HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 25

Support Forums
>
Ostomies
✚ New Topic locked
1 2 3 4 5 6 7 8 9 10 11
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/28/2009 11:38 AM (GMT 0)
Jenise,

My doctor said that eventually I would go about 3 times a day. But that is unfortuanately not happening. I drank prune juice last night and went one good time finally! I am going to drink some more today. maybe that is what I will always have to do. Thanks for all the info.!
Christy
Posted 9/28/2009 11:44 AM (GMT 0)
Lizzie I am thinking about you and praying that the reversal is a success! I pray that once you recover you will feel better:)
Posted 9/28/2009 2:49 PM (GMT 0)
Okay, I am changing doctors. I will see the new colorectal doctor October 9th. I am so excited that he could get me in on my day off. YAY I am very worried that he is going to ask me to have a barium enema. Is it that bad? I AM TERRIFIED of that. I already refused to get this test. Tracy
Posted 9/28/2009 2:52 PM (GMT 0)
Christy,

We sound alot alike, although I may go several times a day, but literally the tiniest amount.  However, when I drink prune juice it makes me have diarrhea and go many times for about 2 or 3 hours.  It's totally liquidy.

I have an appt. with my surgeon on Thursday.  I'm hoping like crazy that my problem is my rectocele and it can be repaired.  Most of the time I'm so uncomfortable because my rectum feels full...do you have that feeling too?  Every now and then I get uncomfortable in my abdomen when I can't go, but mostly it's my rectum.

Lizzie,

Thinking about you and praying for you sweetie!

Hugs to everyone else...gotta work!!

Janie

Posted 9/28/2009 5:30 PM (GMT 0)
Janie,

I feel such relief just knowing someone feels the same way I do. That is exactly what is going on with me! I drank prune juice last night and finally had diarrhea once!! I felt better immediately.
Posted 9/28/2009 7:06 PM (GMT 0)
Christy and Janie, I hope you figure out what is going on! I do know a rectocele can make you feel like you still have to go...

Speaking of figuring out what is going.. my surgeon called this morning and now I don't know what the heck is going on! He wants to meet with my uro-gyn, and all I got from the phone conversation is that he didn't want to have the wrong procedure done on me.. and something about the mesh causing it to look like a sigmoid prolapse... but may not be a true one, and about the rectocele causing issues... So.. I asked if I should cancel my pre-op and OR and he said NO.. don't cancel anything.. but now I am clueless as to what he or maybe they will be doing!
Posted 9/28/2009 7:50 PM (GMT 0)
Jenise, thanks so much love! i can't tell you how much your support means to me ♥♥hugs to you too♥♥ i keep reminding myself that i'll soon be back to work and this post op blues will go away. i am doing o.k. some days are better than others. when i eat too much, then i'm miserable, but if i eat less and devide my drinking to little sips during the day (instead of drinking fast, just a small sip every few minutes.... like an IV lol), then it helps my bms big time. this NEVER worked before surgery. also, it may be that too much bread is bad for us, even post op. about your pelvic floor descent, isn't it fixable? i mean you said it's something you're gonna have to live with.... but why?? did your surgeon say it can't be fixed at all?? i do hope the surgery over comes your pelvic probs and you can have enough relief. i think the reason we all go little each time is definitely b/c of we all have some degree of PFD. a normal bm should be A LOT more than just 2 spoons each time, cause first of all, i do remember how things were for me till the age of 20, before this whole prob started, i mean they were always such BIG BMS LOL, and second, everyone in my family tells me how much they manage to get out when they go lol, and it's A LOT!!!!!!! LOL. i hope the MOM helps you so you can enjoy your cruise. i think the surgery can give you relief even with the PFD. i do have PFD, but it's easier to handle now. you're right, it's not perfect and some days i can have that feeling like Janie's, that something's there but it's not coming out. it's better than prior to surgery, but it's still a pain in the.... it's VERY uncomfortalbe! my dearest Judy, thanks so much, and i think you're right, that's why i'm gonna try limit my bread/wheat intake for a while and see how it works, i'm gonna try eat oat bread instead, i'll have to check if it's not too fiberous tho. i'll sure let you know how it goes. Christy.... that's what i'm always thinking.. what is happening to us??? why can't we be normal???? it's making me so sad. i hope you get some answers on your dr's visit. i can't wait to hear what he thinks of all this. going just one spoonful once a day is miserable. i'm praying for you honey! Tracy... so happy you got squized in to that new dr, GOOD LUCK!! don't be scared. if he does give you barium enema, then make sure you drink LOTS AND LOTS of water afterwards, take your lax' and it should be o.k. i did all that + a colonic right at the same day i did the barium enema and that cleaned me out completely. maybe it will be worth doing it just this once. think about it. waiting anxiously for your update. Janie.... (((HUGS))) i get that full rectum feeling a lot too, i know.. it's so uncomfortable. for me it feels like there's something but not definite, like the feeling comes and goes for hrs and it drives me crazy!!! good luck with your dr! Lizzie... as far as i remember, your surgery was moved to the 29th, right? anyway i'm so glad you had fun on the weekend, love you honey and praying for you! Jen.. miss you, hope you're hanging in there.
Posted 9/28/2009 7:51 PM (GMT 0)
Tracy I had the barium enema test in August, and I was also dreading it. It wasn't as bad as what I was expecting but it also not a walk in the park. I thought the worst part was when they put the tube in because it made me feel like I needed to have a bowel movement PRONTO! It was kind of like a burning sensation with the strong urge to push. That feeling passed after about 1 minute. They kept telling me to relax but that was virtually impossible. When they put the barium in I had a little cramping and a full feeling but really no pain. Then they move you from side to side and on your back all the while snapping x-rays. They also take this paddle thing and push on your abdomen at the same time. Once they finished I went to the restroom and expelled the barium then I had to have x-rays completed again of the empty colon. They also took pics prior to putting in the barium. So I have lots and lots of pics of my colon at all different angles.

