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Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/17/2011 1:07 PM (GMT -6)   
Hi Everyone. I've been posting on my other thread about UNC testing but the post was so long and I just have a couple of shorter questions I'd love to get some advice on, so I thought I'd put those in a separate post:

I want to say thanks again to everyone for the great advice. Reading all of the pages on here has been a vital source of my information. It's great to get personal stories from people. I will try to get more information collected for my mom. She asked me if it would be ok if she asked her own questions when she comes with me to UNC again in April, which I am glad about because I feel like that at least means she's thinking about things and I know she is trying to understand. I'm going to let her ask the doctor whatever she wants but I am really hoping the doctor will explain to her that slow transit is more than just being constipated. The doctor told me that the way they do their sitzmark test, anything up to 66 hours is a "normal transit time", obviously 66 hours would be on the higher end of what is considered normal. She said according to my test results and the location of the markers, my transit time was 116 hours, extremely slow. To me, that is a BIG difference. Even if I was going to the bathroom every other day, the stuff moving out of me would be stuff from several days before...which means I'm always uncomfortable, full, bloated, etc. I think a big part of why it's harder for her to understand is because I'm not in serious pain. But just because I'm not screaming in pain every day doesn't mean I don't feel terrible.

Anyways, I was wondering a couple of things:

If any of you have had biofeedback, did they do more manometry tests or anything afterwards, or did they just go by the biofeedback therapists reports?

Also, after these tests, and beginning biofeedback, I feel I am getting close to the "surgery" territory but I am not sure. I know it has taken me so many years just to finally get to a doctor who would do these tests and take my "constipation" seriously, in your experiences, once you begin having tests like these, does the process move any faster from there? The waiting is the worst. Days feel like months. I am sure it depends on the doctor you see, I go to UNC, a large teaching hospital.

lastly, bloating is one of my worse and most uncomfortable symptoms which I deal with 24-7. I look 8 months pregnant (in my lower abdominal area) after a very small meal. I was elated the morning I woke up to go have a colonoscopy, after 2 days of prep my stomach was so flat and I felt so comfortable. I was wondering, for any of you with CI, did you have terrible bloating as well? And did surgery improve the bloating symptoms?

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/17/2011 1:42 PM (GMT -6)   
Alibee,

after my biofeeback they did want to re-evaluate everything. but they didn't do manometry, they did a pelvic US instead, that can also give the info they needed and maybe even more than the manometry.. (?) - not sure exactly why they chose the US.

did your drs mention at some point surgery is an option? do they mention it still? i think 116 hrs + your story is enough for you and them to make a decision - surgery. just too obvious to me.

yes i also had severe bloating all the time, couldn't eat, cuz laxatives didn't work efficiently, so i was always so full (like you said, even when something does come out - it's just old crap :/ cuz it was always so little coming out). so one little meal a day was enough for me. the rest of the day i just kept drinking lots and lots of water, 1 cup of black coffee at noon and lots of sugar free candies, but no more food for the rest of the day. i was too bloated to eat.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/17/2011 6:19 PM (GMT -6)   
Hodaya,

My current GI doctor has mentioned surgery. When I met with her and she explained that what I likely had (this was before the sitzmark test) was a colon that was in her words, "slow as hell". She mostly talked about testing but didn't really get into how to treat it - so I asked, If it was CI, what are my long-term options? And she said if it was CI, and after everything else was checked, and I was still feeling badly, we would have a "meeting of the minds" and figure out if surgery was something to consider. Then my mom almost fell out of her chair and started saying things like, "well if it was the inertia thing...we wouldn't HAVE to do surgery right?" and then we kind of stopped talking about it. I think the mention of surgery caught her very off guard, so I am hoping at my next appointment the discussion will be a bit easier.

