Total Colectomy Part 34

Rosemary, that's exactly what i was saying.. as i said, the situation is this, it's either i'm totally constipated even if i eat a soft-liquid diet, or i find something to make things move, but that makes me be bound to the b/r for hrs every day, cause the bms are devided and just tiny winy bit each time. it's like i go, then after 5 mins i have to go again, and 5 mins later again, then maybe 10-15 mins later again etc etc and it goes on like this for about 3 hrs in the morning and for 2-4 hrs in the evening (that's only after i took a laxative - w/o it i won't go). and even after i finish, there's still more inside - watery stools that is stuck in my lower abd and won't come out till evening, but by the time that comes out, i have new stools stuck in my lower abd, very close to my rectum that won't come into the rectum. i'm not sure either what's going on in there, i may have the anastomsis site checked for narrowing and maybe a test to see if there are any probs with my small intestine, but honestly, i think that whatever the reason is, no matter what i do to fix it, it won't change the devided bms prob - it's every 5 mins for the first half hr, then 15-20 mins for the next hr and then maybe one last time after another half hr-hr and it's just a tiny bit each time... grrrrrr ANOYING!!! so as i said, if the rectum's functioning is good, where then is the prob? why can't i go w/o taking large amts of laxatives? why the bms are devided to so many, if the rectum is able to empty? and why am i getting these incontinence issues too often lately?? when i talked to my drs after i was addmited in Feb for patial obstruction, they didn't want to do any tests and told me i should go for the bag...... ugh, they made me so mad, cause i wanted to do some tests and had hope maybe it can be fixed, but now i'm thinking, maybe they're right and there's nothing to do about this. Gilda, wow what a mess.. i'm glad they finally found it though and fixed it, maybe now with time things will get better for you. be patient, i believe that now that your intestines are not infected there's much better chance they will slow down soon. it may take few months though. feel good!

Hodaya, I emailed the pics. Go take a look at them.

I understand about the divided moves. See, what I do is this...I insert suppositories, 2 or 3 at a time, then I stand up, smoke a cigarette, and walk around....when my rectum feels sufficiently irritated, I then sit down on the toilet. If I am lucky, the stool will come down into the lower rectum where I can reach it. UGH....then my bathroom acrobats begins. This takes hours everyday. I also go a tiny amount at a time....this is very irritating.

As far as the incontinence...when did this start?

Have you tried enemas? I have read where many women with incontinence issues will use an enema before they leave the house to ensure that the rectum is empty??? Since you can empty on the defogram, I would think an enema would work with you. My problem is the enema can't go up into the rectum because of the curve in the rectum. It is basically retained in the anus.

Have you tried glycerin suppositories....if not, go buy some and give them a try.

My opinion to you is this....try everything you can think of before resorting to an ileostomy. Or, if you do have an ileostomy, have a temporary one just in case you absolutely hate it. Atleast we have that luxury, unlike Rosemary who had to have a permanent one because she was near death.

Hi Tracy,

We must be on at the same time. Good idea for Hodaya to try the temporary loop if she can. Rosemary

Hi Hodaya,

Good. Glad you're going to ask about the anastomosis check. With your rectum working now, if all you needed was dilation of the anastomosis, then it would be too bad to get a bag, hate it, then feel bad about not having tried every option first.

I totally understand the being tired of the issue and tired of tests. I can sooooo relate. But each surgery does come with its own set of complications and does form scar tissue to some degree.

Keep in mind that the loop ileostomy has the risk of having poop travel back down through the wrong end of the small intestine back into the colon and rectum, whereas an end ileostomy the poop is guaranteed to come out through the stoma. Ask your doc about this potential issue if he or you feel your ostomy would be permanent. For a permanent ileo an end ileostomy is best. Avoids 2 surgeries.

