HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 32

Support Forums
>
Ostomies
✚ New Topic locked
1 2 34 5 6 7 8 9 10 11
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/13/2010 3:29 AM (GMT 0)
Lizzie,
SO good to hear from you. Even though it sounds like you're still so sick, you sound good and I'm so glad the pouch is working. I know it's been such a long long journey, but hopefully this is the beginning of a much better life! I'm so glad you have your parents to take care of you. As a mom, it must be so hard for them to see you have to go through so much. I hate it when my son has a cold!! LOL
Love you too, and please keep us updated. We've missed you so much around here!

Where is everyone? Hopefully no news means everyone is doing well....
Hugs,
Janie
Posted 2/13/2010 3:35 AM (GMT 0)

Lizzie,

I'm praying for you all the way from the Faulkland Islands.  Glad the pouch is working.  You are really having to work at all the peripheral issues though.  My prayers are with you.

Did they find lots of adhesions when they went in and was that what was making you throw up every time you ate?  Or did they find some other cause?  So far it sounds like you are no longer doing that, so they must have found something and fixed it.

Will catch up with other posts as I have time.  Was out of range most of the time we were in Antarctica.  Welcome new people and good luck to everyone else.  Rosemary 

Posted 2/13/2010 5:26 AM (GMT 0)
Hello everyone. I am new here and have been reading all the previous posts as much as possible. I have spent 4 hours online today alone going through them all and I am still on only part 7. There is so much to read. This website has been a godsend to me. I hope you ladies realize how much you are helping people going through these tough times. I hope you all don't mind me posting. I will tell you a little about my situation.

I am 32 years old and for as long as I can remember I have had bowel issues. I go from constipation to diarrhea very easily and have had horrible cramping, frequently I sit on the toilet with a bucket as well. I had three children and after the birth of my last son I developed a large rectocele. I went to the gyne who recommended that I fix it with a mesh in place. He said it would be slightly painful but after the first two days significantly better. Boy was he wrong. The second day after surgery I was in so much pain that I couldn't lay down, definately not sit and constantly felt like I had to have a bowel movement that felt stuck. Dr. had no idea what was wrong with me and explained it away as having nerve damage. A month later still wasn't better, pain was better, but bulge feeling in my rectum was the same. I felt like I was sitting on my rectal canal. He insisted that it was swelling and twice I underwent steroid shots...in my vagina....which was absolutely horrible. Still didn't work. Underwent a second surgery to remove part of the mesh and still didn't work. This has been going on since Sept. Finally went to see a colorectal surgeon who knew exactly what I was talking about and he ordered a colonoscopy. I kept waking during the exam in pain. All he told me afterward was that my colon was long and twisted. Had an appointment with him this past Wed. and he said it was actually one of the longest colons he has ever seen and that certainly it was the longest he had seen for my age. He also said that when he did a digital examination that he can feel there is an area where I am unable to push properly. I am not sure what that means. He sent me for a sitz marker study to check for colon inertia and I swallowed the pill that day. I had my first xray on Thursday and the tech let me look at it. Most of the markers seemed to be in my small bowel still with some being in my colon. I know they are all still there because I have not gone to the bathroom since Tues. I am very uncomfortable but I know I can't take anything because I don't want to alter the test. I am confused a little bit because it seems like most of you that did the marker test were xrayed for the final time on day five. I am being xrayed on day 4 and day 7. I cannot wait until day 7 to have a bowel movement if one doesn't take place on its own. I can barely sit right now and my whole right side is very hard and uncomfortable. Do you think that if I don't pass any stool after my xray on sunday that I can call him and beg to take Miralax or something? Obviously if all the markers are still there for this next xray it would indicate there is a problem right? When does stool normally pass for people without issues? This is all so new to me and I am a little scared but excited at the same time because finally someone is listening to me and knows I am not just being a drama queen and telling me there is nothing wrong. Thank you all so much for listening to my story and being here so people like me know this isn't the end of the world and it will get better.

Shannon
Posted 2/13/2010 3:03 PM (GMT 0)
Shannon, I hear your pain girl! I also had the shot in the vagina!!!!!! Can anyone say OUCHHHHHHHHHHHHHHHHHHH! It hurt so bad I thought I would pass out from the pain. I had my poor doctors head pinned between my knees. He is lucky he still has a head actually! HEEHEE I told him NEVER again! He wanted me initially to get 5 injections. NO WAY! You are one brave woman going back for #2.

