# Colectomy



## Guest (Oct 12, 2010)

Hi everyone,I've been on the boards for quite a while, but more as a reader, with an occasional post/comment here or there. Let me start out by explaining a little bit about myself and my condition.​I'm a 24 year old, who has been having bathroom issues for as long as I can remember. Earliest memories are of my parents giving me enemas or bribing me with Barbie clothes to go to the bathroom. They never really understood what I meant when I said there was nothing THERE to come out! As I got older I was extremely active elementary-high school and didn't pay much attention to my bowel habits. I went maybe once or twice a week, sometimes straining and pain were involved. 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.I took some time off from school and worked, still dealing with the constipation and bloating. Cigarettes, coffee, and enemas were the only reason I was able to get up and go to work. I went back to college 2 years ago and it has been hell. I have 1 1/2 semesters 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
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 very visible and uncomfortable and it is hard to walk and sit comfortably
I have had occasional bleeding following the use of dulcolax (bloody mucus)
laxatives fail to work most of the time and even when I repeat them for several days I still cannot get relief
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.
​I have also tried: Amitiza (did not work and made me miserably ill), Bentyl, Zelnorm (somewhat worked and they took it off the market), linaclotide(drug trial, did not work, is similar to amitizia in that it pulls fluids into the bowel but does not make them move, miralax, dulcolax, ducosate sodium, papaya and other digestive enzymes, magnesium, metamucil, Align, every special diet imaginable, up to 48g of fiber daily and I thought I would die, I now eat a bland diet and only once a day as that is the only way I can still SOMEWHAT function. I have burns on my stomach from long-term use of a heating pad. 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 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. I also don't have friends here because it is impossible to make any, and my family lives hours away. I am going to a new gastro doc next week, and I am desperate for help, but I am so terrified she will say there is nothing she can do and for me to just drink more water and eat fiber and exercise and not stress out.I need some advice on how to make it clear to my doctor that something needs to be done because I feel my life and my future slipping out of my fingers every day. I can't live like this anymore and I am tired of waking up and going to bed in tears.I recently met 2 people who have had a colectomy to treat their constipation and slow motility, and they say that it was lifechanging. Sure there are side effects and you may never have what other people consider a "normal life", but even going to the bathroom 10x a day would be a normal life compared to what I have now. I am already in the bathroom that much, but nothing ever comes out. And I could care less about scars. I just want to be able to get up in the morning and do what everyone else does, instead of spending hours, miserable, trying to get some kind of movement.I am at the end of my rope and I'm so tired. If anyone has any words of advice, on how to talk to a doctor to get them to really listen, or what I should ask them for as far as tests go (colonoscopy first or sitz marker)I guess what I am most afraid of is that she'll tell me no way on the surgery or that there isn't anything she can do, or I should try miralax. I would be very offended, and I might have a total breakdown right there in her office if she says that to me!OH what a miserable existence!!Any words of wisdom or experience would be so appreciated.Thanks if you took the time to read this


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## DaveC (Feb 1, 2010)

Yeah i hear you.Sometimes Dulcolax help but not long term as the body become tolerant to it.


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## nowandthen (Jun 17, 2010)

First of all, you need a good gastro doctor to determine what is wrong,so then they can treat that.Two weeks ago I was EXACTLY where you are. I told my doctor I was so scaredthe gastro doctor would tell me I had to quit the stimulant laxatives and thenI didn't know what I would do! I was taking 24 per day.I found a nice gastro doctor who asked me to give miralax one more try, exceptthis time she wanted me to do it her way. And after two failed tries previously,it worked this time. I wish the other doctors had told me this.I hope you will give the miralax one more try.1. She told me to keep taking my stimulant laxatives exactly as I had been forthe first week. I couldn't count on the miralax working for me that whole first week.2. The second week, she told me to keep taking the miralax as directed, but totry to taper the senna laxatives, using them only if I needed. I was shockedthat after 1-1/2- 2 weeks, I was able to quit the senna laxatives.3. She told me to take 3 doses in the morning (not 3 capfuls - 3 doses as perthe directions) and 3 doses in the evenings, along with 14-16 oz of water.4. The usual other stuff - high fiber, lots of liquids during the day, exercise.Low and behold, it actually started working and now I've cut way back. 3 dosesin the am and 3 in the pm is just too much. (some people take 2 doses in am and 2 in pm)But you may need that much. Remember, you have to stick it out and you can't quit after the first week. Useanother laxative that first week and second if you need to. It takes time, and ifit will work for me, I don't see why it can't work for anyone. I thought there wasno hope of getting off the 24 senna tablets per day.


