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Colon inertia part 2

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Posted 6/27/2011 8:03 PM (GMT 0)
Yea!  The sun is actually out today and I hope it stays for the week while we are at the Cape - leaving this evening and returning Thursday evening so I can work on Friday.  I had to go take my return-to-work drug test in Portland, so an hour and a half driving (round trip) just to pee in a cup.  Hodaya, you asked before what the drug test was.  It's just a test to make sure i am not on any illegal drugs.  it's pretty standard here in the US, especially in the transportation industry. 

 

Kyle, I hope your day is going well and you can begin to enjoy life again.  I have and now have my MOM and prune juice at both houses, here and the Cape so I don't have to lug it back and forth or go buy more when I forget.  I'm almost out of Miralax so I will probably just buy some more there.  I like to watch the pharmacies to see when they have the "buy one, get one 1/2 off" sales. 

 

Ali, I'll be looking forward to hearing what your new doctor says. 

 

Mary - Just two more days, one really since the evening before is like being chained to the toilet.  I pray all goes well for you and that you are lucky and have everything perfect.  Fortunately you are going in to this knowing all the possibilities and that anything could happen after reading our stories.  I'll be thinking about you (while I'm on the beach... tongue ).

 

I will probably not have internet or the next few days unless it gets cloudy and I go to the library.  A couple of our neighbors there have wi-fi but they are all password protected and i don't have the nerve to ask if i can use it. 

 

Talk you you all in a few days! 

 

nanci

Posted 6/28/2011 5:09 AM (GMT 0)
have a GREAT time Nanci!!
Posted 6/28/2011 11:40 AM (GMT 0)
Yes, have a great time Nanci.  I hope I am able to figure out sometime type of schedule for myself with the food, miralax, and the bathroom.  Last night, I had horrible gas pains, felt like I couldn't eat that much supper, coming upwards, and then finally after 2 hours, gas, and then pot, very hard!!  I really hope overtime I can just retrain myself to know how to go after all these years of things never reaching now there everyday.  So, far, I have my appt. July 7th with the doctor to see if the nausea is getting better and prob. get my picc line out.  Then, since the nurse practioner has been busy and on vacation, I have to make another 3 hours trip for my anal manometry test and prob. start some physical therapy.  Getting a little tired of making the trip up to Springfield.  Wish my doctor was closer!

Alibee-I haven't talked to you in awhile, but I just want to let you know that I am thinking about you.  I hope everything works out, this doctor is fabulous, and you get a date set.  Also, that if you do, you have no complications whatsoever!

Mary-Good luck with prep today!  We are all thinking about you so much.  Tomorrow is such a big day for you! 

Love all gals!  lol, I am only guy on here! tongue

Posted 6/28/2011 1:03 PM (GMT 0)
Hey guys. I am making another thread but wanted to say thank you all so much for all of your help. Kyle and Nanci- I hope you continue to get better. Alibee-good luck with the surgeon and Hodaya -thanks so much for the support! I will keep my FB updated.
Posted 6/28/2011 4:00 PM (GMT 0)
Just wanted to add to everyone-Hodaya-you asked about my spiderman drawing-I just uploaded it on fb if you want to take a look at it!  Have a great day everyone!
Posted 6/28/2011 4:13 PM (GMT 0)
hey, i just saw it, Kyle, and commented. i loved it :):) you're truly talented! thanks for keeping your promise and uploading it :)
Posted 6/30/2011 4:22 PM (GMT 0)
Hi everyone,

Hodaya, glad you liked my drawing.  I have been drawing again the past few days.  I feel better in that way that I actually feel like doing that again.  I am drawing a few things because I know some people's birthday's that are coming up.  I will post those pictures on fb, too.  After I give them to my friends, there b-day is this weekend.  I don't want them to see them on fb before I give it to them. 