Also, when I got the results of all the tests over the phone, I think my doctor could tell I was concerned about what to do, and that I was disappointed about having to go to biofeedback...she said something like, even if I walked into her office tomorrow and said 'OK that's it just give me surgery and take the thing out!'...we'd still have to make sure everything else was OK first, ie. check out the transit time of the stomach and small intestine. But she said they didn't want to do that right away, but they wanted me to wait 2 months to schedule my next appointment so I could get in a few biofeedback sessions, and because they didn't want to expose me to too much radiation all at once so I needed to take a little break I guess. Maybe it is giving my wallet a break too because holy cow those first few tests were expensive!

She does know that I am graduating college the first week of May and that I am desperate to get this figured out, so I am hoping at my next appointment we can really get going in whatever direction I need to go next.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/18/2011 4:26 AM (GMT -6)   
sounds like your drs do seriously concider surgery. when there's even the slightest pelvic isseu, they just have you do some biofeedback before surgery, but to me it sounds like surgery is their plan, esp if you want it too. i hope your mom comes around and accepts it soon. has she read some of the total colectomy threads yet?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 3/18/2011 6:23 AM (GMT -6)   
Hi Alibee,
 
I just wanted to introduce myself.  I started a post on colon iertia as well.  I have been going through a lot, too.  I hope everything works out for you, and you sound very young like me.  Just want to get better, so you can lead a normal life. 
 
I am still not sure what is in store for me, but in the future more tests and possible colon removal might occur.  I have already had part of my colon removed.  I had a kink in the splenic flexure, and the surgeon was trying to save as much as possible thinking this would help.  However, I am still suffereing today.  I have bad days all the time.  I feel bloated all the time, like you described.  Even though I feel bad at work; I try to power through on eating sometimes.  I usually graze, like crackers, like Hoodya explained, eat little candies, suck on hard candies, maybe soup here and there, yogurt; anything to make me not feel too bad! 
 
I have an appt. on Monday with my GI doc b/c I guess where anastomsis has occured has narrowed, which I do complain about my left side a lot bloating with soooo much pressure, hurting, and going to explode!  He thought maybe if the GI doc did a colonoscopy with dilatation would help, but I guess we will wait and see.  I reviewed my transit study last night, and I am not sure.  My colon moves pretty slow, but hoodya is giving you some great advice.  Believe like you, I just want to live a normal life, and do keep up posted on your situation as I will I about whether more surgery will come in the future for me!

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/24/2011 12:19 PM (GMT -6)   
Thanks for the advice everyone, I am doing my best to deal with the "wait" right now. The biofeedback sessions are confusing and uncomfortable, and I feel like my pelvic floor area is more irritated since beginning them!

I have been wondering, if anyone here has had a defecography test - what is that like? For me, if I am going to have a bowel movement without laxatives (those rare times) I have to sit and relax with a heating pad on my stomach and relax and do something like work on my computer or something for a while, and then I will gradually feel an urge to go and when it's strong enough I sort of hurry to the bathroom and with a little pushing everything mostly comes out. But if I just sort of have an urge I can go sit on the toilet and push until the cows come home but nothing happens. I have to really have an urge, and then I can almost just sit down and relax and it will come out. The only frustrating thing is lately I have noticed that sometimes the very last bit of my bowel movement is very soft and a tiny bit stays up in the rectum. But not an amount that I can feel or that makes me uncomfortable - almost like if you squeeze all of the toothpaste out of a tube of toothpaste, there is still toothpaste IN the tube but it's just "residual". Is that normal with bowel movements that are very soft or not well formed?