Best of luck. Rosemary

Hi everyone,

Hodaya,
I'm glad you decided to ask about more testing before deciding on surgery. I totally understand how you feel. I have alot of the same issues. I was thinking of you tonight because I drank prune juice and have been running to the bathroom about 15 times in the last 3 hours. I have a cold and have taken just a little codeine cough syrup, but that stuff stops me up so much that the miralax didn't work well. I'm sick of this too, but I'm not ready for an ileostomy yet.... I have an appt. with my surgeon in June, and I'm going to ask about the narrowing of anastomosis. How do they check this? I know he did an exam shortly after surgery and said the connection was fine. Is that the only test? I thought my problem was either my rectocele or just my pelvic floor issues. The strange thing is that sometimes I take a lomotil if we're going out for the evening and I know I'm going to eat something, and the lomotil will keep me from getting the rectal pressure of having to go for several hours. When I drink the miralax and finally go, I go alot instead of just the small amounts....it's like it's all backed up and all comes out in just a couple trips to the bathroom instead of several trips. I don't like to take lomotil; it seems sort of counter productive to take lomotil to not have to go, and then miralax to go just a few hours later. I only do this once in awhile, but it does seem to help as far as emptying more quickly!

Tracy, do you think you're going to have the STARR proceure? My doctor mentioned it but, wanted me to wait a year after my colectomy for any more surgery. I got the impression that he wasn't sure it would solve my emptying issues. My year anniversary was March, so when I see him in June I'm going to ask about it again. I don't want another surgery, and I'm not entirely sure the rectocele is my problem, but I'm interested in what he says about it.

Rosemary, I think when I was talking about rectocele surgery a few months ago you thought maybe rectal surgery wasn't a good idea. Do you think if I had the STARR procedure it could possibly make emptying worse? I'm so confused about what to do. I can live like I am, but it's challenging. If I'm at work, I just don't eat during the day, and if we're out I either don't eat or I take a lomotil. When I'm home it's much easier, but always waiting to go, or running to the bathroom is so annoying.

My poor husband has suffered, too. It's very had to think about being intimate when you don't know if you'll get the urge to run to the bathroom. Does anyone else have this problem?

Judy,
So glad to hear from you and I'm so glad things are finally going well for you. You're a special lady and you deserve to finally start feeling well.

Janie

I am so emotionally a mess for this surgery and yes, Rosemary, I would think they would go to a end ileo if for some reason they cannot fix the valve since I no longer have a rectun I have no other choice :) I skimmed though everyones posts, but I will read more tomorrow. I just wanted to tell you all I love you and I love talking to all of you.....so this week esp, if you have time call me or text me.....if I do not answer its usually becuase i am sleeping and trying to listen to you all and get rest this week, I have some plans to see friends in the evenings for emotional support, good positive friends and i really think it will help. I just do not know what to do besides pray and try to just take care of me this week. Thursday I leave at 5 am....I will of course bring my computer and my phone and keep you all posted as to when the surgery is Friday. I love you all so much. I ended up going to the bday party last night, saw a lot of friends I have not seen in many many months and they said i just look so frail and "not like me" but they were very supportive and some did not even know wha has been going on.....i told them all about you all and how much i love each of you and how I could have never made it through this without you all......I LOVE U!!!!!

Hodaya, so glad your back.

Tracy-miss hearing from you....

love to you all

lizzie

Hoddaya,

this is a very interesting article that may consider your problem despite of apparently normal rectal function...
http://resources.metapress.com/pdf-preview.axd?code=v0211587625w5812&size=largest
http://gut.bmj.com/content/31/11/1284.abstract?sid=443a3fe2-7012-4c75-9cf7-d8044723822b

Post Edited (pelztier86) : 5/3/2010 5:30:18 AM (GMT-6)