As far as waiting 7 days! HMMMM, I would really try to tough it out if all possible. This will really indicate where the problem is. See, if all the markers get stuck in the rectum, then they will know it is an outlet problem...if they all stay in the ascending, transverse, descending, etc, colon, then this would indicate colonic inertia! I know it is miserable, but you want the test results to be accurate.

I have both issues, colonic inertia and an outlet problem. The transit marker test showed an extremely slow colon, colonic inertia! Then, I had a defecogram, which showed anismus, which is a pelvic floor dysfunction! I could not poop out the paste they placed inside my rectum. Most people can empty their rectums in 30 seconds or something AMAZING like that! LOL Not me, it takes hours for me to get out a tiny bm.

Did you mean you vomit too? I have always struggled with colonic inertia, but the outlet problem didn't come about until I got pregnant with my 1st child, I have 4. But, it was manageable and doable! I then had a hysterectomy and pelvic prolapse repairs in 2005 and my outlet problem was significantly worse! I couldn't push down to defecate! I was pretty freaked. I went to a couple more doctors, then found Dr. Miklos and Dr. Moore that deal with pelvic prolapse issues. I still had moderate prolapses of the rectum and bladder, so they went in and did a sacralcolopopexy which is where they use mesh to pull the entire pelvic floor up. Dr. Miklos speculated this surgery would correct the outlet problem. Well, he was DEAD WRONG! This surgery only intensified the outlet problem!

I went to see 3 colorectal doctors. 2 proposed I have the total colectomy, which is where they remove the entire colon and attach the small intestines to the rectum. But, they didn't address the outlet problem. This doctor that I am seeing now seems to have a good understanding of outlet problems so tried a botox injection into the puborectalis muscle, I WAS ASLEEP for this one, but it didn't help. I have since had 4 more tests on the rectum, but have not got back the results! I will be undergoing biofeedback, 5 session, in the next couple of months.

And if that doesn't help, I am going to FREAK OUT and go running up and down the streets butt naked yelling and screaming! Okay, not really, but you get the picture! LOL

No, I was actually considering doing something drastic which is to rid myself of all this time I sit on the toilet. Getting the BCIR procedure which is where they remove the rectum and colon and make an internal pouch out of your small intestine and I would then have to empty my waste out of a small stoma through a catheter.

My immediate family wants me to have this surgery and ASAP because they see how much time I spend in the bathroom and they want me back in their lives. My mom does not want me to have it and so far will not listen to anything about the procedure. But, she will come around eventually.


I am so glad you found us. Welcome! You have found the best group of women! We can talk about pooping with no embarassment and it is awesome. To finally talk to somebody else that understands your problem is PRICELESS!

Tracy

Post Edited (answers4meTDR) : 2/13/2010 8:07:18 AM (GMT-7)

Posted 2/13/2010 3:36 PM (GMT 0)
Butterfly, How are you? I am worried about you since we haven't heard from you....please let me know you are ok.

Lizzie, you went in very sick. I am sure it will take some time to get back on your feet. I did read that some people that have a bcir or k-pouch sometimes suffer with anemia because of the microscopic blood loss due to the intubation. Could this be what the problem is? I know being anemic can cause lethargy!
Posted 2/13/2010 4:05 PM (GMT 0)
Hi Shannon and welcome to the board. Great bunch of ladies here with a lot of information. You can ask anything you want, and I mean anything. No embarrassment here.

I dont know what my deal is, but I started having rectal bleeding again yesterday. Not just a little either. It looked like I was on the rag, but not. Maybe its nothing, I hope. I just get so paranoid. I think I will give it over the weekend a see if it gets better. Still having the constant pain on the right side under ribs. Just want to feel good, like everyone here.

Lizzie, I hope you are coming along. Its going to take time to recover from this. You were in the hospital for so long, I think your body is in shock. As long as you can make improvement every day then you will come along. How is the eating going?

Well, I have a lot of housework to do today, so I better get a move on. Just wanted to check up on you wonderful people. Love you all and have a dandy day~~
Posted 2/13/2010 4:13 PM (GMT 0)
Tracy,

Thank you so much for replying to my post. Sounds like you have been through the ringer as well. I think I may have an outlet problem...not a bad one...because sometimes when I have to go, I feel like I can't push the poop out and I have to push on my butt cheeks to get it out. However, this is only the case with normal formed stool. When I haven't gone for a while and my body starts having the cramping and soft poop it ismuch easier to get out because my cramps help me push if you know what I mean. Having my rectocele fixed is what intensified all my problems. I was able to somewhat go better before this surgery. I feel like it has made my problems 100 percent worse. Right now I wish I could go. I feel like there is so much pressure down there. I know that I can't wait until Wed. to go. My right side hurts so bad to sit and when I move it feels like I am compressing an organ. I would assume the day 4 xray, since they are alll still in there would be an important xray. I feel as though I could wait until then I am doing good. I am assuming the day 7 is just to see if there are any left at that point right? Wouldn't the day 4 give them most of the information they need?