So basically it was not painful just very uncomfortable. It really did give great pics for the surgeon so I would recomment having it for that reason. They discovered through the x-rays that my colon on right side was laying down in my pelvis. So it was good that I did it.

Good luck and just know that as bad as the tests we have to take seem they will help us in the long run.

Jenise I hope they get things worked out. I would be worried to if they were getting wishy washy on me. Just make sure you take matters into your on hands and question them to death.

Hope everyone else is well
Jen
Posted 9/28/2009 7:53 PM (GMT 0)
gosh Jenise, i didn't see your last post... this is so confusing, i hope your drs can figure this out. but it does sound like they being very thorough, which is a good thing! keep us posted!
Posted 9/28/2009 8:34 PM (GMT 0)

2b ColonFree said...
smarty,
this surgery can really help you. the diaherra is only at the first few weeks, but soon enough it settles down, the small intestines learns the colon's job and the diaherra slows down significantly.

i don't know which stories you've heard.... did those ppl who ended up with 30 times diaherra a day have the surgery for colonic inertia? cause if not, then the results are totally different for ppl who do it for crohns, colitis or colon cancer. with colonic inertia more than 90% of cases never end up with such outcome, just the opposite actually, not only that we don't get the sever diaherra but with colonic inertia the probability is that after a certain period of time, the constipation may unfortunately be back..... which did happen to some women who had the surgery.

i'm worried about having constipation again rather than having diaherra. if you read back, you'll find out non of us had sever diaherra, and if so, it was only for a short period of time after surgery and then it slowed down, i already have only 5-8 bms a day and the stools it really formed. so really, you have NOTHING to worry about in this matter.

with all due respect to your brother, but he doesn't know anything about colonic inertia, and you are the one who owe it to youself and check all of this thoroughly in order to be able to know and decide what's right for you.

2b colonFree

Thank you for your feedback In calgary, the doctor doesn't want to do surgery for me. I have to come back to do surgery, where you do surgery ? How much ? In Hong Kong, I check the price is around $35-40,000 canadian dollar. If I cannot recover, I can't concentrate at work and cann't take care of my son. I feel very suffer always. Thanks for your listening.