Back to the test - I was wondering how much barium they actually put in you, and how far up it goes? Do you feel an "urge" to go? I had a manometry and was told I had excellent nerve sensation, but I know having a bowel movement in a clinical setting is much different than having one at home. I am worried if I had this test and didn't get any urge to go I wouldn't be able to get all of the barium out. Do you have to get it ALL out to "pass" the test? I don't even know if or when I'll have this test but I'm sure it would be in the cards eventually. I also wonder sometimes if I have some kind of prolapse or intestines pushing down into places they should not be. With my sitzmark test I had all the markers left and they were all spread out for the most part, not clumped down in the pelvic area, so I know I have slow transit but I'm not sure what is going on outlet-wise. I have been hoping to eventually look into surgery for my extremely slow transit but I know things like a bad defecography can limit ones options. If someone could shed some light on these issues or this test I would really appreciate it. I feel I have so many questions and some of them I don't even know how to ask, or what to ask. It is nearly impossible to talk to my family because much of this is beyond anything they are familliar with. I get so much advice on my diet and people say things like, "Can't you just...." or "What if you try...." It is frustrating, but being able to come here and ask you guys helps a lot.

hurtboy, thanks for introducing yourself! I agree, the bloating is the worst. I also graze in the evening. I'm just so tired of thinking about this all the time. My next appointment is not until April 19th...and every day that I have to wait feels like an eternity.

Post Edited (Alibee) : 3/24/2011 11:45:52 AM (GMT-6)


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/25/2011 7:44 AM (GMT -6)   
oh yeah... i felt the same way about the biofeedback, like it was only making things more difficult.

i had the defecography numerous times. it's a dynamic x ray (like on video) that tapes your whole defecation process. they will ask you to do an enema before the test. you will be given barium to drink i think about 30 mins before the test, then when you go in, they fill your rectum and vagina with thicker barium. then you will be asked to sit on a toilet like sit (dont worry, you'll have a big robe on you the whole time), on your side there will be the x ray machine and you will be told to first squize, then to expel the barium. in this x ray they can see the anatomy of your rectum, wheather it's normal or not, if there's a rectal prolapse, Intussusception, rectocele, enterocele, anismus. you have to be able to expel ALL of it. not being able to expel all of it means there's a functional/anatomic problem.

i can SO relate to what you're saying about needing to relax and needing to feel the urge strong enough. that's how it was for me too, and if i missed the moment, it's lost. and it's SO funny you should mention the tooth paste thing.... cuz i always compared the way i feel to that too!!!!! it's amazing how we think alike! to your question, in a normal rectum, you should be able to expel ALL the stools, whether it's formed, soft, liquidy or watery.

i don't remember how much barium they put in. it's obvious your colon is way too slow, and yes, you don't know how your pelvic is (yet), that's why you're having the defecography. don't worry about the stress and all - the barium will show exactly what's going on in your rectum anyway - anatomically and functionally.

whether you pass the test or not, YOU ARE the one that should make your dicisions. i think you should first of all have the test and see what the results and then think foreward. in any case, if you decide on having your colon taken out, you should always be aware of the possibility of a bag. before my colectomy i knew i may end up with the bag. i was willing to accept that, cuz either way, there was no way i could go on living with that colon in me. but let me tell you this, even if you have pelvic issues, they WILL try the anastomosis anyway (to connect your small bowel to the rectum) - they will still give that a chance first.

oh yeah, and i know all about those who have tons of advice. maybe their intentions are good, but they have no idea what they're talking about.

i know it's hard to be patient when you're in so much pain. hope you're hanging in there. it'll all work out for you soon i'm sure.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 3/31/2011 11:34 AM (GMT -6)   
Hi everyone, I have about 2 weeks to go until my next appointment with my motility doctor at UNC...and I have another question or two. Just a quick recap,
So far I have had:
-Abdominal x-rays
-colonoscopy
-Hydrogen Breath Test
-Sitzmark study
-Anorectal Manometry/emg/balloon expusion etc.
-several biofeedback sessions

Last I spoke with the doctor she said she wanted me to go to 3-4 biofeedback sessions before coming back to see her in 2 months. She said there were more tests to do but they didn't want to expose me to too much radiation at once, and she also wanted me to see the biofeedback therapist a couple of times because my coordination was slightly off and my pelvic floor was tense. I've been to biofeedback for 5 sessions so far, and I have another session before I go back to UNC. The therapist says I am doing well and have good coordination and just need to keep working on relaxing. I have been doing my best to also follow her eating advice and special stretches etc...and drinking more water and walking often, but the lack of bowel movements is still the same. I'm sort of frustrated because how am I even supposed to know if biofeedback is doing anything, if my colon is so slow that nothing moves down there anyway?!

