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TOTAL COLECTOMY PART 25

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Posted 9/10/2009 6:17 PM (GMT 0)
Hodaya I am so sorry the TC didn't fix the constipation. That just seems crazy! I am sitting here worrying about going to much after surgery maybe I need to be worrying about the opposite. Have you tried all different types of foods? Maybe there is some kind of food that could help trigger bms. I know it would be terrible if you had to start taking lots of meds again to go! I am just so sorry this has happened. I know you are very discouraged. You are in my prayers! By the way I like the signature on your last post. The other one that was kind of slanted was difficult to read......I must be getting old! LOL.

Lizzie how are you doing today?

Jen
Posted 9/10/2009 6:54 PM (GMT 0)
well, i don't know, i had 2 very small bms now, 2 spoons each, i'm definitely slowing down in quite an early stage after surgery. i hope it's just little setbacks and everything will improve. Jen, i really think that you have a better chance than me, cause not having a PFD is a MAJOR plus, trust me on this one!! all the statistics show that those who had the TC for CI but don't have PFD had much better results than those who had PFD in addition to the CI. for me it feels like no matter what or how much you cut, it'll always stay stuck just above the rectum and will have trouble getting into the rectum. but you don't have this issue, so i truly believe you have a much better chance for a successful outcome. of course, i'm no dr and i havn't ever seen your medical file, nor have i ever seen you, but just the fact of not having a PFD gives greater hope in any case. besides, i don't regret having the surgery, cause the colon was definitely not needed anyway, my stools is very solid w/o it, i feel better, at least at this stage, MUCH less swollen and bloated than before the surgery. at this stage i still feel A LOT better than prior to surgery. it seems the stools is already having hard time entering my rectum and even when some of it finally does, my rectum is having major trouble pushing it out. all i know is that things are bound to continue to slow down, so if it's like that now, i'm very depressed at thinking what it'll be like in few mons from now, or a yr or two. well i know, my mind is running through endless thoughts and fears and maybe i should relax, but i can't! sorry. well isn't the signature better like this? lol
Posted 9/10/2009 7:28 PM (GMT 0)

Hello all....

Feeling better this after noon. The nausea meds are really working. I only ate a few bites of broth and crackers with a few pieces of candy for lunch, but it has stayed down. i really think I have just been battling a flu bug or virus. I still have this darn dore on my tongue, but its starting to get a little better. I talked to my surgeons office today....they had to change my surgery date. They wannted to move it forward to the 24th....a big part of me wanted to say yes, since I had 4 changes last night and my skin is horrible this week, but I also did not want to miss my girls weekend in Milwaukee for the concert. So I opted for the 29th instead. No biggie....one more day is nothing in all of this I have been through. His nurse has been so friendly with me....I know now she definately had  "talking to" and its refreshing to get back some empathy. So KAREN, I have missed you, and yes......reversal is end of month!!! Any news on yours????

Hope you all are well.

Posted 9/11/2009 10:00 AM (GMT 0)
Hodaya i LOVE your sign-off - very creative !! I am so sorry you are not feeling shakehead completely better - the PFD is probably the thing - like with Janie???  I dont understand PFD but it is a complete nuisance - i hope something comes along that will cure it...

I do hope the reveral goes to plan Lizzie - i can't believe you are having problems so much with the leaking and stuff- what a nightmare.  I don't know when my reversal will be - i am still waiting to hear - probably towards the end of the year no doubt.  part of me is not looking forward to it as it will be constant toilets or uncontrollable and i dont react well to anaesthetic.  i have watery stool a lot - especially if eat hardly any carbs.  will cross that bridge when i come to it.