Your feedback is highly appreciated.
Thank you Thank you Thank you.




i truly wish you all the best with finding a dr and making the decision.

Tracy.... thanks. today i'm confused again. i thought the tofu was giving me the bad blockage and gass, but after i haven't eaten it for at least a week, i'm having a blockage again. so i don't know anymore if it's the tofu. i did notice it happened on saturday, when we eat a lot of bread, so....... maybe it was just the bread and not the tofu....... ugh!!!!!! i'm gonna try not eating bread and eat tofu again for a few days again and see how it works, figuring out your diet post op is a challenge!!!

and yes hummus is a kind of bean, i'm not sure about it, i havn't tried eating it yet. before surgery it used to give THE worse bloating and gass, more than ANYTHING ELSE i ate, so i'm still very very scared of trying that one.

don't be so hard on yourself, Tracy. it's not your fault you have this problem, and dealing with this condition is truly life consuming. there are lots of sick ppl in the world and they all miss a lot of life b/c of their illnesses. it's hard, but we must realize that we have a brob. but hopefully this prob can be solved, and with G-D's will for YOU TOO!!

Shmuel, hadassa is one the best hospitals in israel. how nice to meet another israeli on here and i love the way you named your puppy!

Posted 9/28/2009 9:02 PM (GMT 0)
smarty, my heart breaks for you. i'm so sorry it's so hard to find a dr where you live. i live in israel and had the surgery there. not all drs are willing to do this surgery for "simply" constipation, but actually it's not a simple condition at all and it's not just regular constipation, but much more than that, that's what most drs unfortunately still don't realize. i really hope and pray you can find a way to have this surgery, cause i have no doubt it can change your life for the better significantly and the sooner you do it the better. i waited too long to have it, and all this waiting only caused further damage to my pelvic floor :o( if i went 1-2 yrs earlier, i would have saved the added damage i have now. don't give up and keep looking for a dr that WILL help you, i believe that with persistance you will find that dr, you must believe and never lose hope, o.k? thining of you and praying for you, sweetie!
Posted 9/28/2009 10:06 PM (GMT 0)
what's the difference between a barium enema & a defecogram.. or are they the same?

This is going to drive me crazy until I hear back from the surgeon. I'm glad he is being thorough.. and my thoughts are that I will end up having something done by both of them.. kinda like it should have been the first time, and wasn't. That is kinda what I gathered on it... but it very likely will change my surgical date - and my mind has been focused on this certain date.. I have been getting mentally prepared, and now I just don't know!

As far as my pelvic floor decent - that was what the sacral colpopexy was for.. but maybe because I have so much, they can't make it perfect..??? I really don't know. I feel like the other parts (vagina & bladder) are fine. I was reading about pelvic floor descent, and it said that anything over 3cm is abnormal, and my very first defecogram shows I have an 8 cm decent. This last one doesn't say a number, just the wording "considerable". Having this descent alone makes BM's more difficult... BUT.. then there is the colonoscopy which revealed a redundant, twisted colon and my sitz marker study - showing colonic inertia.. and 13 markers 'stuck' in the sigmoid colon... so I am guessing that maybe they might make a plan to tackle the descent, rectocele & colon. I did tell the doctor I wanted to make sure everything is corrected so I don't have to go back again for more procedures.. si I do think he is being very careful, I'm just confused... and hate not knowing!

Tracy, I'm so glad you made a new appointment!! How nice to get in on a timely manner too! I'll be looking for your update!

Smarty, I hope you are able to find a doctor that will listen and take action to help you!

Hodaya, do you feel bloated, like your full of stool? where does everything go if it doesn't come out!? Isn't white bread part of the low residue diet? I think they say to stay away from wheat.. go slow trying new things!