Rosemary, thanks so much for all your advice and support, it's really appreciated! Janie, the anastomosis is checked with a scope, rectoscopy i think. they go in with that tiny camera and able to see the site of anastomosis, you know, like a colonoscopy but a very short one. you and i are so much alike, it's either we're constipated or going many many times for hrs. when you take the lomotil (we don't have it in israel unfortunately, but i think we have something close to that) does it cause you pain, cramps, makes you feel uncomfortable? do you get gassy? i started to have bad gas lately. i wonder if i have a bag, will i still be this gasy..? my bag will blow up at least 10 times a day if i have the gas i'm having lately lol! if you have only a 1 cm rectocele and no other diagnosed issues (cause you know, i'm possitive there are some issues that drs just don't know how to diagnose, or don't even know about ) your dr won't operate for just that, and i really doubt this small rectocele is what causing you all these troubles. i don't know what's wrong with my rectum either, i just can't go. also, while having a bm, i feel the pressure on the vagina and after i finish, i still feel an uncomfortable feeling in the vagina and it lasts for hrs. i also feel my bladder is not what it used to be at all, so this is another reason why i want to have the bag, cause i know for sure that with timr my whole pelvic will drop big time and i want to avoid bladder issues and all kinds of issues and having surgery to lift it..... no way!!! i want to save the rest of my pelvic and the sooner the better. about the STARR, well i feel it helped my rectum big time (yeah Rosemary, that someone is me). if i had the colectomy in time and not waiting so long, the rectocele wouldn't have come back the way it did. Janie, you do what you feel most comfortable with. if you can still manage this way, maybe it's best, maybe you got it figured out more than me, i mean you had lots of patience to think over and over and trying all sorts of combinations, heck you've been experimenting this for over a yr now... i can't do this anymore, nothing works right for me. Lizzie, you're a very strong lady and you're gonna make it! just always know there's always a way out of all of this. i hope and pray for you to be well again. i'll give you a call before you leave to the hosp. love you so much!!! Sarah, you're so precious!! thanks so much for the article honey!! i'm very curious to read it. Jenise, you're absolutely right! passing the barium is much easier than the stools, and it's def not the same as having a bm. first of all the barium slides easier, and second the stools is coming from above the rectum and the barium is inserted from down there, and for me it usually feels like the stools is just having very hard time to just get into the rectum, you see what i mean? so no, it's not the same at all and more over, i told this to the radiologist who did the defogram and he totally agreed with me!!! about the incontinence, well i didn't have incontinence till last week, it happened every day and several times a day.... im not sure why this is happening to me now. Gilda, how are you doing?

Hodaya,

You remind me of myself so much when I had worked on my original problem for well over a year then went for the sigmoid resection in 2006 because I was told by 3 places that that's what I needed, then the rest of the story fell as it did. I can soooo relate to your being sick and tired of all this trying this and that. Looking back I, of course, wish I'd just kept my original problem or tried more stuff for longer. BUT just wanted to let you know that, despite all my "words of wisdom" as Mother Hen, on an emotional level I can sooooooo relate to you. Spending all this time on pooping and having to plan ones life around it just gets to be too much after awhile. So just wanted you to know I can relate.

Rosemary

Hodaya,
Yes, it sounds like we're very much alike. Like you, I tried juice (grape and then prune) and that kept me running to the bathroom all the time, and always liquid. I told my doctor I couldn't live like that, and that's when I tried miralax. That was October, and honestly without the Miralax I think I would also have asked for an ileostomy by now. When I drink juice I do have problems with incontinence. With Miralax, I don't. I may have to go a few times but I can control it.

I hope and pray miralax will work for you. Are you taking it twice a day? I took it twice a day for 3 or 4 days before I noticed it working (in the meantime I was still drinking prune juice). When it kicked in, I can't explain it, but I had the urge to go without it being so urgent, like with the prune juice. I'm not thrilled with the way things are, but I can live this way by just not eating alot when I'm away from home, or taking lomotil to keep me from having to go. Lomotil doesn't cause any discomfort for me. I don't have alot of gas, unless I eat alot of carbs. Salads and watermelon make me very bloated and take a long time to go through me, but I do eat them occasionally.

The thing I don't understand is that if I don't take the miralax, I feel like the food has travelled through the small intestine, but gets stuck in the rectum, which causes terrible rectal pressure and pain. It only takes a couple hours for me to feel like this. If I take miralax, I have to be near a bathroom for a few hours. I don't have to run to the bathroom, but I need to know where it is:).