Good to hear from you my dear friends.. smilewinkgrin xx

Posted 9/11/2009 11:42 AM (GMT 0)
Hi everyone,

Karen, I was trying to look up some of your older posts, because reading your signature - it sounds a lot like ME! I'm 48, do not have IBS, have had major repairs to the whole pelvic floor, had a rectopexy to repair my muscosal prolapse, after those repairs I couldn't have a BM... without obsessive straining, recently had a colonoscopy, they found I had a twisted and redundant sigmoid colon, then had a sitz marker study - passed only 3 over 5 days, and had 13 stuck in the sigmoid, where they diagnosed me with colonic inertia, but feel that it is mostly due to the blockage, I also had a defecogram done (2 - heading for #3 next week) that found a sigmoidocele... so I am scheduled now for a sub-total colectomy, where he is planning on removing the sigmoid and part of the descending colon. If you finished reading this - thanks!! Now I have a question, in your signature I see that you had a resection.. but what happened after that that caused you to have more surgery and a Loop Illeostomy?

Lizzie, so glad you're feeling better! What do they think the sore on your tongue is??!

Hodaya, gosh.. with all my pelvic problems I sure hope this doesn't happent o me - but this is the feeling I have NOW.. everything feels stuck and can't get to the rectum! Hope you keep recovering!
Posted 9/11/2009 1:18 PM (GMT 0)
Hello Jenise

I spent nearly 12 years and four hospitals trying to get to the bottom of what was wrong with me...yeah i dont think i  had IBS at alll - they just didnt know what it was then.

I only had a transit study in 2006 and even then i was told i was probably too young for surgery?!! aghh!  My markers were mostly scattered around the ascending colon.  That confirmed i had slow transit constipation which completely amazed me as i 'went' everyday with the help of glycerin suppositores - a box a day at least. Though it would take me 1 -2 hours in the morning and another hour in the afternoon to feel like i have gone to some extent, plus i felt i had to manually digitate inside my rectum.  

So cause he didnt help me in 2007 i went back to my local surgeon who referred me there.  He did an MRI which showed the kink at the top of the rectum and pushing down in the 'pouch of douglas' the area between vagina and rectum - we all thought yes this is the answer - this confirms why i feel obstructed all the time even though nothing is flopping inside the rectum.  So we agreed he whip out about 12 inches of sigmoid. 

Anyhow after the surgery my bowel just would not work and after several days i was given bowel prep to get it going and after several hours it worked - the surgeon was amazed my bowel was not working. 

Anyhow to cut a long story short he referred me to a Professor at the The Royal London Hospital in London who again gave me the transit studay along with all the other GI tests confirming slow transit. He said that in patients with CI just doing a segmental resection does not help.  In my case it had exacerbated the slow transit for some reason.  I did plead for a subtotal but he would not do it as in their years of experience with tests on CI, patients do not fair well even after leaving even a small amount of bowel ( they even took a bit of my rectum away at the top due to the previous surgery).  So i trusted him and because of previous surgery they thought best to give me a temp bag to allow the join to seal properly. 

it was a nightmare time from 2007 where I had to take over 30 senna tablets a day and even that didnt help me. My life was worse than ever.  Then in March 2009 i got the tc done and life is good. 

 Though i note your markers are all in the sigmoid?? It is worth still have the subtotal - you could fair ok afterwards and if not then dont worry - having the whole bowel out is the best thing for slow transit and is the only thing that works - nothing else does.

Hope the response not too long winded.  Anything else please ask wont you.

Posted 9/11/2009 2:34 PM (GMT 0)
Karen, how has it been having your loop ileostomy? I am going to have a loop ileostomy during the summer due to inability to have a normal bm. I have anismus or nerve damage and colonic inertia...I take laxatives, but my main complaint is it is nearly impossible to get the bm out. I use enemas and suppositories, but always have to disimpact myself because I can not push down to haVE A BM. I can push, but this does not produce anything. I rarely can even pass gas or water through the rectum the normal way. I am miserable to say the least and spend 1/3 of my waking hours trying to have a bm. I had botox injection into the rectal muscle and it didn't help and may have even made this issue a little worse. Were you like this?
Posted 9/11/2009 2:44 PM (GMT 0)
Oh crumbs how long have you been living like that? Do you mean this summer or next?  The sooner the better definately!