Janie, I'll be so curious as to what your surgeon says! I hope he has answers.
Posted 9/28/2009 10:23 PM (GMT 0)
Jenise, the barium enema and the defecogram are not the same tests. with barium enema they fill your whole colon with barium in order ot see how the whole colon looks like, if there are any anatomic probs like narrowing or kinks, if it's too twisted or loopy, if there are polyps tumors. defecogram is a dynamic x ray in which they mainly check the rectum's ability to empty in real time of having a bm and can see what's in there that obstracting the outlet. both of these tests are important in our case of constipation. i can imagine you're very stressed, esp since your surgery date is approching, but i think it's all for the best and even if it prolongs things, you should trust your drs and work with them till you manage to agree on what's the best thing for you. i think it's great they're checking everything now rather than finding out later they've made a mistake! now that would've been sad, wouldn't it? all is happening for the best and all this confusion will clear up soon and i'm sure your drs will figure out what's the right thing to do. be patient, it'll be worth it eventually. waiting to hear what the conclusions are.
Posted 9/28/2009 10:31 PM (GMT 0)
oh and to answer your question, yes, i guess wheat is not so good for us. yes the white bread is in the low residue diet, but it's for those who have watery stools, but for me, it pluggs me up bad. mostly i feel there's something getting close to the rectum, or sitting in the rectum, but it's not a definite feeling like it's there for sure. it's like it's really close, but not completely there....... does that make any sense....?? so anyway, lots of the times it can take HOURS till it finally feels like it's really there, but even then, many times the evacuation is incomplete. what i was told is that my sensation in the rectum is damaged and i don't always sense when the stools is there, something like that.
Posted 9/28/2009 11:09 PM (GMT 0)
Hodaya, yes - to ME it makes perfect sense, as this is what I currently feel. I feel like I should have a BM.. but it can't make it into the rectum.. it will take hours for me as well and then as I feel more pressure - I use a fleet and I'm able to go. I hate this whole thing! I think you have to just play around slowly with your food.. till you find what works and doesn't! Hopefully, as time goes by - you won't need to think about it and everything will just work!
Posted 9/28/2009 11:11 PM (GMT 0)
wow, you girls have been busy today.

Jenise, your doctor sounds absolutely wonderful. He is making sure you have the correct procedure and you have to admire a doctor that makes certain your tests are read and re-read. Just hang in there because it sounds like you are in great hands.

HMMM, I have the mesh too...hope this doesn't cause me any further problems. So far so good! The only thing the doctor saw was the clips in my pelvis so far.

As far as the barium enema. My friend had one and said it was horrible and she would never do it again. That is why I am so scared of it. Plus when I had the defecogram, I couldn't get the barium out. It was miserable. And what if I can't get it out? A friend of mine told me to ask for gastagrafin???? not sure how it is spelled. She said they can use this instead and it is not as constipating as barium. But I am still terrified of getting it. I don't like pain! How long does the test last? Do you have to do a complete clean out beforehand? So many questions! Sorry!
Posted 9/28/2009 11:13 PM (GMT 0)
How much barium do they put in your colon?
Posted 9/28/2009 11:27 PM (GMT 0)
Tracy,

I had to do the colon cleansing prep prior to the barium test...as usual it was awful and made me feel very sluggish and just plain bad. I had the test on a monday, but when I saw what there colon prep consisted of I started with my own on Saturday because there was no way I would be cleaned out. I don't have pelvic floor dysfunction so I had no problems expelling the barium, but I did take more laxatives that day to make sure all of it got out since they pump you full of it.

My test took about an hour and it was a very uncomfortable hour but it was necessary. I wouldn't classify the test as painful but just extremely uncomfortable.

Hope this answers some of your questions.
Jen
Posted 9/29/2009 1:04 AM (GMT 0)
Tracy I don't know the exact amount of barium they put in but it was a large bag. It completely filled the colon, major fullness feeling.
Jen
Posted 9/29/2009 3:20 AM (GMT 0)
Hi Jenise- I have had an Indiana POuch placed for my urine. But on Oct. 14 will have a total abdominal colectomy with ileo-rectal anastomosis for failed sitzmarker test and 40 yrs of constipation, and nausea. I am praying that it is the end of those 2 symptoms. I am a registered nurse and hopefully after about 2 months will be recovered enough to move to a new state (live in Virginia) and take a new job. I am trying to stay busy till Oct. 13- that is the day I take golytely all day and prepare for surgery. Looking forward to a new kind of life- not sick anymore. Thanks, shmuel -puppie's name.

