New and needing some advice, appointment at UNC tomorrow

Hi everyone,
I'm sorry this is so long, but I'm hoping someone might have some advice or words of wisdom for me.
I'm a 24 year old, who has been having bathroom issues for as long as I can remember. Constipated since I was very young, and on and off growing up. Then came high school, I began to notice my bowel habits getting worse, only feeling like I needed to go if I was sick or took milk of magnesia. My stomach also began its bloating phase, which is still to this day one of my most debilitating symptoms. In college I got to the point where I was dependent on laxatives on and off. My stomach became distended to extreme amounts after eating a normal sized portion of food. Was told it was "IBS" and I had to live with it.
I took some time off from school and worked, still dealing with the constipation and bloating. Cigarettes, coffee, and Zelnorm were the only reason I was able to get up and go to work. But then they took Zelnorm away.(It was beginning to wear off anyway) I went back to college 2 years ago and it has been hell. I have 1 semester left until I graduate and I am determined to make it through. I am panicked now because I know that if something doesn't drastically change, I will not be able to get a job, and I am terrified at the thought of working so hard, to get to the point that I have to move back in with my parents and work part-time when I can bear to get dressed and out of the house.
I am currently dealing with:

* never having the urge to go to the bathroom, it's not like it's difficult to get out, instead, there is just nothing there to push out!
* Within minutes of eating I have pressure, fullness, discomfort, and extreme distension of my abdomen, I look pregnant
* distension is always present, lessens only after several rounds of stimulant laxatives (IF they even work)
* do not have much pain other than the crampy feeling of being so backed up, painful gas, and a tender, swollen feeling belly
* distension is visible and uncomfortable and it is hard to walk and sit comfortably
* laxatives fail to work most of the time and even when I repeat them for several days I still cannot get enough relief and then just feel sick all over
* Laxatives make me feel like I've been kicked in the sides and leave me exhausted beyond belief
* Miralax and other osmotic laxatives do not work at all, only worsening the distension/pressure in my belly, and I can feel/hear them sloshing around in me foever, but nothing comes out, and Miralax causes terrible gas and bloating even after "regular use"



I have also tried every medication there is, Zelnorm was the only one that worked for a little while, but of course they took it away. My morning routine quit working a long time ago and I basically can't go on my own without the use of a laxative.

This is all very debilitating, and has taken away all quality of life for me. I feel I have no hope left, and every day is a struggle to get out of bed and put one foot in front of the other. I watch other people every day and wonder what it would be like to just go about my day like they do. I can walk across campus to class, and if you asked me what the weather was like I would have no idea. That is how consumed I am in this. I have to leave public places sometimes and go to the bathroom to cry. Lately I cry about it daily, my mom thinks counseling would help but I've tried it and I've tried the antidepressants...what I try to explain to her is that I wouldn't feel so upset and sad if I FELT BETTER in general. The rare days of the year that a laxative actually works I feel like superwoman, until the next day when I'm back to the usual.

I recently saw a new GI and she did a colonoscopy on me last week, removed a polyp but other than that it came out normal. She said judging from my history and current issues, she has pretty much used up all of her "tricks" and she doesn't think there is anything she can do to help me. She referred me to UNC's GI/Motility center...where I finally have my first appointment there tomorrow.

As it approaches I am growing more and more anxious. I have done so much research on treatments and surgeries, and I really feel that a colectomy would help me tremendously. Of course, I don't want to walk right in to my appointment asking for surgery.

Has anyone been to a teaching hospital/center like UNC? What can I expect from my first appointment there? And how did other people first begin talking about surgery with their doctors? If I could get this figured out, and if I were a candidate for surgery I would seriously consider it - but I don't want to discredit myself by jumping right into asking about it. I just can't handle another appointment where the doctor tells me I just have to live with it and to try taking miralax.

At the same time I am also worried that they will want to do all kinds of studies and things on me instead of talking about surgery, or they will say I am too young (I'm 24), or that it is too drastic and there must be something else that will work - but I am at the point where I have participated in research/medication studies, and tried everything I could, and I don't have time for doctors to keep saying "Ok, try this for a couple of weeks and see if this works...." Every day that passes is another day I will never get back.

Any advice would be hugely appreciated. I am very nervous for tomorrow and I am doing everything I can to keep myself together right now.

Post Edited (Alibee) : 11/15/2010 11:50:46 AM (GMT-7)

Alibee...I was having the same issues for years I am now 45 with diagnosed colon inertia and pelvic floor dysfunction...What my suggestion to you is if they want to do a transit study(sitz marker study) that is a good idea...It is a easy test you swallow either 1 to 3 capsules over a few days then they take some xrays to see where they markers are that will determine how long it takes for the stool to go thru your colon It sounds like once you have to go it is not an issue of pushing the stool out but they might recommend a defogram. Not to gross you out but basically they insert a barium past in your bottom and you have to expell it out. Not a fun proceedure but that will determine if you have any issues with getting the stool out...I know that there are other tests but not sure. Hopefully the dr will be able to help you.
In my case I am going to have an ileostomy (Nov 17th this wed) after many years of discomfort. You do not need to suffer any more it may take some testing and it is not in your head....Go and get the help you need ...Trixiemom

Alibee
  Hello and welcome, yes they are going to want to do all kinds of studies and tests to figure out what is best for you.  I have had a total colectomy this Feb and still to this day I have issues with air or ie gas and distention.  When I eat food I can feel it reacting as soon as it hits my tummy, then continues into my intestines, so we are trying to figure that out ...