Yes I do vomit when I get backed up and start having the cramping. I thought for a while I was having gallbladder issues because under my right rib cage hurts so bad but I have been realizing that once I am able to go the pain is gone. I am also wondering now if all this heartburn I have all the time is a result of being loaded with stool. This is all so crazy to me right now. I went from thinking I had a normal rectocele/urethral prolapse to all of this. I just always thought all these poop issues were normal for me. I guess I should have known better.

Were those shots in the vagina not the most horrific thing? I had a total of 14 of them. I was begging for him to stop. My husband said it was the most crazy thing he had ever seen. I can't wait to have all this behind me. I am so glad that all of you are here to talk to. My friends don't understand. When I try to talk about it they are just amazed at my lack of going to the bathroom. What can they do if you have an outlet problem? Obviously there is something going on that has caused my colon to be so long and I am assuming that if I let the problem coninue that it will only get worse with time right? I tried to ask my doctor all these questions but he wasn't wanting to discuss anything  until after the testing was done. I wish I at least knew what the possibilities are so I can be prepared.

So you haven't donethe biofeedback yet? How is that done? I don't understand how they can retrain your insides to work properly. Is it kind of like physical therapy but for your butt? OMG that sounds so wrong. I have never talked so openly about rectums and colons in my life. LOL I guess its all par for the course  right. I am so sorry that so many of us have to go through this. I am amazed that you are able to live the way you are for so long. I am so excited that there is a light at the end of the tunnel for me.


Thanks again for replying back to me. I really appreciate it and I hope you realize how much it helps.

Shannon

Posted 2/13/2010 9:55 PM (GMT 0)
Lizzie, I hate for you to go thru all of this pain and suffering.  You're much too sweet of a gal and have gone thru so much in a short time.  I wish that I could help you somehow. You were sick for so long, but maybe it will get a little better with each passing day.  It is a big positive that your output is doing good.  That's what we all want to hear.  You've been thru a huge ordeal and I'm sure that your body needs lots of sleep and rest to heal and recover.  I know that it's difficult to eat after these surgeries, but please try some, even if it's just a little.

 

My good news is that my bag is producing now, too.  I am going to see my counselor next week.  He's been a big help keeping my mind in the right place.  I have to have clear liquids diet on Monday and drink terrible caster oil and magnesium citrate for my gastrograffin enama on Tuesday.  My stitches have pulled out again, so my side hurts.  My doctor said that he could see me on Monday afternoon to put them back around my tube.  For now, it's taped.

 

I wish everyone a Happy Valentine's Day early (I know it's not until tomorrow).. My husband and I are going to a french restaurant tonite, that we've never been to.  I hope to have some fun and put my worries away for another day... turn

Love you all very much,

 

butterfly

Posted 2/14/2010 12:01 AM (GMT 0)
Shannon, we all understand that your friends do not know what you are going through. We have all had friends that pretty much just forget about us because we are sick so much of the time. They take for granted that they can waltz in and out of the bathroom with ease. It is not fair, but this is what we have been choosen to go through in life. These people on this site are some of my closest friends. We understand each other. I am also 32 yrs old. When I had the sitz marker, all markers were left on the seventh day. Most of them in the accending and transverse colon. It was not unusual for me to go once a month. It got very painful. I am doing well right now. I still battle some pain and a lot of nausea. And I take miralax daily to keep things flowing. Where are you from?

Lori, glad to hear things are moving again. So sorry you have to drink that terrible crap for your test. That is the worst about all these tests. You have to choke that stuff down. Good luck with that and the test.