Posted 9/29/2009 10:27 AM (GMT 0)
thanks Jenise! i think if the defecogram showed a significant descent, then i have no doubt something MUST be done about that, they must do something to fix that now, cause you'll have trouble going again after surgery. i've learned that in most cases they tend to try and see if the surgery overcomes the rectal probs and when they see it didn't they fix the rectum later, but i think that if it's significant, there's no point in waiting after this surgery and just do it now. Tracy, you should explain to your dr how difficult it is for you to get the barium out. maybe he has a suggestion how to help you after the test. i've heard of the gastagrafin, but i never had it myself, so i don't know, but maybe you should also ask about that. maybe it can save you some of the misery the barium causes. in my barium enema report it sais they put 700 cc barium in there. Shmuel, yes you will!! i truly believe this surgery will give you a whole new and better life.
Posted 9/29/2009 10:34 AM (GMT 0)
but you know what, Jenise.... i did hear of cases when drs did the colectomy and fixed the rectocele at the same time, but on the other hand i just remembered asking my surgeon about this when this subject was raised before Janie's surgery and he said he personally doesn't like doing the colectomy and fixing a rectocele both at the same time and if there's still a prob, he'd rather take care of it later, like a yr after, so don't worry, the rectum can always be fixed later if there's need to.
Posted 9/29/2009 11:25 AM (GMT 0)
Thanks Hodaya for all the info.

Tracy, at first I was kinda numb - like "what's going on".. but now that I have had time to think, I'm so happy that this surgery just isn't going to jump in and do the wrong thing! I forget - just when did you have your sacral colpopexy.. and did other symptoms happen following surgery? Basically.. I still have all the same issues, straining, flat stools, etc.. but now I have a feeling where it is stuck - higher up in the colon, and not in the rectum. Also, before surgery - I was always constipated with hard stools, and would go forever without a BM and always had to use a laxative, now I take MiraLax,my stools are soft, but still stuck, and I still have to use my fleet almost (95%) to get it out of the colon and into the rectum. As far as the defecograms, the 2 I had (1st and last) they only looked at the rectum, but the one I had a couple months ago, made me do a bowel prep and they looked at the rectum and part of the sigmoid. Anyway, I think between the 2 doctors, they will know what to do! Ask your surgeon about the mesh.. I'm curious. Maybe it is just this surgeon who doesn't like to mess around with it.
Posted 9/29/2009 3:03 PM (GMT 0)
Oh Jenise, so far no doctor has mentioned my mesh...but we have never discussed surgery at any length because I was not considering it at the time.

And yes, the sacralcolopopexy has made my outlet problem worse. I have very thin stools also.

When I push down it seems like my rectum on the inside collapses down and strangles anything that is trying to get out. I also have a hard time getting the stool to the rectum.

With miralax, I have soft stool, but it won't come down to the rectum or it won't come out when it gets there. I can take tons of laxatives and "blast" it out, but even then I still have to use rectal stimulation with suppositories and disimpaction techniques 100% of the time!

When I give myself diarrhea with 15 doses of miralax, some of it will come out while I am pushing, but it kind-of like sprays out....like my rectum is the size of a coffee straw. It is like the harder I push, the narrower my rectum becomes until it literally seals itself shut and I have to pry it open to get the poop out. SORRY SO DISGUSTING!!! But, I can't tell anybody else these things. LOL

I can't even use enemas because something blocks it from going up into the higher part of the rectum. It just goes in right at the opening and only the water will come back out...never any stool...and even then I can't push the water out normally and I think this is because something is bad wrong with me???? What do you think? Are you like this at all? I think I may be one of a kind!!!!!

Wow, I just explained in detail some of my issues. I need to tell this to my doctor.

Thank you all for listening and responding...this room is GOD sent! Tracy
Posted 9/29/2009 3:05 PM (GMT 0)
1 MORE THING, I HAD MY SACRALCOLOPOPEXY IN 2006.
✚ New Topic locked
1234567891011