So my questions are:
For those of you who have been through all of this (testing and everything), once you really got into the testing did it take a long time to go from diagnosis to deciding what your options were to actually DO something about it (surgery)? I feel I've been doing everything I have been told to do and I don't want to go back to the GI and have her say, well, try this or that...I want this thing out of me. I feel so toxic. When I spoke with her last and she told me to do some biofeedback, she said there were more tests they would do if my stomach issues continue, like checking the transit of my stomach/small bowel, but she didn't mention what else. I am hoping to explore the option of having surgery eventually, and sooner rather than later. I feel, and I hope I am right, that they would not have me going through all of this therapy and all of these tests if there was not a bigger plan in the future. Do you think I am right about that?

Also, I am sure because of some mild pelvic issues I would also have to have a defecography or something like that. If I didn't get ideal results from that I know it might affect my chances of having surgery with an ileorectal anastomosis...but surely they would still do SOMETHING for me right? I guess I am so afraid that I am going to go through all of this and they will say, sorry we can't do anything. Did your doctors give you different options for surgery? Hoodaya - did your doctors say they would try the anastomosis and if it didn't work they would just do an ileo or how did all of that work? I have been doing a lot of research on ostomies since finding out I had some pelvic issues, even though they said it was mild. So if nothing else could be done I would be open to considering it. I feel much more at peace with the idea but with my parents, that is a totally different issue. My Mom is afraid of surgery in general and I have been hoping to get her to come around to the idea of a subtotal colectomy if it becomes an option. But the word "bag" would absolutely make her faint.

I am graduating in less than 5 weeks and it is so hard to even think about my future when I have no idea what is going to happen with my bowels. I just want to get it figured out and fixed as soon as possible so I can have my life back, and I am really praying it does not have to take forever to do that. It has been so many years already and I am just exhausted.

Lastly, my biofeedback therapist had spent a good portion of our sessions giving me diet advice and telling me to try things like metamucil or benefiber. My family also gives the diet advice, and I know at my appointment with the motility doctor my mom is wanting to ask the doctor about that. (She wants to know if maybe I ate MORE, or at different times, or things like that...if that would somehow jumpstart or get my bowels moving) I know that it won't make any difference at all because I've been dealing with this for so long...if it was as simple as eating more apples, or eating more often during the day...believe me I would not be having this problem right now. Even my colonoscopy prep took 2 whole days, and I had to drink multiple preps, and there was STILL residue in my ascending colon. So I know the issue is deeper than just the way I am eating or my "stress" levels. I feel my GI doctor understands this because she is the one person who has not given me ANY diet advice whatsoever, and she even said, "let me guess, more fiber makes you feel worse?"...she told me to keep taking miralax and dulcolax until I saw her again to try to keep things moving as much as I could. So I guess my question is, in your experience, the GI/Motility doctors who deal with these things, do they have an understanding that if someone has colonic inertia, conservative changes like dietary things, really don't do anything? I am open to my mom asking her questions but I hope the doctor will help me out by explaining to her that slow transit is different from regular constipation. I think if my mom can just understand that, then it will be like a lightbulb going off and maybe my parents will begin to understand this is a bigger issue than just constipation and I need to get it fixed.

Thanks for reading this, I have been having these internal conversations with myself lately, rehearsing what I will say to my doctor and to my mom when I see them next...I can't seem to stop! I am just so desperate for them to really understand how much this has affected my life. I feel like a crazy person this week so I just had to come on here and get some of my questions out.