check in on ya all later, Love you all
Posted 2/14/2010 12:16 AM (GMT 0)
Marisa....did I read right that you had an open colectomy and still need to take miralax? How come that is? Tomorrow I have my xray for day 4. Still have not gone to the bathroom yet...very annoying but what can you do. I am now in the phase where I am not hungry because I feel so full. I am curious to see where the markers are at tomorrow. I would never take longer than a week or two to go to the bathroom because I start taking stuff right away. Where should the markers be around day four? I really have no idea about this stuff. I am in Chicago. Where are you?
Posted 2/14/2010 11:28 AM (GMT 0)
hi everyone welcome to the new girls, nice to meet you! you've found the best place with the best info! Hopingfor, with a normal transit time, the markers should be gone at the most after day 3! you're right, most drs do this test with one x ray on day 5, but however, i had this test 6 times!!! and each time was different. one dr had me have x rays on day 2, 4 and 6. another dr had me have'm on day 3 and 6 and my current dr had me have one on day 5. i kept my surgeon's advice that if i still didtn't go after 5 days, it would be good to continue and have more x rays after 7,9, and even 11 days. it can only help the drs know more acurately how your system works. well i kept, i think untill day 11. on day 9 they were all still there in the decending colon and not reaching the rectum yet, but on day 11 i got my period and things moved finally. but even after i had a bm, the report said my colon was way too impacted with stools. anyway, i know how hard it is to go through all of these days w/o a bm, yep, i had this 6 times, so trust me, i know. i hope these days pass as quickly as possible for you. keep us posted. Lizzie, oh honey, it's such a tough struggle for you right now, but yes, i agree with everyone else, you did go in already so sick, so it's a slow recovery with bumps to overcome. you'll make it, just takes time. well, as for me, i started taking the supplemnts and vits last Sat. by Monday i started feeling SOOO bloated and full even w/o food. i just constantly felt like i've just ate a huge meal. could barely eat and it was painful too. so i talked to this dr and he said quit everything and stay only with the mag capsules. so i quit all and didn't take anything on Wed and Thurs and felt better. then on Thurs after noon, i suddenly started to have bms......!!! even though it was just 2 table spoons, it still felt so great to unexpectedly go! and it kept improving, so i assumed this whole treatment is still in my system and starting to kick in. but i did notice that despite going, my abd was getting more and more swollen and painful. on friday i took only the mag. my abd was continuesly getting bigger and bigger, i mean no matter how much i went to the b/r, my abd was only getting bigger.... :(  it was SOOOO PAINFUL, the pain was paralizing. so i talked to the dr again and he said, go one day on clear liquids, and keep taking the mag. well it's 12:30 noon here right now, i've been on clears since morning and it seems like it doesn't matter whether i'm eating or not, my system keeps producing extreme gass and my abd is way too swollen and painful. anyway, i also made an appt to see my surgoen on the 22nd this month. but honestly, i just don't have much hope any dr can help me now, according to all of you who went back to your surgeons after the surgery.... they didn't have much to offer besides laxatives, right?
Posted 2/14/2010 12:07 PM (GMT 0)
wow.. so much to catch up on here!

Lizzie, I have been following your posts, and please know you remain in my prayers. You went into this surgery so sick and week.. it's going to take time to feel even a little normal! It does sound like the pouch is working.. what a blessing!

Hodaya, glad you have an appointment... i's just awful that everything has just stopped on you! I'll be waiting to hear if he gives you any hope... so discouraging isn't it?

Lori, March is really just around the corner! It won't be long before you see Dr. Wexner!

Rosemary, did yo mention "romancing"!!!??? You'll have to share more on that subject! Sounds like your trip is just awesome...

Marisa, bleeding again!!?? What's up with you girl? You need to make another appointment, as that doesn't sound right at this point - especially since that staple was removed.

Shannon, welcome! I never told a soul about my poo issues - for years and years and years!! This group of ladies are fantastic, and you really can talk about everything - WE UNDERSTAND! As far as my Sitz Marker test, one day one, the took a plain x-ray (a scout) and then I swallowed the capsule. I had to go back everyday for 5 days and have an x-ray. I was taking MiraLax, which was in my system, and I poo'ed 2 times during those 5 days!! Still, I had almost every marker left (20 of 24). My GI diagnosed me with CI, as the markers were scattered throughout the colon, BUT 13 of them were stuck in the recto-sigmoid - indicating an outlet problem.

Tracy, why is it taking them so long to give you the test results and start your bio-feedback?

Judy, hope you're feeling better!

Hi Janie, Jen and everyone else!