I talked to the doctor's office again this morning to voice some concerns.  For now, I still have an appt. with him next Thursday.  I have doing better about the nauseous and the food.  Last night, I had an awful gas pain that took forever to get out, and then felt horrible most the night.  I was able to go a little bit in the middle of the night.  I am still frustrated that I have had to use a suppistory everyday or so.  I am still not sure about the miralax.  I feel like it made me feel before, not as bad, but they claim not bloating, but I think it still makes me feel a little full and bloat. 

I feel sometimes I get pressure down there, and start maybe to produce some leakage, but then I get to the stool, and then I have like a fear to go.  Sometimes I have been successful during my attempts during the day, but then other times, it is like I get to the pot, and I have a fear of going.  It is still hard to do at times.  I just want the pressure and the extra gas out. 

I do have one question.  The nurse said this morning to take some extra fiber like raisin bran; I like that cereal, but I know it has lots of insoluble fiber.  I know fiber is always good for everyone.  However, I have been careful about some things because I know I might get some awful gas pains this early in the game.  Do you agree with this, or do you have any other suggestions?  I don't really like prune juice, but I am starting to think a small glass of that everyday might help.  What do you suggest? 

I am just trying to get any help I can b/c I really want to start feeling great by the end of the summer.  I mean, I have already feel like the heartburn and things have gotten a little better this week, which is a plus!  Maybe I am so used to feeling bad; I am a little paranoid.  Also, I still have the anal manometry test on July 18th.  I think the doctor's office think that is main problem now, not relaxing and taking time to relax at the toilet.  More investigating is still needed!  Just let me know any suggestions you have!  Thanks Hodaya! 

Mary-hope you are hanging in there, and I will keep on looking for your updates on fb! =)

Posted 6/30/2011 7:11 PM (GMT 0)
your drawing is really good, Kyle!! i think you're very good at it. can't wait to see your new drawing.

glad your nausea is better. how long has it been since you've started miralax? how much are you taking? as i've said before, my dr said i can take up to 4 doses of 17 grams a day. it does take few days to start working, how long has it been for you?

it does sound like you have some kind of an outlet disorder. i'm sure the manometry will help figure out what's going on. you must also tell your dr about the leakage situation. it's not right. why do you have a fear of going? is it painful to go?

i don't know about the nurse's suggestion... true, fiber is good for ppl with healthy systems, but as for us... it caused me lots of trouble, esp in the first few mons-year post op. it seems that now i'm doing better with it tho. i HATE prune juice too :p ewwwww but i have no choice, since it's one of the few things that helps me. i just drink it very slowly. Janie, for instance, warms it a little. she sais it's easier to swollow when it's warm. never tried it tho. maybe it's worth a try, cuz maybe it can work even better when it's warm..?

fresh sqweezed pear juice is great too. it really helps me. i have a machine at home and sqweeze about 400-500 ml of juice out of 6-7 pears. it works just like prune juice. i think, esp at this stage post op, prune and pear juice will be more suitable than fiber bars. fiber can actually block things, that's how it was for me up untill not long ago. actually, it's the past month that i've started to try fiber again and i'm doing ok (with taking prune and pear juice of course). but im 2 yrs post colectomy.

i think you should try adding prune juice and if it's possible, pear juice. you have to experiment and see what works best for you. have you tried milk of mag yet? try anything you can that may help you. i know what you mean about thinking you're used to feeling bad, i had that thought in my head for a long time too. but believe me, when you feel good, you know it!! thinking of you all always and hope things work out.

Mary, thinking of you hon! hope you're hanging in there.
Posted 7/1/2011 1:08 PM (GMT 0)
Thanks for the advice Hodaya!  Last night, I felt horrible.  I had an awful gas pain that felt stuck on my right abdomen.  I had that on Wed. night, too.  Then, all of the sudden, I felt like all my gas was stuck.  I started having excessive burping, bloating, nauseous, and felt like I was about ready to puke!  I put the trash can by me just in case.  A couple hours passed, and the feeling went down a little bit.  Then, I finally started passing some gas.  All night I slept, took a sleeping pill, just because I wanted sleep.  This morning, I did wake up passing horrible gas; ate breakfast; then I did get an urge to let some stool with ease since not going yesterday morning with some assistance.  Now, after I did that, I am burping again, bloated; like my bowel movement wasn't complete (did what I could and now everything is coming back up again); sorted feeling like I have the puking feeling again. 