I hope you are all feeling well,
God bless

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/31/2011 3:14 PM (GMT -6)   
i was just like you before my colectomy.. always rehearsing what i will say to the dr etc, how to make them understand. since you asked how it worked and how long it took my drs to make the final step, i'll tell you what happened with me, the whole process.

i started my treatment with a team of drs at a big hosp on Jan 2008. they tried different laxatives which didn't work at all, even with large amounts, even the colono prep didn't work on me. so on May 2008 the gastro said "i guess we should go for surgery". BUT i asked another dr about my pelvic and he said it's crucial i have a seriese of biofeedback sessions before the colectomy. so i told the gastro i'd like to do biofeedback first.

after i finished with biofeedback (sept 2008), i made an appt with my gastro to give him the report and to go a head with surgery. they kept postponding my appts and it took me untill Dec till i was able to see him. when i saw him he was very rude and disrespectful to a humiliating degree. i couldn't understand what caused him to suddenly treat me like that. it was SO EVER devastating.....!!!!! anyway, i didn't say anything about it. he reffered me to a pelvic u.s (it can give sort of the same info as defecogram) and another transit study. both of them came back bad. i couldn't expel the gel on the u.s test and my transit study went on till day 11 (i still had all the markers in me on day 10 and they havn't reached the sigmoid yet).

so on the end of Jan 2009 i came back to him with the results. he said all the drs will have a meeting and discuss my case. he said it'll be in 3 weeks (something like that) and after the meeting he will call me back with their decision. it was obvious to me that i needed surgery and i told him that's what i want.

well he didn't call me back after 3 weeks, so i started calling him and kept getting the "we didn't have the chance to have the meeting yet", and that's how it kept on for few mons. i was getting worried, desperate and practically a nervous wrek. started to think that they may have changed their minds and don't want to help me. it's a long story. they really tortured me for a loooong time till i got to the point i had to go there and beg for surgery. i was almost having a nervous brakedown. i just went there and begged while falling appart will tears and despair. up untill today i'm still not sure what their deal was, i mean they already agreed on surgery on May 2008, then why all of the sudden they are acting funny and not sure about surgery..? with my last trasit test they did say surgery is required, but we are not sure we can sent you to surgery. it was all too confusing. they kept playing with me till July 2009. on the end of July they finally agreed. i went to see the surgeon in his private clinic, cuz i could get in there sooner and we scheduled the surgery in 2 weeks! (Aug 2009)

when the surgery didn't work and i came back to my surgeon telling him things are bad, he didn't really want to listen. and even after i had an obstruction and was hospitalized in his ward, he didn't even talk to me about it, nothing. like he didn't want anything to do with me. so i just went there and told him "do me the bag"! that surprised him. i just think he didn't think i was seriously in pain. like he doesn't believe me. so when he saw i meant bussiness, he finally sent me to check the anastomosis site for narrowing. the test came back normal, but i still wanted the bag, cuz on a daily basis it was hell. (it's the combination of a slow small intestine and severe anismus). as you know, i'm gald i had the ileostomy (11 mons post colectomy).

but my case was unique (the way the drs treated me). most of the girls here didn't get it that bad from their drs. i don't know why they abused me like this.

i think your drs are putting you through all the right steps before sending you to surgery and biofeedback is part of the process. diatery advice - ppl all around me had a lot of it to offer me.... they have no idea. stay away from fiber Alibee. your mom will have to come around. let her read some of the total colectomy threads. i know that many ppl had their family understand by giving them info on their disease. you should also do that. if she cares enough, she will cooporate and make the effort to read in order to understand you condition better.

there are no other options for CI other than a colectomy. my drs didn't say anything, they never did explain much, it was me who told them (when i begged - and i had to beg for a long time - few mons) "even if it doesn't work and i need the bag, i don't care anymore, i must have the surgery". that's what i kept telling them for mons.

hope everything works for you soon and your dr will explain it to you mom that you have to have surgery.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy
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