As for me, I'm 9 weeks post op! The time flew by.. I really recovered from surgery fantastic, and I feel 100% back to normal. I mentioned already about my continued poo'ing issues, however, it doesn't rule my life. I am still taking MiraLax and I do have 1-2 BM's a day, so that is definitely better then not going! However, I do still have to use a fleet suppository = almost always to either start a BM, or to finish one which I can't empty all the way. I shouldn't have a rectocele, but I still have to push around (splint) my bottom in order to assist. I think I have hemorrhoids too - as I can feel them as I wipe! After I have a BM, I just have a low pelvic ache.. like I felt after I had a baby. Maybe that is still healing because of the vaginal surgery..? Anyway, I decided not to let it consume me, and live life and only think about it when I have to go! I HATE that my stomach is so big after this surgery - I pray it is a temporary thing! I'm in better shape and weigh less then I have in over 2 years.. yet I have this big, fat looking tummy! Oh.. and one other thing.. my bladder is really screwed up since my surgery! I have a hard time emptying it.. it drizzles out at the end, and I have always had an overactive bladder - but now it has gone crazy!!
Posted 2/14/2010 5:10 PM (GMT 0)
Jenise....I just had my xray. Today is day 4 and most of course all the markers are still there since I have not gone. I am a little confused by what I saw. A lot of them are down like they want to come out...which explains all the pressure I am having but there are still some in the lower right part of my colon. Not sure how many I wish now that I would have counted. I took miralax even the day of my xray because I did not know I was going to be doing this test. I feel like what happened was the miralax helped them get through my colon and then once I stopped taking them the stool quit moving...thus some still being around where the apppendix is. Does this make sense to anyone? My colon is also very long and squiggly. Could this cause mechanical obstruction? Or are there other problems that could be going on. I am sick and tired of living this way. Your story sounds so similar to mine that its crazy. Everything started prolapsing and thats when the real problems kicked in. What is a rectopexy? How do you feel since your surgery?

Hodaya....I too, when I get my period, things clean out very well for me. I wonder why that is? A lot of my friends say the same thing. That when they get their period they poop more. Weird. Of course I started this test on my period and taking Miralax. I have since stopped both and I think that is why no BM. Thank you for all the info on the sitz test. I had no idea that they should be gone at day three. I had such a hard time finding anything on the internet about the test and what normal results should be. That is how I found this website and boy am I glad I did. I am so sorry that you are still so miserable. Is this how you have felt since the surgery?
Posted 2/14/2010 7:38 PM (GMT 0)
Hello everyone,

Hodaya,
Honey, I know exactly how you're feeling. It's so discouraging to have had this surgery and still be constipated. However, I bet anything if you'd just try miralax you'd be pleasantly surprised. Don't even think of it as a laxative, think of it as a med that you may need to take daily. It has made a huge difference in what I can eat, where I can go, my life is almost normal. I'll never be normal, but I never was before. Please give it a try. It can't hurt anything, and it may make you so much better. Seems like alot of us on here still need something to help us, and miralax is about as gentle as you can get.

Last week I had to work crazy hours, so a couple days I could only take a dose once a day. I noticed a big difference in how I felt until I could get back on my schedule of taking it twice a day. I also take a teaspoon of metamucil 2x a day and it makes my stools soft, but not liquidy. I seem to be able to empty much better with the combination.

Jenise,
Glad to hear you're feeling better. It's a shame you still need the suppositories. I was having the same problem until I added just a small amount of metamucil with the miralax. Seems like the metamucil gives me that extra "push". I was using enemas every day or so for awhile, but lately not very often at all, unless I need to go somewhere in a hurry and I want to make sure I'm "empty"! I don't use the tablespoon they recommend, only a small teaspoon, and then about 10 minutes later take my miralax. Maybe this would help you?

Shannon,
You are definitely in the right place for lots of advice and help. You can go to all the doctors in the world, but unless you've been through the "not able to poop at all" issue, they just don't really get it. Like so many others here, I had doctors for years tell me to eat more fiber, get more exercise, etc. One doctor told me to start running and that he'd never met a constipated runner!

My colon was removed 11 months ago, and it was 8 feet long, which my doctor said was one of the largest he'd removed. My colonoscopies had shown that it was "long and twisted", but he was surprised it was 8 feet long. He said normal was 5-6 feet.

Lori,
That crap you drank is the worst stuff I've every had to take in my life. I threw it up before I left the hospital the day I took it, and then came home and drank two cokes (I never drink coke) and slept for a few hours. It made me sick in a major way. So glad that's behind you. March is getting closer and closer!!

Marissa,
Yes, call your doctor and find out what the bleeding's from. That isn't normal!

Everyone else,
Hope you all have a wonderful Valentine's day and a nice weekend. Rosemary, I'm still jealous of your adventures...keep us posted!!