I don't know why all these feelings keep on coming and going.  It is like something is stuck inside me that gets caught in me for awhlie, passes, comes again, passes; or in the past, I have gotten pressures down in the bottom.  I just sorted feel sick again!  I just don't get all these symptoms.  Nothing is making sense to me.  Why do I keep on feeling the way I feel?  I am just starting to think I wish they did the ileo on me in the second surgery because I really want to be fixed by the end of the summer, so I can start working again, live somewhat of a normal life, eat, poop normally, and not just pass gas here and there, either it will get stuck in me and comes upwards making me sick, or I can only pass it for awhile at the bottom.  It is 50/50 on me!

I know some people are tired of hearing me complain to them, and I guess that is why I complain sooo much on here b/c I just need a place to vent.  This sorted like my therapy, too!  I just really appreciate everything you guys do for me!  I know we all want to feel 100% and be healthy!  That is the goal of life!  I love ya all very much! 

Post Edited (hurtboy) : 7/1/2011 8:36:13 AM (GMT-6)

Posted 7/1/2011 1:18 PM (GMT 0)
Oh yeah, about the miralax.  I have been taking it since Sat.  I still think it doesn't settle right on me (don't know why-felt the same way with my colon); and I have been taking around 2-3 doses a day.  I haven't taken the mom, and I did buy some prune juice yesterday. 
Posted 7/1/2011 4:02 PM (GMT 0)
hey there Kyle.... i was so hoping miralax would work for you like it does for the other girls here. i'm so disappointed it's not :( something is def wrong and i think you should also ask for a ct scan to reviele any narrowings along the small intestine (not the anastomosis). it also sounds like your outlet is obstructed too. i hope at least prune juice gives you some relief.

tell your surgeon everything you're telling us on here and ask for a ct scan (forgot the name of the specific ct you need, but Rosemary knows, ask her on a new topic) in addition to the manometry.

i can tell you that living with an ileo is so not the end of the world, it actually gave me my life back and it doesn't prevent me of doing anything i like to do. i feel so much better with it and am more free - free from the b/r. just know that even if everything you try doesn't work, there's always a way out, and this way is really not so bad at all.

and feel free to vent here as much as you need. you have every right to! love you too hon!!!! always!!!!!
Posted 7/1/2011 6:42 PM (GMT 0)
Thanks for always listening Hodaya!  I just called the doctor's office again!  They are prob. tired of hearing from me.  I was trying to tell the nurse everything I have been experiencing, and I told her about my incident last night, and how I haven't been feeling too good today.  I have been eating today, but just little bits here and there, and easy foods to digest.  While ago, I was able to let out some small stool again, just a little formness.  Well, I was like, I am going to use enema; there is just more in there; I feel awful!  I did, and I was able to get a lot more out, I got it somewhat liquidy to expel, but there was still some formness; still have some burpiness going on now.  It is just sooo frustrating!!!!!!!  mad    Almost think I need a mag citrate bottom to just make sure to get all the gas and stool out.  Orginally, my appt. was scheduled for Thurs., but I got it bumped up to Wed. at 10am.  Like I said, I just can't stand this anymore.  The nurse told me to use a suppistory every morning to try and retrain my bowels.  I am tired to living and being tied up to the bathroom; trying to go here and there; feeling constipated; feeling full of gas; the burpiness; the nausea; the bloating; it is never ending!!!!!!!!!  There has to be a way to get me better; I want old Kyle back; the happy go lucky person, and live life to the fullest! 
Posted 7/2/2011 3:06 AM (GMT 0)
Nanci and Kyle-How is everything?
Ali-Any word from the surgeon?
Posted 7/2/2011 2:16 PM (GMT 0)
Back at work now - Day 2...I have the burping problem that seems to happen almost every time I stand up.  At least I know that's when it will likely happen.  Sometimes I am caught off guard and it sounds like I've been drinking (I wish).  I guess it's because I am not passing gas (which is probably best at work since the few times I did it home it was pretty smelly), I am burping it instead. 