Yes life is 100% better with an ileostomy - will yours be temp or permanent?  I would never go back to what i had before - even if it meant staying with a bag.  You have plenty of time to adjust - i had several months thinking about whether i would have a bag and i have surprised myself at how easy i adjusted to it although it was a bit gross to start off with.

It takes time getting used to changing it and stuff but you will be so much happier and get on with your life without worrying about the next bm!

No i didnt have anismus diagnosed - mine was all to do with obstruction and slow transit which went undiagnosed for years - even when i had a little of hte bowel removed (which exacerbated the transit) i could actually feel the obstruction was gone. However the CI 100% worse.

all the best.

Posted 9/11/2009 4:22 PM (GMT 0)
Hi Karen,

Good to see you back here, and I'm so glad you're feeling well. Hope you don't have to wait too much longer for reversal, but at least it seems you're handling everything well!!

Just curious, and forgive me if I've asked before, but do you think the STARR procedure was worth having? I had my TC in March, and I'm still having issues. Some days it's not too bad and I can go several times, but other days I start feeling backed up as soon as I eat and can only get small amounts out every 15 minutes for hours. On those days, I never feel empty until I either use an enema or drink prune juice. Sometimes my rectum feels so full and so sore that I could just cry. It's a worse feeling than I used to get in my abdomen when I didn't go for several days.

I have a rectocele, but before my Dr. does any thing about that, I'm having biofeedback again. So far I haven't noticed much difference, so I don't know what's next. Most of the time I feel like it's my pelvic floor problem, but sometimes I can tell things aren't moving as quickly as I thought they would...or as quickly as they did the first 8 weeks. I was going 20+ times a day, but at least I always felt empty!!

I am so tired of this, but I know everyone else is too. At least this is a great place to vent!!

Hugs,
Janie
Posted 9/11/2009 7:26 PM (GMT 0)
Hi again!

Karen, thanks for all that info.. again, there are so many similarities! My sigmoid is collapsing into the pouch of Douglas, causing an obstruction, I just hope that the sub-total will work... I do still have a prolapsed rectum, but as of today - the doctor does not want to touch that area for fear of damage and my having o have a permanent bag (I had my prolapses repaired with mesh).. but I go Tuesday for another defecogram to see if they should risk it now or wait.

Janie, I know there is some way for them to see if things are moving through the system like it is suppose too, maybe you should require about that?

So, I was a little annoyed that the prolapses sigmoid was missed on 2 previous test (defecogram & pelvic MRI), but apparently it isn't uncommon to miss things! I was watching medical mysteries and this one women was sick since a child, had either diarrhea or severe constipation. she saw doctor after doctor and no one ever found a reason for her being so sick. Long story short, she had shortness of breath, and went to the hospital, found her heart muscle was weakened, and had to have a defibrillator put in. Then something again happened with her digestion and she went to another doctor who did a test to see her digestion. It turned out she had a 4 inch opening in her diagram that her colon squeezed into. They determined she was born with this and that because it was in her chest cavity - it compressed her lungs (causing the shortness of breath) and most likely was the reason her heart muscles were ruined. The thing is - they inserted the heart defibrillator and it was just 2 inches away from her protruding colon! No doctor ever saw this, even when they did her heart surgery! That's a little unnerving!
Posted 9/12/2009 9:58 PM (GMT 0)
that's a pretty amazing story about that lady, Jenise. i must say i always have that thought that maybe there's something the drs are missing.. that thought is always there, making me worried. well i'm happy to report that things have improved in the last 2 days and i had bms again. my bms are still incomplete, but at least they're back. i have 1 bm in the morning that is divided to 4-5 small ones that comes every 10-30 minutes.. yes it's ANOYING, but it IS better than not having ANY bms at all, so i'm thankful for those. then maybe in the evening i have another 1-2 small ones again (it's rarely more than 2-4 spoons) all in all i feel much better. on the healing part, my healing is amazing! i'm not taking ANY pain meds any more.. i just don't feel like i need them any more  all i want is for everything to just keep flowing, for all of us! blessings everyone!
Posted 9/13/2009 3:21 AM (GMT 0)
Hodaya, I am so glad your bm's started up again. That must feel wonderful. I am keeping my fingers crossed that you continue to see improvement...YAY

