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TOTAL COLECTOMY PART 22

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Posted 4/3/2009 12:18 PM (GMT 0)
Hi there!

Lizzie- I feel you! I am so desperate for an answer that will actually work! I have tried everything, and have had every humiliating test done over and over. Modesty is out the window. Supposedly this biofeedback is supposed to be pretty good for pelvic floor dysfunction- so they say. I've yet to see this actually happen. I'm trying for a second time just to "be sure" it fails before moving on with a surgical option. I, like you, am not holding my breath. I am just keeping people happy and biding my time. So far, I think it is stupid. It has not helped one bit. I think my "case" is fairly severe. On defacography, I was not able to get the contrast out at all until the next day (and it wasn't all out for 2 days). Why would it work a second time if it didn't work the first time, I mean, is this magic biofeedback that they don't show you until the first round doesn't work? I am so ready to be able to wake up in the morning and not look like I'm 5 months pregnant. So, you are starting the home biofeedback, is that right? I would like to hear how that goes. Good luck with it! What other options are they looking at for you? I am going to look up the BCIR procedure you're talking about. That sounds interesting.

Janie- yes you are right, I still have my colon. I have not had any kind of surgery yet. Just botox injections. A colectomy would not work for me because I don't have any problems with motility like colonic inertia. Everything moves through just fine until it gets to the rectum. Then the muscles can't relax enough to let everything out. Also, the pelvic floor muscles are underdeveloped and very weak, kind of confusing to me how they are too tight and weak at the same time?? Also, I was reading one of the notes that my doctor wrote (he gave them to me to take to biofeedback) and when I had an exam under anesthesia, he did a proctoscope and said there was no peristalsis in the rectum. I'm not real sure what that means. Basically to answer your question, my colon seems to be fine, it's more a problem with my rectum and sphincter.

I hope the lomotil works for you! I think it is supposed to just slow your intestines down. So hopefully it will just slow them a little, not too much =) Good luck!

Lauren

Posted 4/3/2009 12:25 PM (GMT 0)

Bloody hell isnt it annoying mad mad - how the hell do they think anything will be different this time!!!!!!!!!!!! Lizzie..

If there is a big problem with relaxing the rectal/anal muscles (what are they called?) surely they can do a little 'snip' and loosen the anal spincter?? I have heard of that being done before - but can't remember the technical name - cant you ask about that yeah ???

the only alternative is an ileostomy but i am sure you have thought of that as the last resort hun. x

Posted 4/3/2009 12:35 PM (GMT 0)
I think it's called a sphincterotomy? I asked about this, but was told it would leave me incontinent. Not sure what the difference is, why it works for some and not others. I have a friend that had this done for fissures (I think), and she said it worked wonderfully. It would be worth asking about Lizzie.

Posted 4/3/2009 6:07 PM (GMT 0)
JJ,
Wow, I hadn't heard of having a healthy colon, and then just having a rectum that doesn't work. I have pelvic floor dysfunction myself, so sometimes I feel like I have a bottom full and can't get it out. Do suppositories or enemas work for you? They didn't work well for me before because of the colon inertia, but sometimes I would take a laxative, and it would move it only so far, and then suppositories would help get the rest out.

I took a lomotil at bedtime and didn't have to go from about 11 pm til 10 am....but then I took some fiber and all day I've gone a few times, but feel "Full" down there. I guess it's just a matter of playing with the medicine, but I hope I can get this figured out. Going 20X a day feels great as far as my abdomen and rectum feeling empty, but my butt is so sore! Then when I don't go as often, my rectum feels full. I'm sure it will settle down soon; it's only been a week that I've been eating.

When I tried biofeedback, my problem was that I thought I was pushing, when really I wasn't. It was very strange. I know I have this problem, but I did pass the defogram ok so my doctor thought I should be ok with the colectomy. I'm hoping he's right, and the pelvic floor dysfunction doesn't come back to haunt me!!

Good luck to you and Lizzie....what are you two taking in the meantime to help you go??
Posted 4/3/2009 6:48 PM (GMT 0)
I feel like I am full ALL the time, I can't remember the last time I felt empty. I also have the urge to go pretty much all the time. It gets down there, it just can't get out. Suppositories and enemas are terrible because they make the urge much worse, but still nothing comes out. Same thing happens with laxatives.

11p-10a- that's a long time! I hope you can find the right mix. Maybe try half a lomotil? Just tossing ideas out there. Hopefully once you get your diet back on track you'll regulate better too.