Janie
Posted 2/14/2010 7:50 PM (GMT 0)
Jenise, yes it's very discouraging that most of us are still struggling with constipation. i'm sorry for all the issues you're still having too. constipation is such a miserable condition. you know, i red about a certain lady who went through lots of surgeries (lost a few organs) and has lots of health probs, but she said that all of those were managable untill she got adhetions from her surgeries which caused a blockage in her intestines. she said that that was the worse thing she has ever experienced, even worse than ALL the difficult surgeries she had. so i say i guess not being able to go makes you feel most nasty, i mean not being able to get rid of the waste as should, i think it's one of the worse things too. she said she could deal with EVERYTHING, but not the blockage she experienced and said she wouldn't wish this up on her worse enemies.. and look at us, we're actually living with a chronic obstruction for years!!!!!! and everyone sais, "yeah.. so what, so you're constipated.." UUUUGGGHHHHH!!!!! makes me wanna scream!!!!! i hope things get better for you Jenise, with everything you're going through. Hopingfor, as my dr explained it to me, CI is not really understood yet and they are still not sure what causing this condition. they are assuming it has something to do with the nerves in our digestive system + a hormonal issue. as i understand it, they assume it has something to do with hormons, because: 1. CI is mostly a womens desease! 2. most women (with or w/o CI) have more bms while having their cycle. so, the hormonal balance is different between men and women. men are less prone to constipation than women, so they assume, maybe it's a hormonal issue, esp if during our cycle things improve, cause during the cycle all of our hormonal balance is different, so that proves that when there's a change in hormons balance, the whole system works differently - better concerning the bowels, so maybe this change in hormons causes us to have better bowel functioning.... but honestly i don't know nothing about hormons and stuff. but anyway, it makes sense somehow, but it's not really proved or anything, drs are still just assuming. you're right, there isn't much info about the zits test, it's not that known. well, i had the surgery on last Aug. at the first 1-2 mons things were o.k, i went to the b/r and emptied enough. month 3 was still o.k, but lately it's just getting worse and worse with constipation again and i'm just SOOO disappointed and devestated that after a huge surgery like this, i'm not seeing a significant improvement, and more over, in some ways it's even worse, cause i can't even eat almost anything, just a very limited list of foods... just can't do this anymore.
Posted 2/14/2010 8:13 PM (GMT 0)
Janie, you posted while i was typing. thanks honey, i just always have this fear that things will stop working for me too quickly and then what will i do. i'm hoping that this dr can work with me and help me find a way to balance my system. the mag is causing a major improvement with bms, BUT with the price of EXTREME gas and terrible cramping and pain - seems to keep building up constantly like crazy no matter how many bms i have and it's VERY painful. i read that one of the things the mag is causing is contraction of muscles, so it makes sense, cause it seems to cause my intestines to conrtact more than usual, thus the improvement in bms, but also the exccesive gas, and it keeps building up even w/o me eating.. the question is is how to keep the improvement with bms, but at the same time nuetrolizing the gass..?? if it's possible? will see. if i reach a dead end and am at a loss, i will take miralax.
Posted 2/14/2010 8:52 PM (GMT 0)
Janie, I too take the MiraLax and don't think of it as a laxitive - but rather a digestive ad.. without it, I stop completely! I also have tried adding fiber supplements, but couldn't find a happy area! I eat a ton of fiber everyday, and with that, the Miralax and fleet - I am able to go. If I couldn't go, I'd be miserable and heading back to the doctors!

Shannon, yes - we do sound alike in our issues! My whole pelvic floor was damaged in childbirth 21 yrs ago, and my prolapses just became worse. My colon is extremely redundant, and "floppy" which is part of the reason OR maybe the reason I suffer from constipation. The MiraLax has been the only help I have found that works for me! For me, my redundant colon was too long, and floppy. I had surgery in March to repair my prolapses.. a hysterectomy, sacral colpopexy (attached the vaginal vault to my backbone) rectopexy - to pull up the prolapsing rectum and a bladder sling. After that surgery, because my sigmoid was so redundant, it flopped.. plus my rectum was still prolapsing - causing me to really hard a hard time having a BM! I just couldn't get it out without excessive straining. Anyway, they removed my entire sigmoid and upper part of the rectum (because it too was stretched and redundant) and I had another rectopexy (they attach/sew the rectum to the backbone). Half of all the sitz markers were stuck in that area... my x-rays showed and noted that my entire colon was filled with excessive stool.. even on the days I had a BM! It was just backing up... I do feel the surgery helped some (not that much!), as my poo was very flat before, and now it looks more normal the last couple of weeks. I just don't know.. I took a mirror this AM and looked at my va-jj.. and when I strained, I saw tissue from inside my vagina protrude. That's a prolapse!! I don't know if my rectocele is back some, but I determined that my bladder is prolapsed again, and that has happened since my last surgery in Dec.!! Boo hoo. Maybe that is the reason for my bladder issues. It just doesn't seem to end, but again.. I plan on living the way I am till I just can't stand things anymore.