Jenise, OMG I saw that episode of mystery diagnosis...I couldn't believe that poor woman had to live 50 years like that. HOW AWFUL! Did you see the eisode with the little boy that couldn't have a bm for weeks at a time? That is when I learned about hirsprungs disease and I just KNEW that was what I had. But, my doctor says I don't!!!! I wish I did though because there is atleast a treatment for that. LOL

Janie, I feel so bad for you. I can't imagine having the total colectomy and still being "constipated"! Constipation really is not a good word for us, is it? We are beyond constipated. Is your PT person the one that is pushing fiber? Because fiber makes me soooo much worse....I don't think fiber is good for us with colonic inertia...Have you tried botox? I had that, but it did not help me, but it might help you.

Karen, my doctor plans to perform a temporary loop ileostomy! He said it may help the rectal muscle to relax. He told me with having colonic inertia and anismus, that there is no cure. Have you had another defecogram? Because I would be very leary of having a reversal if you can't push the bm out. I will probably see a 3rd colorectal doctor because 1st colorectal doc recommended a total colectomy...the 2nd colorectal doc said the total colectomy would not help me because I can't push even water out of the rectum..Maybe another opinion will help me to make the best decision. I plan to wait until the summer of 2010 because I am a school bus driver and I am off all summer. But, I have more bad days than good and may be unable to wait that long. What would you do? Was your ileostomy planned or an emergency? I am having a hard time with having an ileostomy as an elective surgery.

Tracy
Posted 9/13/2009 3:54 AM (GMT 0)
Hi everyone,

Hodaya, good for you girl! Didn't you say you were on antibiotics? I know alot of people say antibiotics cause diarrhea, but they have always made me constipated, even since surgery. Maybe you had some left in your system and now it's finally gone. Whatever reason, I hope you keep going and going and going!!


Tracy,

It is very discouraging to have had surgery and still have problems. I DO go, but just not enough. Yes, my PT pushes fiber, but it always made things worse before surgery, and it still does, I think. I'm not eating nearly as much as she wants me to, I just can't.

I'm not sure what my problem is. The biggest problem is that I can't seem to push everything out; sometimes I go and feel sort of empty, but then 10 minutes later I have to go a little more....and that can go on for hours. Other times I feel the most horrible pressure in my rectum and I just can't get anything out without an enema or prune juice. Other days I can go some after each meal and things move through me ok. I'm going to do a little more biofeedback; my doctor wanted me to do it for at least 8 weeks (I've only done 3) and then I'll see what he says. I would like to have a test to see if my small intestine is working ok. I can imagine trying to make the decision to have a bag; I wonder if it will come to that with me? I haven't tried miralax since surgery. Nothing worked before, but I wonder if Milk of Magnesia or Miralax might work now. I take metamucil every night (but only 1 tsp full) and it does help me go in the morning, but I have to drink a cold coffee drink to really get things going. Regular coffee doesn't help at all; I really can't figure that one out!!

Janie
Posted 9/13/2009 5:12 AM (GMT 0)

Hi Girls,

It feels like forever since I've talked with you; I've been soooooo busy now that I am back to work it's totally crazy but I LOVE it:) My husband is worried sick because I won't slow down and I'm not getting enough rest but that's the life of a teacher or shall I say my life; I get to school around 6:45 am and leave around 6 pm.  Then I do school work after dinner until almost 11 pm. 

Anyway, I've missed all of you.  I quickly skimmed the posts to try to catch up. I'm glad you're doing better Hodaya, and I love your picture:)

My goal for 2 summers from now was to have a convention for all of us at a nice hotel at a beach.  I wanted drs. there for those who haven't had the surgery yet or are getting reversals, ostomy nurses and suppliers, etc.  I thought this would be an awesome way for all of us who could make it to finally meet each other.  But now my plans are on the back burner for a while until this kidney issue is taken care of.  What do you girls think though??????  I would love to meet you and I know I can get representatives and drs to speak; I think we should put this on the regular forum and see what people think.