The days are long since I am here from 630am - 5pm or 7am-530pm and the next two days I have to come in early to open the station at 5am.  I am not looking forward to that but I hope to get out early instead of making the extra overtime money. 

I brought a big bowl of jello to keep here for when I am hungry in addition to some cooked spinach and yogurt (not together).  I would like some carbs but don't want to get too gassy and be burping even more. 

The weather is great and work is very busy (I'm on break) with the 4th of July celebrations here in Portland and also in Boston.  Since the trains run between the two cities they are all busy in both directions.  many of the trains are sold out. 

Everyone have a great weekend and enjoy some fireworks! 

 

Posted 7/2/2011 2:18 PM (GMT 0)
Mary, I got your text and thought it was crazy that your colon was so long too.  My doctor said he didn't know if the added length was part of the cause or if it was the result of the problems. 

I hope you are doing well and have a quick and easy recovery.  I'm sure your girls are happy to have you back at home.  You are home, right?  Not sure if I'm up to date on everything and everyone. 

nanci

Posted 7/2/2011 2:48 PM (GMT 0)
Mary, glad to hear you are recovery well, and I hope things to get better each day.  I don't know if you have read some of my earlier posts, but I am still struggling a lot.  Now, I am just getting to the point of doing enemas now.  Then, as the day progresses, the more food I put in me, I just feel like I get sicker and sicker, nausea.  Nanci, I am glad you can relate to the burpiness!  However, I am trying to eat b/c I don't want to continue on getting weaker; however, then that leads to a harder time going to the bathroom, too.  Pain with being stuck in me for awhile, cramping (gas pains and bloating feeling for awhile), before I finally start passing gas downwards instead of upwards.  I have been sick a lot of nights still this week!  It is funny b/c I guess I get urges sometimes, but I am not sure.  I guess when I really start to pass gas, then I know I should be going to the bathroom, but just passing gas and stool is still really hard to do sometime.  For now, another appt. with the doctor on Wed., and I really want a whole bunch of tests done and quickly to figure out what is wrong.  I keep saying I don't want an ileostomy (another surgery), but I want to be better to and have somewhat of a life back.  I am just getting very frustrated easily now b/c I am suffered for soo long.  I didn't expect to be instantly better after surgery, but I thought I would progressing each day a little bit better.  Not switch over to wanting to daily enemas now to release gas and stool! 

Also, happy b-day Nanci!  I hope you have the best day you can at work, and I want to wish everyone a happy 4th of July!  

Posted 7/2/2011 10:16 PM (GMT 0)
Hi y'all!

Kyle - wow - I really wish you were doing better. What do you eat on an average day? I wonder if there are some things that really aren't agreeing with your remodeled digestive system. I LOVE the chocolate chip cookies on the train so they brought me some for my b-day today. I ate only one and was suffering from the most extreme heartburn and the usual burping. I have always eaten these cookie with no problem but just one cookie did me in this afternoon. What if you go back to liquid (jello, popsicles, etc for a day or two and see what happens. Kind of like starting from scratch. Have you tried the ranitidine that you were taking before the surgery for heartburn? It might work for that and the gas too.

I think we are sharing the dysfunctional rectum issues too. I feel like when I try to go I am trying so hard to get liquid out. I feel as though I am using (while pressing on my lower abdomen) my core muscles so much and don't really feel like my rectum is doing any work. It's sort of like pushing everything up against a closed door and until there is a great enough force it won't open. I'm really not sure how to fix this or what they do for it in PT but my doctor said we'd discuss it in August at my next appointment.

Cooked, canned spinach for dinner... yummy - glad like it.
Posted 7/3/2011 7:52 AM (GMT 0)
Kyle, i am so sorry to hear how hard you're struggling :( wish you could move forward with the tests already and have some answers. this is def no way to live. doing enemas and suppositories every day.. i mean if it worked, maybe it was worth it.. maybe, but they don't even work. you need to have the tests to find out what exactly is wrong and go from there. they will probably send you to do biofeedback for the pelvic muscles. did you ask your dr about doing a ct scan? i think the name of it is enterography? or something like that. thinking of you lots.