I hope this works for you too! Wouldn't that be nice!

Currently I am not taking anything. Literally, I have tried everything out there. Nothing works. Not even muscle relaxers. I am just "patiently" waiting to see my doctor again to make a plan...17 days =)

Good luck to you!
Posted 4/4/2009 2:31 AM (GMT 0)

HI all.....

Its fun reading all of your posts. We all think so much alike. This waiting game is horrible.....just purely hell.

Lauren....My gosh, I feel your pain. I feel just like you do, incredibly, but I also had the colon problem. The at home therpay is just like what you did in office with the rectal probe, etc, but you do it everyday. I do not care how much I do its not going to work. I asked him about the rectal myectomy (slicing the muscle) and he said this is highy ineffective. They used to try it all the time, but it cause more incontinece and further constipation than any good. The BCIR is crazy, but I am kinda intrigued and somewhat excited, as is my husband, becuase I think it woul keep my confidence in life and my body. I too, just as you could not rid of any of the barium after two defecographys, both before and after my total colectomy. I was so sick for 4-5 days with pain, and bloating, and nausea. I actually had to take 2 bottles of magnesium citate, milk of mag, and senna. I could not get anything out of me. The term on the repot was "failure to empy rectal vault". It was so miserable.

Janie...right now I use 10X the normal dose of milk of mag and that it, it cause me to have liquid ouptut, but not feull emptiness. This also cause electrolyte disturbances that affect my daily life. Last night I was so weak and my heart would slow real low amlost not palpable, then would speed up to unataible reading with my pulse taking capabilities. I have panic attqcks almost every day becasue of my history of heart attack and arrest. I cannot live like this any longer. I have tried all and I WILL do two months more, but it kills me inside to just prolonge what I believe is the ineveitable. I am so happy you are doing well and I wish you the best with continued health and bowel movements :)

Hodaya....what are we going to do? I wish I could just grab all you girls, give you a big hug, and have some coffee or alcoholic beverages to vent about what we are going through. I have had a bad eweek at work....lots of cancer patients and only so much time for me to give them the care they need. I wish you all the best, really, I miss you guys when I dont hear from you, your my only saving grace. Hope you are all having a good night.

FYI....my surgeon here in MI, he thinks I may be a good candidate for the BCIR, but he also thinks an ileostomy would cure my problems without the risks of a BCIR. Its a much longer hospital stay and surgery, plus more risk for complication. I do not know what to do.....seriously going crazy:( my likfe resovels around my bowels and I hate it......

miss u all.

Lizzie

Posted 4/4/2009 2:56 AM (GMT 0)

Oh my goodness Lizzie. Not knowing what to do is so emotionally draining. I wish there was a step by step way to take care of our problems. If you have this, then you do that. If you have that, then you do this. Life just gets so hard when you are feeling miserable. I can hear your frustration with it all and you rightly deserve to be frustrated. When you think you have an anwer or next plan of action something else comes up. I don't know what BCIR is, so I think I'll look it up so I know what you are talking about.

I hear ya, when you say your life revolves around poop. One of my kids is very developmentally delayed. He's 13 and most days he's more typical of a 2-7 yr old. Tonight we let him pick dinner and he wanted to eat at a little Chineese restaurant in town. I had to tell him we had to pick it up and eat at home. mad He argued until I said But I think I have to go to bathroom. He asked if they had one there. I said I mean poop. Then his shoulders went down and he accepted the answer as he knows when I go in to do that I'm in for at least an hour and then sicker coming out. I am so tired of this ruling my  life.

It stinks that anyone should have to go through what we are, but I am so thankful to have this group.

Linda

Posted 4/4/2009 4:05 AM (GMT 0)

Hi Everyone,

Hope you are doing well.  Even though they blasted my kidney stones last week still have the same pain, have to go back next week to see if they were successful, if not they try again, arrrrrggggg.

Lizzie-I know you are VERY frustrated and in pain but try to hang in there; there IS always HOPE. So many of us have been so sick like you and are finally well.  I pray everyday that you find someone to help you.

EVERYONE- PLEASE say a prayer for the victims and their families of the horrific shooting that occurred in my hometown today; I live in Binghamton, NY and if you didn't hear, a gunman held over 40 people hostage and killed 14 and critically wounded 4.  This happened 5 minutes from my house and truly makes my heart sad.