Lizzie, I hope you're having fun in NY:)  Enjoy your girlie weekend before your surgery.

Janie- I pray that you feel better soon.  I feel so badly for you.  I hope that your dr can help you.

Jen & Jenise-enjoy your vacations and I'm praying for you always.

Marisa & Christy-Hope & pray you are doing well.

Tracy-Hang in there and I'll continue to pray for you this school year.  I hope you have a good year and you can stay healthy and comfortable enough to make it until next summer.

Karen-Glad to hear you are doing well, hope you get your reversal soon.

I will be getting my stent in on Friday evening; the dr is coming in after his appts so I won't have to miss too much school(just a 1/2 day) and I can heal over the weekend.  He has been soooooo good to us.  He called my husband and talked with him for a long time because my husband couldn't go to my appt with me and he also called me yesterday to answer some questions I had. I just hope and pray that this will work and hold me over until next summer.  He's not quite sure what he's doing next summer yet.  He's an expert with the DaVince machince but he won't use it on my stomach due to all of my previous surgeries, though he may try it on my back, if not he will cut it open.  Or he may do a "slice and burn" procedure but he won't know about that until I have a special ct scan to check for veins and arteries in the ureter.  So right now it's a what and see thing; I really don't care as long as I can work.

I absolutely LOVE being back to school.  I missed my kids soooo much. I looped to second grade and have most of the same students as well as 12 more including the classified students whom I adore:) It's a very big class (24, I'm used to 16 usually) but I have lots of great help and my class is full of beautiful children; how can you not love a 7 yr old? :):)

I really need to go to bed it's after 1am and I got to get up at 7:30 to go to church; I'll be taking a long nap tomorrow:)

Miss you all; Love you and always thinking about you,

Judy

Posted 9/13/2009 11:16 AM (GMT 0)
Hi all

Firstly Janie it is worth having the STARR.  If you have mucosal prolapse then it needs sorting - i def noticed a difference in the rectum after having it - but of course i did have some bowel stuck between the rectum and vagina which was not diagnosed at that point AND i had colonic inertia which no one realised.  So i would say - get everything done!!  At least you have covered all your options - and you know what is going on in your own body....i STILL felt some sort of obstruction after the STARR ...but it was my bowel - which is now GONE! 

Tracy -  if life is hell right now electing for the temp ileo is the best way forward i am sure. I wish i had mine done sooner and was given the option sooner.   it is a scary decision as it was for me - i had several months to think about it - my surgeon said i could end up with one permanently because in his experience people with no bowel become incontinent.  I dont care anymore it is nice to have my life back again after 12 years of HELL.  When it comes to having it reversed i will see how it goes and take each step as it comes.  No i havent had defragram since my TC - the GI studies showed everything seemed ok in the rectum however i only managed to push out 50% of barium but they didnt seem to think that a problem at the time.  Good luck and hope you get it sorted sooner rather than later.

Jenise crumbs so you have a full prolapse?  I just had mucosal prolapse.  If you have CI then having it removed has to be the best thing - whats the point of having a bowel that dont work it is misery!  Hope all goes to plan.

Hodaya so glad all is going better. xx

 

Posted 9/13/2009 12:06 PM (GMT 0)
Judy, you sound so happy with your work :) i'm so glad you're enjoying it so much, and being able to keep a good spirit is also very good for healing, i too really hope to be back to work soon, maybe in couple of weeks it'll be o.k. gosh i wish i could also meet with all of you, but i live so far away :( it can be so much fun. i hope you feel better judy, and you never have to miss work. Janie, i'm exactly the same as you, actually! my bms are incomplete and even if it "feels" like it was complete, after 10 minutes, maybe a bit more, i need to go again.... it's never a one big amount and over with, it's always a tiny bit each time and it lasts from morning till noon. the only difference for me now is that it moves on it's own and i don't have to do maneuvers to make it come, it's just different as we said. and most of the time i feel something is there, but not completely there enough to actually come out and THAT'S a very uncomfortable feeling. from all you've described that happened to you post op, it seems i'm even worse, cause you at least you had it better for the first 2 mons, and me, i'm only 4 weeks out and it's already very formed and slow. it's discouraging. i can't believe that even a surgery like that can't solve our problem. i'm tired of this.. TOTALLY!!!
Posted 9/13/2009 1:18 PM (GMT 0)
Hi Ladies,