Nanci, good luck with getting back to work!! i hope you do ok and everything goes well. how's it going with prune juice and miralax and mom? as long as those help you, that's great! maybe biofeedback can make things even better. it's actually a butt PT, the PT will connect your butt to electrodes and will ask to squeez open etc. boring... and unpleasant least to say. but maybe it will be worth it.

Mary, so so happy surgery went well and you're recovering so well :):) it's so good to hear a success story! hope everything goes upwards from now on for you!!!! all my best to you hon!!!!

Ali, hope all is well and progressing for you.

thinking of you all!
Posted 7/3/2011 6:42 PM (GMT 0)
Hi everyone,

Yes, Hodaya, it just becoming sooo frustrating.  In the middle of the night, again, last night, I felt horrible, sick, nausea, and felt like I was going to puke.  My bottom was hurting, tummy was cramping, and pressure was trying to push downwards, but nothing; was actually letting out gas at the time!  I do not even think suppositories are cutting it out anymore.  It has to be an enema!  Like this morning, I did actually feel an urge to go when I got up (thought I might produce some leakage, but that is it) but I just couldn't do it!  Gave myself an enema, and did go a couple more times to finish letting some out, after effects from the enema I know.  I am starting to feel like I at least need to do a couple enemas or so a day (depending on what I eat) now to survive just so I don't get sooo sick.  I feel like I def. need to put my foot down at my doctor's appt. this Wed. to get moving on these tests!  So tired of feeling bloated and nausea!  It is like I still have symptoms of CI.  It is awful!  I told one of my friends today, which is awful to say, almost becoming afraid to eat and drink again just because I don't want to feel sooo bad.  As you see, I asked Rosemary some questions, and I am almost to the point where I am about ready to flat out ask for a temp. ileostomy.  I don't really want to go through another surgery, and a couple people have asked me; you don't want that; well, that don't know how I feel; makes me sooo mad!  I really want to get better by the end of the summer, so I can start working again, at least part time (I need money!), and have somewhat of a life back!  I feel like each surgery I have had this year has made me worse and worse; instead of better!  Do you know if anybody really has the much luck from biofeedback?  I mean, I still sometimes have a problem of passing my gas at times.

Nanci, as far as the food; I try to watch on what I eat , so I don't feel the burpiness and bloating so much until I can pass that god awful gas inside my digestive system.  I just thought with each progressing day, I would continue to get a little bit better and better!  The heartburn I have kept down pretty well; I have been taking prevacid at night time before bed, and that has been helping my situation.  However, I still get it from time to time; and I know it is not good to take, but then take a couple tums, but the prevacid has been helping with the heartburn.  Did fix some jello yesterday, and bought some more yogurt, bought a sprite as well to take sips here and there (helps!); fixed my pie, too.  Fixed it for my friend; today is his b-day.  Small piece of that went down okay, since it is light! 

Mary-I am sooo happy for you!  I just hope things do not go downwards for you, and that you are able to potty like a champ, and keep getting stronger and stronger each day.  We need a success story on our thread right now!  I don't want to hear of any setbacks! 

Ali-Haven't heard from again in awhile.  I hope things are going okay!  Do you know when you have another appt. with the surgeon?  Is surgery going to scheduled?  I am still keeping you in my thoughts and prayers! 