Peace and prayers to all of you,

Judy

Posted 4/4/2009 4:43 AM (GMT 0)
Hello Again

Wow reading some of these stories i feel like i wrote them myself. It is so nice to have someone who understands what i am going through and feels my pain.

Jaine - I feel the same way my bottom feels full and i just can not get it out i have explained that to all of my Dr's and finally i found Dr. Marks here in Philadelphia that as soon as i said that to him he new exactly what test for me to do and diagnoosed me witht he CI. How are you feeling?it has been what 2 weeks since your surgery? What do you mean by hand assisted? Does eveyone have to have the NG tube?? I was just in the hospital and they gave me one of them and i hated it i freaked out and made them take it out. Well i will be anxious to hear how the rest of your recovery goes and if you dont mind me asking some questions as i think of them... Good luck and hope you are feeling well.

Linda - it is so crazy how alike our stories are. I hope all goes well with you surgery in a couple of weeks i will keep you in my thoughts and pray everyting goes well and you will be able to get the laproscopic surgery done. Did you say you had the pelvic floor dysfunction too? Does anyone know if all of this goes hand in hand? I find it crazy that all of us have the same problem. From what my surgeon told me this is not very common. Nothing i have is ever common.

Lizze - Thank you for all of the helpful infomation about the hospital stay and what to bring I'm sure i will need to do something to keep myself busy and try not to think about my kids that will be at home i have a 6 year son and a 2 year old daughter so it will be hard being in the hospital that long. It sounds like you have been through so much I am sorry you are not getting answers i hope you get to the bottom of this soon. I actually did the biofeedback too and it did not work for me I had seen a Dr at the university of Penn and she sent me for the biofeedback thinking that would help i did that for an hour 2 times a week for 3 months and i never got any better i had no muscle strength at all the first day i went and still had non the last time i was there. I ended up going to another surgeron that my cousin told me about Dr Marks who she works with in the OR and he is unbelivable and he said Biofeedback will never work for me. pretty much i am a hopeless cause for that. I hope you have beeter luck then i did with it. Keep your head up!!

Lauren - I was reading how you had ghe defafography and did not get the contrast out for a few days. I had the exact same problem it was crazy i thought as soon as i sat on the toilet it would have come right out like they said it would and i tried to push and nothing it was crazy. Did you ever have a problem with your uterus or bladder due to the pelivc floor dysfunction? it seems like all of my organs in that general area are falling and i just keep getting them removed one at a time.

Just wanted to thank everyone again for being such great support and i am so glad i found this! I am looking forward to getting to know everyone and I wish everyone the best of luck!! SMILE!!

Kristin
Posted 4/4/2009 12:32 PM (GMT 0)
Lizzie- It's crazy how similar our stories are! I agree with you, no amount of biofeedback is going to change anything! Can we please move on from it! I feel like everyone thinks it's a magic cure for everything, but really, it's not..and if one more person tells me my problems are all in my head, or only exist because I'm anxious and depressed I am going to go crazy!! The only reason I am anxious and depressed is because I don't feel like anyone believes me about how I feel and they all keep telling me it's in my head!!! (This is what the biofeedback therapist hinted at yesterday). It's not in my head if I have multiple tests that show you there is a physical problem!! (Sorry- had to vent).

Kristin- I am new to this forum as well. I cannot tell you how wonderful it has been to finally find people that understand how I feel and are going through the same things! I have felt so alone for so many years until I found this site! What a blessing to find all of these wonderful people. Everyone has been so friendly and welcoming- they have really made me feel so much better just knowing there are people out there with the same problems. All the doctors (except my surgeon now- he's great) act like they've never seen anything like this before.

I have had trouble passing urine at times too. But this has never been anywhere near as bad as the pooping issues. Also, I have very irregular periods. It just comes at what seems like very random times. Sometimes not for 2 months, then sometimes 2 or 3 times in a month- and very painful. When I told my gyn about this, she acted like I was crazy for mentioning it to her, and told me that it was just because I was too small, and if I gained weight it would help. (Even though I have been the same size for years, and have only had these problems for the last couple of years.)
What kind of problems did you have with your uterus and bladder? I see you had a hysterectomy- very young too!
I hope your surgery goes well, and you get some relief when it's all over!