Judy, so glad you stopped in to say hello! Sounds like you're super busy, and I can tell you just love your children. Having a great teacher makes ALL the difference, and I hope you never tire of them! So sorry that you have to have a procedure on Friday - hope it goes well and works till next summer!

Karen, thank goodness I do not have a full rectal prolapse! I "had" a mucosal prolapse which was corrected 6 months ago via a rectopexy (lap procedure). It is 90% better as far as protruding, however, my rectum wasn't pulled all the way into place and still sags internally (which will eventually become another mucosal or full prolapse) plus I still have a and I still have a rectocele as well! Surgeon doesn't want to fix it now.. because of the risks (but is double checking with another defecogram). The whole thing is a little more complicated now because of the mesh ... so "if only" they saw the sigmoid prolapse prior to my last surgery, I would have had it all done at once, but too late and now I am going to have a sub-total colectomy. The doctor looked at my sitz marker test, and diagnosed me with CI, but feels that it is due from the partial obstruction.

Janie, I KNOW that feeling all too well, and I am wondering if your rectocele is causing some of this feeling. It's like an internal pocket, where stool does get trapped. Even though I had surgery to repair this, I find I still often have to "splint" - to feel more empty. (I have to push on the perineum area to fully empty). I think I would try the MiraLax too... it could be just what you need to make your colon move a little better.

Hodaya, it must be so frustrating to feel constipated after you just had major surgery to correct it! I guess I'll be happy to use MiraLax forever it it means I can go "normally" and get rid of my bloat and stuff. I guess after reading this forum, it seems that most are happy they had the surgery, even though things aren't 100% "normal". I think maybe we can't ever be 100% normal, because normal people aren't missing part or all of their colons.

Tracy, I understand how important your job is, but you sound like you are suffering so much! I just would be concerned that more damage could come by waiting...? I didn't see that episode with the boy... but I swear sometimes I think we know more then doctors.. not always - but sometimes!

Lizzie, hope you are having a great time.. I know the surgery must be on your mind !

Jen, our time is fast approaching! I can't believe that in 5 weeks I'll be heading to the hospital! I'm scared.. but do want to get this over!

Marisa & Christy - hope all is going well for both of you!

Thinking of everyone here often.. feel it is a blessing to have this forum!

As for me, I go Tuesday for the dreaded defecogram.. and I start my pelvic floor therapy. I was thinking about how many of us use and over use laxatives. I am hoping that because I almost always used enema's and the fleet - that additional damage wasn't done. My GI doctor said he was glad to hear that those were what I uses.. as they were the safest. For years and years I worried about damage.. and now I can only hope that once surgery is done, I'll be close to normal as normal can get!

Hope everyone has a wonderful day!
Posted 9/13/2009 7:45 PM (GMT 0)
Hello all,

Hodaya,

Yep, we do sound alike.  I was lucky though, because I did have a window of feeling "empty"....or maybe that was a curse, because I know how good it felt to really go alot!  I'm not sure what the answer is, but at least now some things work to get me going.

Jenise,
I think you're right; maybe we can never be 100% because we are so different than most people.  Having no colon is a pretty big deal, I guess.  I hope you have good luck with your surgery; I doubt you'll be sorry because even if it isn't perfect, it is better.  I get down sometimes because I can't go out at night alot like I used to; night time seems to be my worst time, especially if I eat a normal dinner.  When I'm home it's not a problem, but going out with friends is always an early night.  We were supposed to go on a cruise in October, but  backed out because I just can't eat the way I'd want to.  Since we moved to Florida 18 years ago we've cruised alot because we're only 10 minutes from a port.  I would love things to be normal enough to be able to cruise again and enjoy it!