Posted 7/3/2011 7:24 PM (GMT 0)
Oh, I forgot to mention!  Hodaya, I am glad you saw my other drawings I did!  I am trying to do more of that to keep my mind off of things.  Something I can sit and do.  Everyone, I have posted everything on facebook, if you want to take a look! wink
Posted 7/3/2011 10:16 PM (GMT 0)
grrrrrrrr i wrote a whole post to you, Kyle, and poof..... it's gone mad   i just so hate it when it happens lol.

i love your drawings, you're really good at it. it's so good you have something to do to take your mind off of things. and it's something you enjoy doing :)

i really feel for you for all you're going through. i think that this is the time when you are going to have to make a decision. you are awaiting more tests. unfortunately, things are not working right at all. you're not able to go still, even tho you've had your whole colon removed, the impression is that you have an obstructive defecation, but as i understand, enemas do help you, right?  

if enemas help you, then that's ok too. there are many many ppl who live their lives like this, they do an enema every morning, it gives them the relief they need and then get on with their day. if you think it's something you can live with, then that's ok too. it's not too bad. for me enemas never worked, nor did suppositories or laxatives (that is after the colectomy too), and even if they worked, it consumed too many hours every morning, i couldn't live with this. and still only a small amount was out and i felt uncomfortable all day. so i had to resort for the ileo. but if enemas give you the relief you need and you can live with it, that's not so bad.

personally, biofeedback didn't do anything for me. i had 10 sessions and things just stayed the same. i havn't heard of anyone who had success with it on this forum, but my surgoen swears he has patients who did have success with it. so i can't tell you not to do it in any way, cuz maybe it deos help some ppl. i'd be very happy to know if it helped you.

i know how frustrated you feel, and you just want it fixed and feel good. but right now you'll have to go through the process of tests and consultations with your surgeon, figuring out what exactly is wrong and try to fix it. as i said, if you're able to manage with laxatives, enemas, then stick with it. if not, then you'll need to consider the posibility of an ileo. but what ever you decide, it's your decision, and you should decide on what works for you best.

Posted 7/4/2011 12:59 AM (GMT 0)
I am gettting tired so can't catch up but I feel so bad that you are still miserable. Were things normal at first, what was happening in the hospital? I don't know about biofeedback. My surgeon said good things but I have no experience. You deserve to feel better!!
Posted 7/4/2011 2:04 PM (GMT 0)
Hi everyone,
Kyle and Nanci, I hope you're both feeling alright! I went to biofeedback and it did help me to see that I wasn't pushing out with the correct muscles. I hope if either of you decides to do it, it's helpful for you!

Mary, I am so glad to see how well you are doing. I have been sending good thoughts your way!

As for me, I haven't heard back from the new surgeon's office. She was supposed to review my records last monday to determine if they can assist me, and then they would call the referring doctor's assistant to get all of my information and insurance info, and then call me to schedule. As of last Thursday I hadn't heard anything so I emailed the assistant, and she said she'd call to check on it. So I'm waiting until the holiday weekend is over, and then tuesday or wednesday I'll email her back to see if she was able to find out anything.

I am "on vacation" visiting family in DC, and should be having a blast...but I've been taking dulcolax every day since Friday, and it is hardly working and gives me stomach aches at the most inconvenient times. Not to mention there is food EVERYWHERE and i look like such a snot when I don't eat what everyone else is eating. Little do they know, I love food and would be stuffing my face if I could!!!

I am laying here with a heating pad trying to get some kind of movement from the mega dose of dulcolax I took last night, so I can at least enjoy the day. Cross your fingers for me!

I hope you all have a wonderful 4th of July!
Posted 7/4/2011 4:21 PM (GMT 0)
Happy 4th Everyone!

Great to hear from you Ali!  Hopefully, you will get some news in the next couple days on when you can get that appt.