Linda- I'm right there with you! I feel like poop runs my life- not fun! Especially not fun when you other things going on in life and other people to take care of.
Posted 4/4/2009 1:29 PM (GMT 0)
I've never had trouble passing urine, but it's more common for me to not completely empty. I just made a comment about it to one of the intake nurses and didn't bring it up with the dr (2nd opinion dr) because it just isn't that big of deal compared to my pooper issues. I hope I didn't make a mistake by not bringing it up. I have to be careful about coughing, running (well I don't run, I sort of walk fast :o), fast movement or I do pee a bit. I figured it was just old age, I'm 48.

Judy, I love your attitude! You have been through the wringer! I am so glad to hear you are feeling good now. I will always remember what you've been through and how it has brought you to good health again. Yes, there is always hope. I also have chronic kidney stones! I have them right now but they are just hanging out not moving much. I've had them blasted in the past. I hope yours was successful. My body just keeps producing them.

I am so sorry to hear that this shooting was so close to your home! How scary. Everyone says that they just can't believe something horrible would happen in their town, but it does. It can happen anywhere, and that is an awful reality.

Kristin, I don't have pelvic floor dysfunction thank goodness. My dr said I do have a very, very small tendency to not loosen the rectum muscles to let it out. He said it is not enough to be causing problems though. He said if anything that could help me control bm's after the surgery. I don't think I've mentioned it but I also have a small rectocele, but he doesn't want to do anything with it at this time since it is not bothering me. I don't feel like I have anything in my rectum. I know there is a small percentage of those who have this surgery end up with too loose of stools so he said if's it's not something bothering me we'll leave it alone. It can always be addressed later if needed. I agreed.

Lizzie, I get the same remarks. I'm told Well you know the meds you take for depression can cause constipation. So what. I've had this severe constipation my whole life so it's not something that started with the meds.

I like how you guys put your diagnosis at the bottom of your posts. I should do that too. But then I'd have to do some big thinking about years it all happened and I don't know if I'm up to that! Maybe I'll just put down dates that I know and list the rest. It helps me to see what you all have been through and where you are at now.

Thank you everyone for sharing your stories!
Linda
Posted 4/4/2009 2:33 PM (GMT 0)
Brief history: Sub-total colectomy March 18, 2008. Partial small bowel obstruction March 29, 2008. Depression: Paxil 10 mgs, switched to Lexapro a week ago (Paxil stopped working). Postpartum thyroiditis after daughter in 2006. REcent bloodwork shows low Vit D and low Free T3.

Okay...i am really freaking out. I started Lexapro a week ago and love it so far. Coincidently, I have been having diarrhea (rare for me). Its not painful diarrhea, just have to go. I am not sure if this relative, but I have this "kicking" sensation (the only way I can describe it...it feels like a baby kick) right near my belly button. I took a pg test, had my blood drawn and I am not prego (and I knew I wasn't). I even had my hubby feel it, and sure enough, he says it feels just like I described.

I went to the doc b/c I am freaking out it is an aneurysm. He told me that he thinks its the Lexapro and to go off the meds! I am so completely frustrated! He did not have an answer for me as to why I am experiencing this. It's not gas and the only other thing I can think is my ability to feel my aorta pulse...but it is hightened right beside my belly button or the beginning of an obstruction. He tells me to go off the meds for a whole week...so not only do I have this feeling, but I am starting to get those "brain snaps" and withdraw symptoms...I think I need a new doc!

Call me a hypochondriace...but I CANNOT get this off my mind...I am feeling it as I sit here.

What do you guys think?
Posted 4/4/2009 3:06 PM (GMT 0)

mom2sophia-I think you need to get to a new doctor right away. You know your body best. Aortic aneurysms are nothing to ding around with. Did he do any tests to see what was in there? Some dr.'s think we make too much of things and take a wait and see attitude.  nono  I don't like it when you know there is something abnormal going on. I haven't been on Lexapro so can't offer you anything on that. I would freak if my dr told me to go off antidepressants for a week and see what happens. Are you able to see another dr.? Especially having your husband feel it too is scary. Have you looked up lexapro on the internet to see if anyone else has ever experienced this?

Linda

Posted 4/4/2009 4:15 PM (GMT 0)

Hii everyone,

Kristin,

Hand assisted lap. surgery just means that my doctor made a bikini cut very low and actually used his hand to sew me up when he attached my small intestine to my rectum.  I guess you can do it without the hand assisted, but he said he prefers to do it that way, he has more control and it seems to work better for him.  It's crazy though, because I only have 2 tiny little scars where he actually pulled the colon through.