What kind of pelvic floor therapy are you having?  Biofeedback?  And how much of your colon are they taking?  I hope and pray it works for you!

Just stopped by for a minute, hello eveyone else and hope everyone is having a nice weekend.

Janie

 

Posted 9/13/2009 8:01 PM (GMT 0)
Janie, I love to cruise too, and even though we are closer to Tampa port - we always go to Ft. Lauderdale or Miami because of the ships they have are new there. I do hope that it just takes time.... the ONLY other person I know who had this surgery - is currently 57 yrs old... and she had it at age 29, and I personally have spent holidays and such with her and she CAN eat - anything! She had the rectum and entire large colon out and has what I believe is an internal bag.. not sure of all the details as she told me them years ago, but we did talk a few weeks ago, and I know she has a stoma and uses a tube to empty..??

I am not sure (or should say the dr. is not sure yet) just how much.. but all of he sigmoid and part of the descending was discussed at pre-op visit. He will not be taking the whole colon out, but from reading here.. it seems as though the recovery is no different, and many end up having to go back and have the rest removed. I sure hope not.. but doctors do tend to be conservative.

The pelvic floor therapy is because I have pain since my surgery when I am "with" my hubby, and my pelvic floor muscles are weak.. so they are targeting the muscles and something called myofascial..? that has something to do with "trigger pressure points" which I guess is a bundle of nerves! Oh my.. no modesty in our lives is there.. I go Tuesday, so I'll know more of what they are doing and if it is actually bio-feedback. I had therapy years and years ago after my last son was born and I damaged my birth canal (which is WHY I have all these issues today).
Posted 9/13/2009 8:03 PM (GMT 0)
I have another question.. what are post op visits like? is it at 2 weeks and then again at 4 or 6 weeks? what do they check - just the incisions?
Posted 9/14/2009 1:28 AM (GMT 0)
Hey everyone, I just spent three long days painting my house!! We have lived here for two and a half years and finally got it painted. Geez, I have muscles that ache so bad that I never knew I had. LOL. I am looking foward to going back to work tomorrow.

So how are we all? I hate hearing that so many of you are still having issues. I am doing well. My bleeding has quit for now and will get my lab work back tomorrow to see if there is any more bleeding issues. As long as all the blood levels are good then I should be ok. I have about ten bms a day but a little at each time. Belly feels great though. Finally off my pain meds. Now my leg on the other hand is still swollen from my dirt bike accident. Couldnt get my boot on this weekend, so no riding for me yet. Maybe its a sign!!

I wish there was a way to help everyone. I have accepted the fact that my body is going to messed up for the rest of my life and that I will never have normal bms ever again. Its just something I try to regulate with diet, stool softeners, and juice. If I have a slow day I take stuff to go more and if I go a lot I am just thankful.

Well, ready for another new week. OH JOY!! Hope you all have a good one.

Love ya all, Marisa
Posted 9/14/2009 1:58 AM (GMT 0)
Hello everyone! I hate to hear that so many of you are having trouble.
Hodaya, I am especially concerned for you. Do you think they made the connection site too narrow. I have heard of this. I am suprised you are able to eat so many things. I cannot eat anything that is a carbohydrate (starch). They say that my stomach was permanently damaged and for two years I havn't been able to eat any bread, cakes, pastas, rice, oatmeal, grits, potatoes, bananas or anything like that. I was hoping it would be reversed with the surgery but no such luck. I am only eating chicken, shrimp, fish, eggs, green beans, zucchini, asparagus and broccoli. I was eating chocolate but found out that it makes my body swell up. Milk products are doing the same thing for some reason. I am swollen with extra fluid (4lbs.)now. I am really waiting to hear what your doctor says the next visit.

Marisa, from dirtbike riding and wrecking I may add, to painting. What else can I say!!!!

Judy, I will be praying for you on Friday. It is good to hear that you are so happy to be back at school with your adorable seven year olds!

Jenise, I hated the defectogram. I will be thinking of you on Tuesday. How many have you had to have at this point? I have lost track, are you having surgery this month or is it Jen?