While things aren't perfect, I don't want another surgery and I really don't want to have to have a stoma unless I have to. On a day to day basis, I'm ok. It's just when we socialize I have to do some planning.....and even if I take a lomotil and go out, I don't eat the way I would like to:( We're planning a trip to Vegas, or a cruise. I love cruising, but being tempted to eat all day would be horrible!! I think we're going to do Vegas instead.

Also, I did have cystocele surgery a year before my colectomy; my bladder was actually coming out through my vagina! I think that was because of my 10+ lb baby I had years ago. I also have mesh; I wonder if that could be a problem with my emptying? How would I find that out???>

Rosemary,

I really appreciate all your help. I know there have been days when I've felt like Hodaya and just want to go ahead and get the stoma, but then I realize that is a big big decision, and that having surgery again won't stop me from having problems. I know it will just be a different set of problems. I'm very fortunate in that the miralax does help me (at least for now and I pray for it to continue to help!) and I can live with it. I just sometimes have to complain here, though:(

Marisa,
Glad you're feeling better. How much miralax are you taking, and what other laxatives? Do you have to take it daily? Does it make you go several times, or just a couple times a day? I was having alot of pain for a few days after eating, but that seems to have gone away. I wonder if I may have had a small blockage? Whatever it was, I hope it doesn't come back, because it was very painful! I do still have my gallbladder, but the pain was only in my abdomen and never went around my back like I've read gallbladder pain often does.

Jenise,
I often sit to pee and poo comes out too!! I never mind that though, cos it's one less trip I'll have to make later!

Lizzie,
Sorry I missed you on the phone the other day, but just know I'm thinking about you. Good luck sweetie. I hope to hear that everything goes smoothly.

Janie

Hoddaya,

your description of the feeling that the stools don't make it into the rectum and get stuck right above the rectum would fit the theoyr of a rectal neuropathic motor disorder which causes delayed and slow/insufficient filling of the rectal tube. I also had experinced this feeling: in the beginning when I tried to cope with suppositories I had to wait several hours whereas normal people would have a strong urge already after 5 minutes. I had the (right) impression that the stools would take a very long time to be propelled THROUGH the rectum from the upper to the lower rectum/anal canal. If I went to early I would get nothing out. I had to wait for a massive urge which was actually not an urge sensation but retcal spasms/uncoordinated contractions that after extensive waiting casually went into the "right" direction downwards after spreading in all other directions within the rectum leaving me just in pain without any chance for passing anything..only if I caught this "right" moment I was able to pass something but never without digital manipulation. I have/had a very extreme case of rectal inertia.

I wrote this description for someone who wanted to know my expereinces with rectal inertia/spasms:
The rectal spasms feel as if the rectum was going to twist around itself and the stools/gas/liquids got stuck and instead of moving the waste forward/out it just pushes the stools for- and backwards , and they come without any warning like you said. The only way I could empty a little little bit was by chance when I pressed on the back n the right moment and manually helped the stools to come out. If I let this moment/second passed when the spasms had accidently pushed the stools in the right direction then there was no possibility for me to get something out for hours/sometimes days before there was another chance. Keep in mind that this was not only when I should pass stools but also gas which I had teribble trouble to get it even to the rectum since it was trapped in the long/loopy/elongated colon.

As far as myself is concerned..I don't write to often about me but now I have the feeling that NOTHING works for ma, that everyone and everything are acting against me and my "plannings"..I should avoid making plannings at all even if they are onyl rudimentary.
I am so disappointed and frustrated...again the staying in the urologic clinic which would be so important to make a step forward in the ever increasing bladder issue has to be postponed due to a UTI. I have been afriad of this, so I went three times to different docs to get my urine tested especially as I was symptomatic. But they only did a fast test which only includes searching for white/red blood cells and they did no urine culture which should show growth of bacteria even after some time and there are less bacteria. Well finally in the third fast test a UTI was quite likely by increased white blood cells.
I can feel the symptoms/UTI arise even before it can be officially confirmed since most of my UTI begin with the urethra and the bacteria take some time before they go up into the bladder and catheter.