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## Guest (Oct 12, 2010)

nowandthen said:


> First of all, you need a good gastro doctor to determine what is wrong,so then they can treat that.Two weeks ago I was EXACTLY where you are. I told my doctor I was so scaredthe gastro doctor would tell me I had to quit the stimulant laxatives and thenI didn't know what I would do! I was taking 24 per day.I found a nice gastro doctor who asked me to give miralax one more try, exceptthis time she wanted me to do it her way. And after two failed tries previously,it worked this time. I wish the other doctors had told me this.I hope you will give the miralax one more try.1. She told me to keep taking my stimulant laxatives exactly as I had been forthe first week. I couldn't count on the miralax working for me that whole first week.2. The second week, she told me to keep taking the miralax as directed, but totry to taper the senna laxatives, using them only if I needed. I was shockedthat after 1-1/2- 2 weeks, I was able to quit the senna laxatives.3. She told me to take 3 doses in the morning (not 3 capfuls - 3 doses as perthe directions) and 3 doses in the evenings, along with 14-16 oz of water.4. The usual other stuff - high fiber, lots of liquids during the day, exercise.Low and behold, it actually started working and now I've cut way back. 3 dosesin the am and 3 in the pm is just too much. (some people take 2 doses in am and 2 in pm)But you may need that much. Remember, you have to stick it out and you can't quit after the first week. Useanother laxative that first week and second if you need to. It takes time, and ifit will work for me, I don't see why it can't work for anyone. I thought there wasno hope of getting off the 24 senna tablets per day.


I understand what you're saying, but my issue is that I actually started out with the osmotic laxatives, and miralax, etc. Only in the past year or two did I start taking the stimulant laxatives after having surgery for something not digestive related and not being able to go AT ALL, and found that they worked MUCH better than any other laxative had been working previously. My issue is that no matter how liquidy or soft my stools are, they do not make it close enough down to even be pushed out. I guzzle water and my constipation is not due to dry stool or stool that lacks bulk or anything like that. There is just no movement. Even with miralax everything just sloshed around in my belly for days and doesn't come out. So I appreciate the comment but I have definitely gone the miralax route and had zero success. In addition, my neighbor is a physician and she said miralax has not been studied for long-term use and that it is basically a powdered plastic, and it is not normal to have to take large amounts of any laxative for an extended period of time because it doesn't solve the actual problem.I am so tired of stuffing myself with drugs and things and I think there just has to be a better way to fix my poor belly. I am hoping to learn more about tests and the possibility of looking into surgery. I am graduating college in the spring and I am terrified of my future if something doesn't change.


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## nowandthen (Jun 17, 2010)

I hope you can find a good gastro doctor to help you.Some are better than others, so I hope you find a goodone. I wish you the best.


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## Guest (Oct 13, 2010)

nowandthen said:


> I hope you can find a good gastro doctor to help you.Some are better than others, so I hope you find a goodone. I wish you the best.


Thank you so much,I really hope so too. I have been to quite a few and I know what you mean, I get my hopes up every time. Cross your fingers for me, appointment with a new gastro is next Tuesday.Thanks for the kind words.


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## annie7 (Aug 16, 2002)

alikaye--i totally understand and sympathize with your misery--sounds a lot like what i go through on a bad day/week/etc. and you suffer through it all on a daily basis... good luck with your new doc. and if she doesn't understand your situation and start you off with all the tests--sitzmarker etc--that precede a colectomy--then get a new doc and keep trying til you find one who will help you. it's so hard and frustrating finding a doc who takes constipation seriously and is aggressive about treating it. fingers crossed!! let us know how it goes.