Hodaya, well, even with enemas, I still don't think I can survive.  Yesterday, since I was sooo sick Sat. night; I tried really hard to watch my diet yesterday; mainly yogurt, liquid foods, and I didn't feel as nausea and no major burpiness last night.  However, I had this horrible pressure in my lower abdomen like I was trying to push out gas, but I couldn't.  It was a closed, brick door!  My bottom was in a spasm; it hurt; I don't know if that was a sign I needed to go to the bathroom, but I didn't have an urge.  This morning, I was making coffee, and I tried to run to the bathroom a couple times b/c I was walking around and felt like I was going to let stool out then straining to get it out while standing up.  Got to the bathroom, sat down, and I couldn't do it.  Finally, the third time, stood up (feels like when I sit down I can't do it, or I have to spread my buttcheeks wide up to do it; this morning I stood up for awhile then sat down on the pot) I was able to get some stool out; didn't think I didn't too bad this morning.  I should have finished it up with an enema then before I even ate anything.  However, I thought maybe if I try to go ahead and eat breakfast, I can force some more out.  Well, I decided to go ahead and eat a bowel of cereal this morning.  I felt sick afterwards!  Then, I did my enema, got some more stool, and this morning my belly has just been rumbling like it still has some liquid (from the enema) in there.  Finally, I am laying here, trying to force out this god awful gas inside me.  I was burping for a good hour or so before I tried to force this gas out downwards.  So, yes, maybe I can get stool out at times, but I have to try real hard, and the only time I think I might get an urge is in the morning, when I know I prob. could be going more during the day.  Suppositories do not help as well; and I think I need to do the enemas before I eat anything to make sure I start my day fresh to get all that gas and stool out of me before I put more food in me for the day; which might take awhile! 

So, in reality, I think I am complaining about the same thing, as I did before, gas does not move free flowing outwards b/c as the day progresses, the more food I put in, the more bloated I feel, full of gas, night time comes, and I get sick.  An enema is not going to cut it for me the day!  I can't handle the laxatives anymore!  Like I said, the semi-liquid diet did help yesterday.  I try to follow the special diet, and this morning I had frosted flakes and a cup of coffee (maybe it was the extra sugar), but I just get sick.  Something is still preventing me from having all these bowel movements I could be having during the day time.  Even drinking apple juice or something I feel doesn't help!  I mean even the doctor thought by now, I could tolerate somewhat of a normal meal, and then poop; but no, I still feel like I have to wait till I am absolutely going to explode or something. 

Rosemary has been very helpful, and I ready to go in with a load of questions on Wed.  Why am I only going once a day, and it still even is a struggle to get it out then?  Why can't I pass my gas efficiently because it makes me sick?  I need to be able to eat a little bit more and poop more normally to regain strength.  You are right, it is coming down the decision of the bag, since I complain so much.  It is just funny, even like Rosemary said, boat for example, had all the tests done (everything!) before his surgery, and now he complains of having trouble going to bathroom as well.  Wonder how he is doing!  Makes me wonder if all testing is really accurate sometimes.  I just feel like every procedure I have had this year keeps on making me feel bad; when I am trying to get better. 

Posted 7/4/2011 6:18 PM (GMT 0)
Kyle, it's obvious you have a severe outlet disorder. try biofeedback, but if it doesn't help, then there's no other solution but having an ileo. of course there's botox injenctions, but i don't really think much of those. i could be wrong, but that's my opinion. if the outlet disorder is the only cause for all your simptoms, then with the ileo you should do fine. at least much much better. me, for instance, i also have a severe outlet disorder, but i also have a very slow small intestine. but even tho my small intestine is slow, i still manage much better with the ileo.

BTW, cereal used to block me after my colectomy, any type of cereal didn't do me good, maybe you should try not eating those for a while, see if it helps a bit. not eating cereal is not something that's gonna fix things, but maybe it makes your simptoms worse. that's how it was for me.

the way you describe it, i also don't think you can live the way you do now. enemas and suppositories are not really working for you and you shouldn't struggle like this every day. i remember myself struggling like this for HOURS every morning after my colectomy and still feeling bad all day. it's no life. you can do much better than this with an ileo. if you go the ileostomy route, ask your surgoen of having an end ileo. but actually a loop ileo is really ok too and less risks. the only issue with my ileo is that i still have my rectum and can't expel the mucous that builds up in there. so also ask your surgeon what if you can't expel the mucous, if there's a posibility he can help you with that - sucking it out every once in a while for you.

last i heard from boat is that he's doing biofeedback now and still doesn't see improvement. but i think that was after he's 4th session, so maybe things still have chance to improve. when's your appt to the surgeon?

Ali, i hope you hear from them soon. crossing my fingers real hard the dulcolox works and you're able to enjoy your vacation. hang in there hon!!
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