Your so young and if you do not need surgery all the better for you.  But you sound like so many of us did before the surgery.  I do not have a appliance they reconnected me.  We all know how your feeling and what your going through and its a tough road to hoe..  I would feel confident going to a teaching hospital, I went to one and they are on the cutting edge of new technology and treatments, so that is a great place to go to.

Try not too stress as stress makes everything worse, it will put your intestines in a up roar...so try to remain calm.  Peperment tea is good for helping with nausia and gas, but if your like me, nothing really seems to work.

Just be as informed as you can be and always listen to the little voice in your head, if you think they are not doing you right, then go to another doc, and another doc, keep going if you feel like your issues are not being addressed properly.

We will pray for you and we will be here for you if you have any problems or questions...this is a great family to be a part of..

Best of Luck

Leslie

Hi and Welcome !!

Going to a teaching hospital is a good idea, espically since they have a motility area. As far as your age I don't think that has any thing to do with it, my daughter just turned 13 and we have gone through all of theses issues with her since birth,and finally when she was 6 we found Bostons Childrens Hospital which is a teaching hospital with a motility center....from that point on we did have a long road to hoe, but we were finally dealing with a DR that just dealt with motility issues, so that helps ALOT!! They will for sure want to do testing, but knowlege is power, and even though it seems like you have tried everything as far as meds etc you would be surprised at some of the things that we tried for my daughter. But I totally understand about the quality of life, because that is so, so important !! When we got to a place where we knew her quality of life and ours as a famliy was being consumed by not "going", that is when we finally decided to move ahead with colon removal. We started by taking half, then we went back in and took the rest, and she had complications so had to get her rectum removed also,because tried reconnection and she still didn't go(they also took small piece of small intestine),and we ended up with a permanant illeostomy. She actually loves it !! it has given her a life!! We are still having issues with small intestine, and now her bladder is acting like her colon and shes not urinating that well, and just found out that she has a GYN problem , and that all 3 issues are all related ....but her illeo is working great and that part of it is great, and she is not in/out of the hospital as much and is doing more than she has done in a couple of years!!! so I say all that to say that if my daughter only had colon issues we would do all the same things over, and after testing and they reccomend colon removal(and your rectum and small intestine check out ) I would totally go for it, even if by some chance you had to get an illeo it is life changing !! like I said my daughter just turned 13 and she loves her illeo, and has asked me why I waited so long to do it...
Keep us posted, and I will be praying for wisdom for you and the DRS. oh yeah, don't worry your body isn't going to work all of the sudden for the tests, and I do think they will repeat any test if you request it.

Keep us posted,

Krista

Hi everyone. Well I had my appointment today and for once I was able to leave without an office without tears in my eyes. I was a little bit nervous when I was first checking in to the hospital because it was huge, and the check-in and registration process had me going all over the place. Every person at every desk we had to visit was on the phone making personal calls or chatting with other people in reception, which really had me worried. My Mom works in medical offices and is constantly dealing with customer service issues so I was already thinking the worst.
However, when I saw the doctor it was like night and day. She really listened to me and was practically finishing my sentences and guessed almost all of my symptoms. I typed up a bullet-point summary of my history and everything I've tried or been tested for, etc, which she said was a huge help. She has a few things she wants me tested for: Hirschsprung's, because I've been constipated since I was a baby, was underweight, etc...but she also said that she didn't think it was really the issue, she is checking for SIBO, which I've been treated for before but never officially tested, but she said that what she suspects it is, is colonic inertia.
She scheduled me to come in for a day to go through some tests
-the first is the sitzmark study, she gave me 5 capsules, and 5 days before my appointment I'll take one capsule per day, on the 6th day I go get the x-ray, and about an hour after that I have an anorectal manometry/balloon expulsion test and a hydrogen breath test

She said this is a starting point and that if everything shows what she thinks it will show, my colon is "slow as heck". Which made me feel better because that is exactly what I have felt like/thought. I then asked what options I had if I failed any of the tests and she explained everything and said that basically if it was colonic inertia and things still weren't working we would have another "meeting of the minds" and decide if we should just get rid of the non-functioning colon. This of course terrified my mother who was with me, who was instantly asking things like "Well if it is that, we don't HAVE to do surgery, right?" I talked to her about it in the car later and I know it just scares her because it is such a big thing, but she knows I would not get surgery unless I needed it, and they wouldn't even LET me do it unless it really would help me.

So at this point, I don't know for sure exactly what the issue is still, but my paperwork says it is "suspected" colonic inertia. I know the sitzmark test will be very uncomfortable but I can deal with 6 days of discomfort if it will help me figure out if that is what the problem is, or part of the problem. I don't know if my small bowel or stomach are involved but she said we would rule that out as needed.