I had the NG tube for 5 days, partly because everyone here scared me to death about having it taken out too soon! I was adament that I didn't want them to take it out and then have to put it back in!! They did try to clamp it off after day 3 without actually taking it out, but I started to feel nauseous, so they unclamped it.  I hated it, but dealt with it because I had to.  I have slow emptying of my stomach, so that was a big reason I had it.  I think most people do have it, but I've read some who said they didn't.  I just knew that I wanted it in when I woke up and not after I was awake and throwing up!!

It's been 2 1/2 weeks since surgery and I feel good.  My back hurts some, but I think that may be from sitting around too much (although I get up and dressed and go out somewhere every day) and from sitting on the toilet so much.  I'm still going close to 20x a day, but I'm taking meds to slow it down.  I'm working on the right amount because I'm scared to death of NOT being able to poop again.  I spent most of my entire life not pooping, so this is just wonderful.  Even when I have to go in a hurry, I have enough control so I haven't had any accidents (except the first day in the hospital after eating liquids; I pooped everywhere and had no control for 24 hours!).

My heart just breaks for those of you who have already had surgery and still have problems.  I have pelvic floor dysfunction, and a rectocele, but so far I can certainly go.  I pray every day that doesn't change.  For those who are scheduled for surgery, I can just say to be prepared for a pretty tough first week, but stay drugged  as much as you can the first couple days and it goes by pretty fast.  I wasn't in that much pain, just uncomfortable with all the tubes, catheter and general just feeling yucky.  I was so depressed for a couple days because I didn't expect to feel so yucky.  But that passed, and I started eating and pooping, and then it  all seemed worth it!

Mom2sophia,

I agree with Linda.  If your doctor didn't order any tests, I would go find another doctor right away.  You know your body better than anyone.  Also, I don't think when you're on antidepressants, you should stop them cold turkey.  I would definitely pursue this with another doctor.

Before I had surgery, my doctor had me try biofeedback as well.  I didn't see any difference.  I wonder, does biofeedback ever work?  It must work for some people because why would they keep pushing it, but I've yet to meet anyone who has been helped with it. 

Lizzie, I know you have to do what the Dr. recommends, but I'm glad you have your appt. set up for June.  As scary as another surgery seems, I think right now I'd chose the ileostomy just to move on with my life.  For so many years everything in my life revolved around my bowels--when we could go out to eat, when we could go on vacation and what nights I could schedule to poop, when we had visitors, what nights I had to make up an excuse to not go out with them and stay home and try to go to the bathroom?  I know there are horrible diseases that so many people can have, and I feel blessed in my life in so many ways, but not being able to poop is a horrible way to live.  I'm sorry there are so many people here with problems, but finding this forum was a  Godsend, because this was just something I didn't discuss with everyone.  My family had an idea, but only others with the same problems can really understand.

Hoping everyone has a good weekend and feeling better.

Hugs, Janie

Posted 4/4/2009 9:45 PM (GMT 0)
BOY.. i can't keep up with you guys!! just wanted to tell you i love y'all!!!!

((((HUGS))))
Posted 4/5/2009 1:54 AM (GMT 0)

Hi Kristin,

We've had some similair surgeries; I had my complete hysterectomy at 29. I had a subtotal colectomy, they left 2 inches of my colon in July of last year; I have NEVER felt better :-) !  My surgery was open even though I had previous severe adhesion & scar tissue removal in 2005 due to my previous abdominal surgeries.  I was only in the hospital for 5 days. I had an NG tube for 2 days although my surgeon told them to take it out after the first day so when he came in the next morning & it was still in he wasn't happy so he took it out; that truly was probably the MOST uncomfortable part of the surgery for me; first because I have an extremely high tolerance for pain and secondly I had an epidural...absolutely the best for pain control...ask about one...seems you have had abdominal surgeries before then you know what to expect, so it really isn't that bad...afterward my dr gave me MOM the next day and I started going to with BMs, a LOT of them, then I started on solid food.  I had 20+ at first, never had any accidents but needed a bathroom close by at first, couldn't take anything to slow things down as everything would completely stop and I wasn't doing that again...by 6 weeks I went back to work full time as a teacher...was having 8-10 bms a day...but work w/ some great people so it wasn't a problem leaving my room...I was and still am on a low residue/low fiber diet as I have a hard time digesting things...I thought after this surgery my wheat intolerance would go away but it didn't mad ...so some things don't change, but the bowel issues are forever hopefully changed.  I have never felt so good or looked so good.  I did loose about 12 pounds from the surgery and have gain 2 back...but I'd rather keep the 2 off smilewinkgrin .