Hodaya, I don't want to put pressure on you, but I sure would like to encourage you to at least try the MiraLax. At least mention it to your doctor, it would be worth a try to try for just 2 weeks. I couldn't live without it now. I wish I had it years ago. I don't know if it will always work, but for now it has made life manageable.
Posted 2/15/2010 3:49 AM (GMT 0)

Hi Jenise,

Yeah, I'm having a blast doing ballroom dancing on the cruise ship with a dance host who is leaving in 2 days.  BUT it has been really cool.  That is about all the "romancing" I can do, but, hey at least I'm alive and cruising.  I have another month of the cruise.  We are currently a stop away from Buenos Aires.  I will catch up with all the new people when I get back.  Weather is turning warm again.  Rosemary

Posted 2/16/2010 12:03 AM (GMT 0)
Wow, the room is slow...

I didn't take miralax for one day and am all backed up. When does it ever end?

Jenise, maybe you are still healing from the surgery???? I surely hope you don't have another prolapse. UGH Thank GOD for Miralax, right? Now if I just didn't have to take so much and so often to produce a bm. Maybe it is our slow colons causing this, ya think?

I feel you about just trying not to let it run your life. I am trying to figure out a way to do that, but can't! My problem is so extreme now I just don't know what to do.

No, my doctor has not called me back yet. That is one thing I DID NOT like about him is he is slow getting back to me. But, he knows his stuff, so I am just going to be patient. My job is short drivers, so, I really don't see how I can take off for biofeedback just now. But, I need to do it before the summer if I plan on having the BCIR!
Posted 2/16/2010 2:41 AM (GMT 0)

Hi Girls,

Didn't ever get to read up on many posts but did see that most are still having many constipation issues; I'm so sad for all of you! I so want you to have the success from this surgery that I have had.  Not every day is perfect and of course I have to watch my diet always but if I don't go for a couple of days, miralax works wonders! 

I am still sick from last Friday 2 weeks ago; today was the first day I wasn't running a low grade temp. and I never run a temp. I think between school, my daughters and this whole stent thing, stress just wore me down.  My asthma has really gotten the best of me and that's what is taking a loooooong time to clear up, well, that and the sinus thing, I think it was the wrong move to stop my allergy shots but we'll have to reassess that situation later.

I'm going to PT twice a week bc my shoulder is frozen from one of my kidney surgeries this past summer; I don't know if they pulled on it, or dropped me or what but it hurt quite badly when I woke up and bc I produce a lot of scar tissue it has become frozen.  So add that to the stent and I don't sleep through any night!  I'm REALLY looking forward to this summer when this whole kidney issue is over and done with!  And I vowed I would NOT have shoulder surgery (been there done that!-last one wasn't my fault either!) so I told my therapist she'd better fix it!

Ok-I think I've vented and whined long enough! So sorry girls:( but you're the only ones I can truly complain too.  Anyway, Lizzie, hoping and praying you're getting better each and every day. Love you always girl!

Hodaya-take the miralax!!!!!  I take it too; it won't hurt you!  Love you!

Janie-So glad you are finally having good days!!!!:) Love & Hugs:)

Jenise-Stick with the miralax!  So wish your dr would have taken everything out but can't change the past. praying for you! Hugs and love:)

Marisa & Jen-Praying that you both are ok.  Praying for you.  Love & Hugs:)

Tracy-Praying that you will get what you need soon.  The school year is going by quickly but not quick enough for those of us that need medical help!  Praying that you can make it until this summer.  Hugs & love coming your way:)

Rosemary-Your trip sounds absolutely amazing!!  Enjoy and savor each and every moment!! Praying that you continue to stay healthy and enjoy your trip!!!!

Welcome to all the newbees and hope everyone is doing well if I missed you.

Always in my prayers,

Judy

Posted 2/16/2010 3:56 AM (GMT 0)
Judy, i love hearing from you honey! so sorry you're having such a hard time with so many problems. gosh.. when i hear about all that you're going through, i feel i should be grateful for what i have. i feel so bad for you and i hope and pray everything is resolved for you soon, you're too sweet of a person to go through all of this. love you very very very much!!!!
Posted 2/16/2010 1:28 PM (GMT 0)
Does anyone know if Miralax comes in pill form? I can't stomach drinking any more stuff. The last Golytly did me in.