I know I still have a very long road ahead but at least I feel like I got somewhere with this appointment, and I was so glad she didn't tell me to try more Miralax/fiber/exercise etc. She said I looked very tired, and she also showed me pictures from my colonoscopy and from my ascending colon to half way through there was still stool lining parts of my intestine - and that was with several days of soup and liquids before the prep, and then a two day prep involving several actual preps. So we know that something just isn't working right, we just need to figure out what it is.

I am exhausted and I just have to make it through two more weeks of classes/finals before I'll get a break for Christmas and I can rest some before going back for the tests before classes start again in January.

I'm really glad to have found this site and read everyone's stories and I know I will be checking in daily for more information and to keep up with what everyone is going through. I wish I could go through and give everyone on here a hug, I think you are all so brave and you give me hope and inspiration to keep pushing to figure out my own issues.

Hugs to you all.

Good luck today Trixiemom! Sending lots of good thoughts and prayers your way today :)

Alibee, when do you start your Sitz test and when are you scheduled to go back in for the next appt?  With the way you are doing the Sitz test will you just have to do 1 Xray (on the day you go in for your appts), and do they give you the capsules to take on your own?  Good luck with everything, keep us posted.

Krista - Thanks for the kind words. Although I am still feeling yucky physically, you are right about feeling better mentally, a little anyways. The holidays are always hard for me because I seem to use them as little "deadlines"...last Christmas I was telling myself, "Ok, you might feel bad now but you will get it figured out and next Christmas you'll be better and you can enjoy it."
And here come the holidays again, what used to be my favorite time of year but it's hard not feeling well and seeing everyone else enjoying themselves and eating all of the great holiday food. Luckily close family knows my issues well, but other family members just think I'm being snobby, or a picky eater because I eat so little at family gatherings.

Sorry to ramble, it just came out! I am sure I will get more anxious before my tests in January but for now I will just have to realize I've done everything I can for now and I just have to be patient.

And Krista - I've read other posts of yours, and I hope your daughter is doing great. What a good feeling it must be to know that you have helped her to have a better quality of life, she is a lucky girl to have you as her Mom.

Sonny - my next appointment is January 6th, for a breath test and anorectal manometry/balloon expulsion/etc. and that same day, before those tests I have to go get my xray done for the markers. She gave me all 5 capsules and told me to count back 5 days from my appointment and to take one pill a day (around the same time of day I will have my xray)
I wonder why they are doing it with so many pills...that is a lot of rings to count if they are still there!

They do the Sitz marker pill different. Some only take it once and an X-ray is done after 5 days. Another take a pill every day and do an X-ray each day.

they will probably have you do a couple enamas after the xray and before your other tests.

have you done a sitz marker before? when I recently did mine I was surprised by the results. i quit doing laxatives a week before, had just one medium BM that whole week so I figured I was extremely backed up by the time I took the pill, then after I took the pill, I had one medium BM the whole 5 days after I took the pill, and when we looked at the results the markers were almost out (in the sigmoid colon) on the 5 day x ray (were in the trans and desending colon on day 3). the Dr. is sending me to a colon/rectal surgeon but doesn't think I have "colonic inerita", instead he thinks there might be something wrong with the end of my digestive system as the rings got pushed through to the desending colon/sigmoid colon rather quickly; however, they just aren't moving through that area real fast. I had the anorectal manometry/balloon expulsion test 5 years ago and that was normal, nothing has changed much since then except me getting more annoyed with bloating and hard BMs, so I don't really think thats the problem??

To me it felt like I was just backed up and the markers would not be close to the end, just because I had gone about 2 weeks with just 2 small/medium BMs. It will be interesting to hear what the colon/rectal surgeon thinks.  I see her on Jan 7th.

I'm guessing that I'll be in the "you're not quite bad enough for surgery" group, as I the rings were in my sigmoid colon at 5 days.  I think for the people that get the surgery they are usually still way back at the beginning of the colon, or scattered throughout.  I still don't think there is anything wrong with my rectum, other than the stool is very hard and compacted by the time it get to that point. 

Post Edited (sonnygarcia) : 11/18/2010 2:43:30 PM (GMT-7)

Hi, I am also new to this post. I have suffered from bad constipation/most likely colonic inertia for the last 24 years, through college and all. I understand exactly what you are going through. I went to my first consultant when I was 20 and he, in my opinion wrongly diagnosed IBS. It was only ever constipation. I suffered for years. You sound very bad, I am better than I was since I started taking Duphalac regularly however still have issues. I have a dialated rectum as a result of strainiing and a rectoceol although it is insignificant and doesnt cause me problems. Make sure you see the right people and perhaps a surgeon before your rectum is irritractably damaged and then all that wll be offered to you is an ileotomy, a bag, with no chance for resection. I wasnt diagnosed prooperly and now may have limited my options re surgery. Push for all the tests you can get, dont listen to nonsense from consultant, its your life and your struggle every day, make sure they know what you are going through and what you have gone through up until now, bring along a reletivewho will support you and battle your corner. Make sure you mentin colonic inertia and ask for tests to confirm this. If I was your mother I would insist on these tests

Ciara.