If you have anymore questions that I might be able to help you with, just ask.

Linda-I feel like we are twins! When I read your list of surgeries to my husband he said is it you?haha...I had my appendectomy at 15 when a cyst on my ovary burst...my first surgery was at 8 to remove my spleen after a car accident and life has never been the same...have you found anything to help keep the kidney stones away?  I don't have the "normal/common" I have the uric acid ones...I take 2 different meds but I still get them at least once a year; they usually have to remove them, this is the first time blasting them. I might ask to have them (I have 3) taken out through my back instead of blasting again because my surgeon was out of town last time and he will usually do what I want. BTY-Love your cooment in your profile section about the drs smilewinkgrin !

You must be excited and nervous too about your colectomy...it will be the best thing you've ever had done.  You'll be amaxed at how good you feel...I seriously didn't know I looked that or felt that bad until afterward, especially when drs started telling me how healthy I looked.  I truly wish you and Kristin the best.  I will be praying for you as I do for everyone on here.

Blessings, peace and prayers,

Judy

Posted 4/5/2009 2:40 AM (GMT 0)

finallyfree said...

Linda-have you found anything to help keep the kidney stones away?  I don't have the "normal/common" I have the uric acid ones...I take 2 different meds but I still get them at least once a year; they usually have to remove them, this is the first time blasting them. I might ask to have them (I have 3) taken out through my back instead of blasting again because my surgeon was out of town last time and he will usually do what I want. BTY-Love your cooment in your profile section about the drs smilewinkgrin !

I have calcium kidney stones and it's not from an over abundance of calcium. I don't know why I produce them. Although I am supposed to drink 6 liters of water each day and I just can't do that! All of mine have left me by passing, blasting or just stay in there keeping residence in my kidneys.

You must be excited and nervous too about your colectomy...it will be the best thing you've ever had done.  You'll be amaxed at how good you feel...I seriously didn't know I looked that or felt that bad until afterward, especially when drs started telling me how healthy I looked.  I truly wish you and Kristin the best.  I will be praying for you as I do for everyone on here.

I get very excited when I read how successful it was for people...so thank you so so much for writing. and you are right I am both excited by nervous. I'll get panicky out of the blue hoping I am doing the right thing, because when it comes down to it, this is voluntary. It' s not like I have cancer and have to do it. My dr said I'll have an epidural in too, so it sounds like my pain management will be pretty good. I hope! We have 4 kids so I am trying to figure out kid care and have the house organized (lost cause). I think I'd just feel better knowing things are in place at home while I'm gone. I'm always tired so I hope that is part of the symptoms and I'll have more energy.

Thank you everyone for writing, it means so much to me with the surgery coming up. Once I have it I will keep writing too, for those who are waiting or trying to decide. confused

Posted 4/5/2009 6:19 AM (GMT 0)
hi all,

Judy - i have 2 questions.. what do you mean about the MOM?? you're not still using it, are you? i don't want to still have to take ANY laxatives post op..
second.. about the epidural, how long does it's influence last? how long till you had to start with other pain meds? what are the risks of taking one?

BTW, are you feeling any better with the kidney pain? i'll be praying for you to feel better and that the problem resolves.

much love to everyone!
Posted 4/5/2009 3:52 PM (GMT 0)
idea  Lizzie i was thinking of you just now as i was looking on the web for info about hernias as i have some pain like a stitch in the front left side of my tummy which wont go away today - it may be because i had a bad cough for a week and have been busy looking after my mum etc.  The symptoms they describe dont sound like i have one. 

anyway, there are many different types of hernia and it spoke of a hernia that can cause symptoms of bowel obstruction e.g nausea and vomiting and can be very hard to diagnose - have they looked into that Lizzie ?  if not it is def worth mentioning...just a thought.

Posted 4/5/2009 10:45 PM (GMT 0)

Hey Karen....

So good to hear from you. I was getting worried b/c it had been a while. They have done so many tests as far as CT scans, xrays, ultrasounds, etc but never spoke of a hernia. I too have had RLQ pain for 48 hours. I vomited last night and this after noon, but have kept some crackers and a bit of cheese and powerade down this evening. I am in a ton of pain in my back again.....I am just afraid to keep up on the vicodin b/c of the constant cycle with laxative chasing. If your pain continues you should just call to ask if you should get checked out....do not let it persist esp b/c your so newly post-op.