Hope everyone is feeling better. I'm new to the boards so I am trying to catch up. You all are a wealth of information and support. It isn't everyone you can talk poop to! I never would have thought that constipation could be so debilitating and life altering. There is a lady in my office who had colon cancer, so she kind of understands. But, she just found out her cancer is back - in her liver - so I feel my problems are minor compared to hers. Last summer I spent most of it in bed because I was in too much pain to do much else. I am hoping I will get some answers from the new doc on Friday.

Take care.

KC
Posted 2/16/2010 2:49 PM (GMT 0)

Hi all,

I have been trying to catch up on all the posts.  I see that there are many new people on here that are having the same problems.  You have found a great site with very supportive people. 

It sounds like a lot of us who had a total colectomy are still having constipation issues.  I am taking Miralax every other day and of course use suppositories to get things started just about every time. 

During my last hospital stay they did another small bowel follow through and it showed that slow transit has now affected my small intestine.  They do have me on two new meds for gastoparesis that is working.  I am finally gaining weight.  Now I am working on getting my energry back. 

I still have unexplained abominal pain that comes and goes with varied intensity.

Thinking and praying for you all.

Jen

Posted 2/16/2010 5:38 PM (GMT 0)
Thank you all so much for getting back to me with my questions. I have to admit, I am getting a little concerned about even having a surgery since it seems like so many of you are still having problems. Now granted at this point, I think I would rather have a bag than the cramping and conforming my life to BM's. I honestly would rather birth other peoples children for them once a month than go through this. I am worried that taking the miralax may have screwed up my marker test. Do they ask you what your BM's were like during the test? When I had my last xray...there were some rings in the appendix area and the xray was day four. You could see stool lined up all the way up the ascending colon and the rings were at the bottom. Does the radiologist note this in his notes or do they only make mention of the rings? I am not sure why most of the rings made it through at least to the bottom...only to have some still left right where they leave the small bowel. All this waiting makes me nuts. I am so not a patient person. Especially when I can't take my WONDERFUL Miralax. The other night I was in so much pain in my right side that I couldn't find a comfortable position to sleep in. I could feel my colon sticking out and it was hard as a rock all the way up to my rib cage. I have been able to go to the bathroom some more but it is horrible horrible cramping. But whatever. Time will tell what I need done right?

KC...I have never seen Miralax in pill form. However, I do find it helpful to put it in my coffee. When I am really cramping and nauseated, putting it in something warm makes it so much easier to take. Have you tried that?

Jen...what surgery did you have? I hope the doctor can give you some answers on Friday. So sorry to hear about your friend at work with the cancer spreading. My father in law just passed away last month from liver cancer with an unknown primary. His liver was filled with tumors making it 3 times the normal size of a regular liver. He had no idea he was even sick. All in all he was only sick for 18 days before God brought him home.

Judy...I can't believe I even complain with my problems. Yours seem to be never ending. I really hope you are coming to an end with all of them and my prayers are with you.

Jenise, I am not sure what cause my organs to prolapse all of a sudden. The doctor thinks that my colon being so long and pushing on everything is causing most of my problems. I did have everything tied to my tailbone but he released it with the last surgery thinking that this was what was causing all my issues...not having any idea I had a colon problem. I also read my report from surgery and it appears as though my bladder and my uterus was also prolapsing. The bladder not too bad but my uterus was 50 percent down my cervical canal. Why wouldn't he have mentioned this to me in the first place. Seems as though prolapses just get worse with time so why not fix it? Who knows. I hope your bladder is not prolapsing again. Did they do the tvt on you?

Shannon
Posted 2/16/2010 6:47 PM (GMT 0)
Shannon, you know, it's a funny thing.. when i had my last zits marker test, my first x ray was on day 5 and it showed most of the markers were at the bottom, it looked like (to me anyway) that most of them were in the sigmoid area. then when i had the next x ray on day 7, it looked like they were all scattered throughout the descending colon and not even reaching the sigmoid yet!!!!! so i was SO confused about that, i mean how can they reach the simoid.. and then go back up to the descending colon...?????? LOL! but my gi then explained it to me - turns out my transevese colon was all prolapsed down to my pelvic!!! and the location of the markers at the first x ray was actually in the transeverse colon.. only, b/c it was prolapsed all the way down to my pelvic, it looked like the markers were in the sigmoid, but actually they were in the transeverse.. i don't know if that's the case with you, but it's not that far fetched if it is, it's very common for ppl with CI to have a prolapsed transeverse colon. can't wait to hear abuot your last x ray results and your dr's diagnosis. pls let us know.
✚ New Topic locked
1234567891011