recommended me, but i keep thinking maybe there's something better, but i'm not sure which types of bags to try. which type do you use?
Posted 7/26/2010 11:42 PM (GMT 0)
Hodaya, I am also using Hollister new image, 2 piece drainable bags. I called a company called Convatec and they sent me some samples. What made me call them is they have a barrier that you mold around your stoma and you do not have to cut it at all. I really liked it, but the wafer part does not have a floating flange and it really hurt my abdomen because me and my husband both had to apply tremendous pressure to my abdomen to get the bag to snap onto the barrier. OUCH I will probably try them again after my abdomen is pain free. I still have pain when my stomach is pressed and my stomach is still swollen. I hope this is normal.

I also called another company called Coloplast, but I have not tried them yet. I liked the coloplast bags because they have a really wide outlet tail and I bet this helps to empty the bag.

I think I am going to stick to Hollister for now though. This is what I ordered when I got home anyway. When I get better at changing the bag and wafer, I will start to experiment more. I am still very nervous on bag change days. YIKES

I had, mmmmm, sex with my husband today and laid on my stoma accidentally and it was okay. I am starting to get used to it and can see keeping it my entire life. LOL I am surprised when I am going about my day and don't even think about the bag or even feel the bag for a couple of hours.

When are you going back to work? I called my doctor and spoke with his nurse and she is supposed to talk to him about me staying off work for 6 more weeks, but she didn't sound hopeful. I just told her, I still have too much output, I am going to be on a bus with no air, with temps reaching 120 degrees, and I can't risk something happening to me with other peoples children on board. I mean, what is it to him if I go back to work on Aug 2 or Sept
16? We have had records highs with the heat index reaching 110 degrees. I can't stand this heat. I need to move further north. LOL

I ate baby food bananas today and my output is thicker, like mashed up peas. I guess I need to eat 2 jars a day to see if this will keep the output thicker. I also could take the immodium, but taking immodium just freaks me out....I just relate immodium to poison. HEEHEE
Posted 7/27/2010 12:07 AM (GMT 0)
Hodaya, I have been off the boards lately but wondered when you had your surgery? I had mine on June 11 and am returning to work on August 25. I was in the hospital for 10 days.

I had lots of infection and adhesions that my doctor had to cut out. I have open wounds and am using a wound vaccuum.

My output alternates from thick to liquid and I haven't figured out what foods make it that way. Also, my bag inflates with air just like a balloon. Does anybody have this problem? What can I do to stop it from happening?

I usually have to get up once during the night to empty my bag. Is this normal?

I hope that you're recovery goes well. I am sorry that you're having blockages and constipation. What has your doctor said as to why you're still having constipation? I was told that if you had a functioning ileostomy, you couldn't get constipated. Seems like nobody has all of the right answers.

butterfly
Posted 7/27/2010 1:12 AM (GMT 0)
Hoddaya,

as I said before your decision for an ileo the permanent rectal obstruction slowed the small bowel down. So without this obstruction the small bowel first has to re-learn that it needn't reduce its pushing any more. Sure it can be that your small bowel is slow either (or it has been irreversibly made slow by the rectal obstrcution) , but give you any your bowel some time for adaption. Normally, adaption of the small bowe means slowing transit down after it has begun to overtake functions that were formerly the work of the colon. That's thec ase with Tracy although she had a rectal obstruction either. BUT she had her very long and slow colon yet which could heold massive of poop insied and decompress the rectal obstrcution.
In you case, adaption of the small bowel may mean increased transit.
Posted 7/27/2010 3:06 PM (GMT 0)
Tracy, any ostomate i spoke to (here in israel) and the stoma nurse - they all say they don't like convatec's equipment for stomas, they say they're not so good, but their paste is the only thing they have that is the best. so i don't know. but i also ordered a catalog and asked for a representative to call me back. i wonder why the swelling, i don't think you're supposed to be still swollen, are you seeing your surgoen some time soon? or maybe just pay a visit to your internist to see the swelling? i just called coloplast few minutes ago and they said a representative will call me back tomorrow. i want some samples to try too. i also have lots of equipment of hollister the stoma nurse oredered me while still in the hosp, it should last me for maybe 2 mons. my stoma nurse sais she likes hollister best, but 2 ostomates i spoke with said they like coloplast's bags better. i was also SO nurvous trying to lay on my stomach, but once i tried, i saw it's no big deal and i sleep only on my stomach, just as i like to :) me too! when i'm bussy, i completely forget i have a stoma lol, like today i baked some cookies for the surgeon and the nurses staff at the hospital to give them tomorrow when i go see my surgeon for the follow up, i was so bussy with the cookies, i completely forgot my obsession of checking it all the time for leakages and stuff, that was great to get my mind off of it for a while. i don't think it should matter your surgoen when you go back to work, i know ostomates who couldn't go back to work for a whole year, cuz it took them so long to adjust to this new way of life, they took it very hard and needed a long time to go back to life. i don't know about myself, fisichaly i feel o.k, i think i would go back for 4-5 hrs/day, but i have a problem with my boss about my salary, he pays me way too low and i can't let that go on, i work there for 8 yrs now and some new girls, who started only now get a MUCH better salary than me..... WHY????? i just CANNOT accept it any more!! even if i have to find a new place of work! i can totally understand you're being nervous, but i think you'll do great going back to work, everything will work out, you'll see. you know what, i think that even if i had to empty my bag for 20/day and all complete watery, i would still be TERRIFIED to try immodium LOL, anything that's purpose is slowing the motility is making me nervous. Lori, hey there, glad to talk to you again :):) i was also exactly 10 days in the hospital, my surgery was on July 8. so sorry about your complicatons, are you sure you're ready to go back to work with all of this going on? about the air, it happens to me sometimes too, esp at night :) but i don't care. it's not much anyway, cuz i make sure i stay away from foods that cause me gas, like dairy, beans, fresh fruits. i think getting up once at night is very normal. i don't have to, cuz i'm still constipated, i don't have much output at all. my dr wants to do a ct scan to see if there are adhesions/narrowing/kinks along the smalls. if the ct is normal, then it means i just have a slow smalls. i'm so happy to just talk to you, Lori, and hear you're recovering and doing good :) Sarah, thanks, well since my colectomy on Aug 2009 my small intestine has adapted and the motility now is exactly the way it was before the ileostomy just it's easier when the rectum is not in the game causing more obstructions, it flows better w/o the rectum :) hope you're feeling better today hon!
Posted 7/28/2010 12:54 AM (GMT 0)
thanks again for the prayers and well wishes, it means a lot.