I saw the episode of Mystery Diagnosis with the little boy with Hirsprungs Disease. I immediately thought this is what I have. I went straight to my doctor and said test me for this now. Of course I didn't have it! But why did I have to wait a lifetime to even hear of such a disease and then have to ask for it. Why hadn't they tested me for it before. I had all of the symptoms.

Janie, how are you?

Lizzie, hope you are having fun. You only have a few weeks left!!

Everyone else, I hope you have a great week!

Christy

I would love to have a convention where we all get together! How awesome would that be!!! Let me know the time and place!!
Posted 9/14/2009 8:14 PM (GMT 0)
darn i'm really bummed y'all will have a convention and i'm not able to come :o( today was a good day, i had a relatively larg bm in the morning and it helped me feel good for at least 3 hrs. i have about 5-10 bms a day, they are quite formed and sometimes very very formed, like bms a normal person would have.. isn't it strange? some days are better than others. i need to adjust. what scares me is when i go back to work and to my normal activities i may slow down significantly, cuz now it's like as long as i'm at the comfort of my home and have time to concentrate on it, i manage to have bms, but when i'm out and busy, i will suppress it w/o even noticing i'm doing so. i hope it won't be like that. Jenise and Marisa, you're both right!! we all must realize we can't be completely normal again and eccept this fact. so as i said, i'm trying to adjust. and actually, even if the bms are small, but as long as things are coming out instead of staying in, then i'm happy. just let it keep flowing.... YYYAYYY Marisa for getting off the pain meds!!!! so glad for you!! surprisingly i've been off of them for at least couple of days, it's amazing i don't need them at such an early stage, isn't it? i sure am happy about that. anyway i'm so glad to hear the bleading is over and you're doing better! good for you! Jenise, i really don't envy you having to do that defecogram.. it's one of THE worst tests there are! hope you make it through as easy as poss. about the woman you mention with the pouch, sounds like she has a K pouch. very few surgeons are trained to do this procedure. it's an old method and is not commonly used these days. i truly hope everything works out for you. don't be discouraged, lot's of women with PFD underwent the surgery and for many of them the surgery overcame the PFD, so maybe it'll be like that in your case too. in most cases the surgery does overcomes the PFD. for me, i guess my small intestine is also slow, so maybe that's why it's the way it is, i don't know. Christy, thanks so much for all you care!! my anastomosis site was checked about 2 or 3 days post op and it looked great.. and i AM starting to do better now, so maybe things will regulate again (i'm hoping). i never had probs with srarch, not before surgery and not now. it seems my stomach is o.k with that. i really feel for you tho, for not being able to eat all of these foods, poor thing.. i don't know how i would live w/o them. as for dairy, after surgery i unfortunately found out i CAN'T eat them either :o( the smallest amount gives me THE worst hearburn, it's totally unbearable. so i don't touch'm anymore. anyway, i think i'm starting to do a bit better. if it keeps on like this, then maybe i can live with it. the way it's been in the last 2 days is not so bad, i can hadle living like this. maybe in the long run, if things don't work, then i can have another defecogram and see what's goin on there. i hope you keep getting better and better and feel good! keep a good spirit everyone!!!!! ;)
Posted 9/15/2009 3:00 AM (GMT 0)
Hodaya,

I'm so glad you're having more luck!! I think sometimes we worry so much about things slowing down. I know I am obsessed sometimes!

I definitely notice that I have better luck on the days I don't work. I'm not sure if it's because I'm moving around more when I'm home, or just being nervous about having to go at work. How long will you home from work?

Hope you keep poopin!

Hugs, Janie
Posted 9/15/2009 4:09 AM (GMT 0)
love you Janie! yeah!! let us all keep poopin!!! i'm thinking of getting back to work in about 2 weeks.. i feel ready as far as healing is concerned and it's only a desk job, so it shouldn't be too hard. i'm gonna try 4 hrs at first then gradually increase it. ♥♥♥HUGS♥♥♥
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