Well, they can't do the tests when I have a UTI since this can falsify my test results. I did contact the facility I am planned to get admitted and the doc suggested an antibiosis. Since the last fast test was already done on Friday there was no chance to get a urine culture done which could specify the sensitive antibiotics. I did take some antibiotics according to the last sensitive report from back in January and apparently I have been developing many resistences in the meantime, probably subsequently to the recurrent iv-antibiotics due to the lhickman cather infection.
I doubt if there is something beside iv-antiniotics that is still sensitive.
Anyway the urine is not clear, so the testing must be postponed, it will take place next week but I am almost sure that another thing will counteract this plan. I am so fed up an frustrated. The bladder issue and the infections therefore become a very seroius issue leaving me probably with no other choice than iv-antibiosis to prevent spreading and a new infection of my hickman catheter.

I have waited so long for this staying since my surgery denial in January. I have lived with the hope to go there and to make a step forward.
It certainly begins promising- guess sarcasm and irony is all what is left and I need to survive emotionllay..nonetheless I am physically and emotionalyy so spent, I can't admit that often.

Sorry for venting, I hope at least some of you have/had a better time
Sarah

Post Edited (pelztier86) : 5/3/2010 8:05:27 PM (GMT-6)

Sarah, I am so sorry you are going through so much. I will pray for you and that you will find a doctor that can help you.This "inertia" business is the pits. And as I have been reading, it doesn't seem like there is enough going on in the research of motility, whether it is the colon, small intestine, stomach, etc. I have seen a few doctors who didn't even know what colonic inertia was and when I tried to explain it to them they said, "oh, it is from taking too many laxatives"! No, you jack ass, it is not! Please try to keep your chin up and keep posting here. We are here to support you as much as we can. :)

Rosemary, all of us on this board understand each other best than anyone can, we all went through and still are the same rout and know how this can affect one's life. that's why it's so great we have each other! Marisa, so glad you're doing well honey! Tracy, the gas prob is gone now THANKULLY!! boy it was horrible, and i think i know now why it happened, it was b/c of some fiberous crakers i ate, just 2-3 every day, but i know i can't eat fiberous foods, fiber makes me SO gasy. so now i quit eating them and the gas totally gone :) Janie, yes i'm taking the miralax twice a day. it hasn't kicked in yet, i've been taking it for 4 days now, still waiting... :( if you feel the food travels fast in you system, that's great, looks like your smalls are working right :) and at least that's a very good thing. the only reason you still need laxatives is simply the rectum, this small peace of colon left is why you still need laxatives, cause like the rest of the colon, this small part (rectum) is also not functioning right. honey, i hope it keeps working for you forever. if it'll also work for me, i'll stick to it too! my gosh, i just dread the thought of another surgery. about the mesh, you said you're seeing you surgoen soon, right? so maybe you can ask him about this? Sarah, pls feel free to vent, my gosh, you've been through way too much honey, for such a young age... and yet, you sound so mature and knowlagable, i really admire your strength, i just really hope you can finally have some rest.... gosh you deserve a rest from all of this mess. you know, i once thought too that maybe suppositories can help.. well i took one and waited an hr - nothing happened, so i took 2 and waited an hr - nothing. i took 2 and waited 4 hrs - nothing. so then i told my mom, you know what, maybe i'll take 2 just before bed, go to sleep and in the morning i'd may be lucky :)))) but guess what...? again - absolutely nothing happened!!! i was so frustrated at the time, lol i didn't realize it then. i didn't know yet how sever my condition is.. ): yep, you're right, i often laugh at my self to emotionally mentally survive, it's much easier than crying ;) lol, as you said, that's all that's left. i hope one day you log on here and tell us all that you're doing great and healthy!! i hope it happens to all of us. Lori, hey thanks for the names of the tests, it's very helpful!! so good to have you all helping with all this info! you girls will just always have a special place in my heart! i hope you're feeling better Lori, i really hated to read about all the difficulties you've been having lately, i would fall appart by now too if i were you.. i just hope you're holding on as best you can honey, pls stay strong.