My surgery ending up as a Laparscopic, which has been easier than the open colon resection.
I'm in the hospital.. and I don't know at this time when I will be able go home. I felt pretty bad all day yesterday, and most of today, but feeling better tonight.

They had the hardest time finding good veins for my IV's.. that has been a bit hard. They had a good one going at first, but I must have bent it while sleeping and it infused (leaked) into my skin, causing my arm to blow up, and was as hard a rock. During the surgery, they put another IV into my wrist and over the wrist bone, it was so painful, I couldn't move my hand. They tried to do another one, in the right arm (left was too swollen) and the blew 2 veins. They had to call in a stat nurse to do one, and it's on the inside of my forearm, not so comfy, but better than the hand one.

So, I went into the OR at 7:20 AM and made it back to my room at 12:45 that afternoon. The surgery took awhile..

Now get this.. if you all recall, I had a sacral colpopexy (billed at over $140,000to my insurance co) to restore (pull up) my fallen organs (bladder, vagina & rectum. It was an 8 hour surgery last time because they also did a hysterectomy and a rectopexy. All those parts were better until my colon resection this past December. My uro-gyn felt that the colon surgeon either cut the tail by accident, or cut it so it was out of the way, while he did the rectopexy. to get a picture of this mesh, think of it as an upside down 'Y" . The 2 small parts of the Y gets attached one to the front and back of the vagina, and the "tail" get connected to the sacral tail bone. His plan was to go in and find the tail and reattach the ends, but the colon surgeon didn't cut the tail, HE REMOVED it!! I can clearly tell how upset my doctor is, that I have to go through this all over again.

Now for the bad part.. the rectopexy was attached to the tailbone, and I don't know what he was thinking to remove the mesh.. The reason I don't know when I am going home is because my uro-gyn surgery nicked my bowel. The have me on mega doses of antibotics and they are now waiting to see what happens once I have a BM. If it is leaking.. they need to do another surgery.. please keep in in your prayers!

I haven't been able to eat anything.. I'm on clear liquids and get nauseated several times, but the last 6-7 hours I have felt better. I do feel grumbling in my colon, so that's a good sign!

They took out the catheter early this morning, and my bladder is working, but not emptying.. so they put bck the Foley, they will try again tomorrow morning.

getting tired now.. so I'll close and check back with everyone tomorow.. Good Luck Val!
Posted 7/28/2010 1:55 AM (GMT 0)
Hodaya,

yes, your small bowel had adapted to being without colon (which means slowing transit down) but it has not yet adapted to the situation without a rectal obstruction which previouslly hindered it to work properly (which may mean a decrease in transit).At least, I have noticed after my ileo that it took several months for the small bowel to re-learn to push with its full force (in my case this force is pretty reduced anyway, but I still did notice a difference: After surgery/ileo I experienced such a thick output (although I ate very, very little!!! which would give you very liquid ouptut) that it resembled pretty hard "actual stool". I still have thick output alternating with very liquid output due to bacterial overgrowth but it is not as thick as it was.
Posted 7/28/2010 2:13 AM (GMT 0)
It's so good to hear from you Jenise! I'm glad that you are feeling some better now. My goodness, I can't believe what that surgeon did to you. Keeping you in prayer.

Did the prep today but didn't "go" much. That worries me some but since I did a full clean out Sunday then ate very little after that, it might be okay.

Check in time is 9:30 in the morning, California time.
Posted 7/28/2010 2:37 AM (GMT 0)
val, praying that everything goes well and you will soon feel like a new person. Thoughts and prayers are with you in the coming weeks.

peace and prayers
judy
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