Hodya- how are you this weekend? Is you mom out of the hospital and home? Thinking of you always.....

Janie....I tihink about surgery every day and how much better my life would be....I just cannot make the doctors work any faster. I keep doing what they want me to do. I am hoping to get more information on the BCIR or k-pouch before ileostomy.

Judy- Glad you are doing so well still!!!! Its so promising to others when they heara story like yours versus mine.

Hope all are well.

lizzie

Posted 4/5/2009 10:59 PM (GMT 0)
Lizzie,
I understand how slow the doctors can be. I didn't mean that you didn't want to get fixed soon; I just meant that as miserable as you are, surgery will probably be a blessing when you finally do have it. I hope you're able to have a better option than the ileostomy--I really do. It sounds like you have a good doctor, and that's so important.

I'm still doing well; going almost 20x a day, but when I take too much fiber or lomotil, I feel like I have to go and can't, so I'm going to just keep going and hope time will slow it down! I do have some backaches, though. Is that normal?
Janie
Posted 4/6/2009 6:25 AM (GMT 0)
hi all,

i'm so excited to tell you all that my mom is getting out of the hosp today, AAAAAAAND w/o the oxygen!!!! would you believe this?????? as a matter of fact she's been w/o ANY oxygen for the last 3 days, and breathing on her own completely!!! yeah!!! just didn't want to get too excited too soon. we were all, including the drs, simply AMAZED!!! thank you all so much for your prayers and support, they've been answered!! so thanks a million and endless love to all of you!!!!!

my dear Lizzie, keep your chin up!! we're all praying for you, honey.

Janie - did you have an epidural? cause that can also cause some back pain for a while. do you think it's a good idea to have it?
Posted 4/6/2009 2:25 PM (GMT 0)
Janie, I'm curious about your thoughts on the epidural too since my dr said I'll have one.

Hodaya-so happy about your mom! Yeah!

Lizzie-It is so frustrating jumping through all the hoops, but once you have, then you definately know the right answer. Praying for you.
Posted 4/6/2009 4:12 PM (GMT 0)

Linda,

Your profile sounds alot like me as far as the pooping thing. I'm a few years older, but I had my first sitz marker test in the early 80's and was told I had slow transit, but as long as laxatives work, deal with it.  I saw may doctors over the years, but decided last year to finally deal with it once and for all.  I have pelvic floor dysfunction, and I'm afraid that's bothering me a little.  If I take anything to slow down the number of  bm's, or fiber to firm it up, I have trouble going again.  I feel like I have to go, but it's so hard to get out.  This is reallly graphic, but I feel like my butt hole is going to fall out!  When I stop taking the fiber and lomotil, I go again, but it's very liquidy and I go  all day.  It's just a matter of working with it, and waiting for my small intestine to take over, I guess.  I just hope the pelvic floor dysfunction isn't going to be a real problem.  I am scared to death of being constipated again.

I didn't have an epidural; it wasn't even offered to me.  I think all doctors do things their way.  I had a pain pump, and to be honest, I really wasn't in that much pain after surgery at all.  I used the pump because it knocked me out, and I wanted to sleep because I was uncomfortable with all the tubes, catheter, etc.  My back bothered me alot  because the bed was so uncomfortable, but my abdomen really didn't hurt all that much.  People who have had the epidural seem to love it though, so if your doctor says you'll have one, I wouldn't worry about it at all.  Your date is getting close!  I'm so excited for you.  I think you'll be much happier.  What are you taking in the meantime to go?

Hodaya,

I'm so happy to hear about your mom.  I know it will be a real relief to have her home  from the hospital and feeling well!! 

Hope everyone else is hanging in there!

Janie

Posted 4/6/2009 6:57 PM (GMT 0)
Janie, Just keep writing how well you are doing so I don't chicken out! To go now I have to use a 2 qt tap water enema. I do that every 3 days. If I wait longer I get a lot sicker feeling. Sometimes I feel OK after the enema other times I feel like I'm going to explode. You've probably written somewhere but can you tell me what is it that your pelvic floor is/isn't doing? Has it dropped? Couldn't that be fixed, whatever the problem with it is?
Linda
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