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## nowandthen (Jun 17, 2010)

Yes, please post and let us know how it goes with the new gastro doctor.We care! Thanks.


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## Guest (Oct 23, 2010)

nowandthen said:


> Yes, please post and let us know how it goes with the new gastro doctor.We care! Thanks.


Hi again everyone,Well I had my appointment today and I have mixed feelings. I typed up my entire history and also the ways in which this has ruined my quality of life and gave them to the nurse when she brought be into the room and took my blood pressure and stuff. Then the doctor came in and said she read through my history and my information and said said "I basically don't think there is anything I can do to help you" She said based on what I told her and all of the things I've already tried she wants to refer me to UNC's gastro people because she thinks it could be one of two things: hirschsprung's disease or the fact that my colon just stopped working. I don't think it's hirschprung's because although I had constipation issues when I was little, they were intermittent and if there is something there that needs to come out, I can push it out. I think she was a little confused. My issue is that nothing ever seems to get to that point, it just stays stuck way up in my intestines and doesn't move. She said if I go there they'll run tests and if I feel like they aren't helping me or listening/paying attention (which can be a risk when you go to such a large hospital like that) then I can come back to her and we can "start over" and try a few other things and if nothing ends up working again, she can refer me to a surgeon herself. She also sent me to have an xray of my abdomen today and the office just called me back and said there wasn't any blockage or anything - just that my colon is filled with stool (duh, I haven't gone in days).I am uneasy about going somewhere like UNC because I feel like to them I will just be a number. She referred me to UNC and I have a colonoscopy scheduled in 2 weeks before I go to UNC, which will be the week after. Unfortunately, I live in a dorm and it's bad enough being in the bathroom as often as I am, just trying to go, I can't imagine how embarrassing it would be to do the prep in my dorm room as well. My mom is driving up the day of the procedure, but I am thinking of going to a hotel nearby, and doing my prep there.She also wrote a prescription for a *very large *amount of miralax and told me to try taking 2 caps of it twice a day for the next 2 weeks until my next appointment with her. I HATE MIRALAX, I have tried it so many times and it makes me feel terrible. She said she isn't expecting miracles with it but wants me to try it anyway. I hate the fact that it hasn't actually been studied for long-term use and that all it is is polyethlyene glycole, which is powdered plastic. I've been taking it again for two days now - it does make the stool softer, which would be great for someone with occasional constipation from dry stools, but it doesn't actually make your body MOVE the stuff out, so now I am just full of _soft_ stool and lots and LOTS of gas. I think I am stopping the miralax soon, I'll give it another week but like I said I've gone through bottles of the stuff and it's expensive, doesn't make me go, and makes me feel absolutely gross and awful and gassy...so I don't think it's worth it.Anyway, after the appointment I was so uncomfortable that I went out and bought a fleet saline enema and used it. Unfortunately all that came out was what looked/felt like a handful of small rocks and that's it. I guess I will just have to wait until my next appointment and see what she says. I have a colonoscopy scheduled in two weeks, and then my fist visit at UNC is scheduled the following week.Does anyone have any advice or experience with larger hospitals or clinics, like UNC? I am worried I will go there and they will just tell me I'm constipated and to just deal with it.


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## annie7 (Aug 16, 2002)

from what i've read about the unc from other members on this board, it's an excellent place to go--the docs are all extremely knowledgeable, caring and up-to-date on all the best treatments--believe me, if i had the money i'd go there in a heatbeat. i've also been a unc donor for years, been receiving their magazine and newsletter and have participated in some of their research studies. i really think you'll be in good hands there. you've probably checked out their website.. http://www.med.unc.edu/medicine/fgidc/welcome.htm i think your idea about doing the prep in a hotel room is a good one. you'll have privacy there. when i was a student i had a lot of trouble going in the dorm---no way could i have done a colonoscopy prep there--i need my privacy for that.good luck with everything...you're on the way to getting to the bottom of all this and finding some relief.


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## BQ (May 22, 2000)

Ali definitely do the prep in the hotel if you can. It will be much more comfortable for you there. UNC is an awesome place. They are experts there.. not just specialists. Don't worry too much about being treated as a number.... you need to find out what is going on and hopefully _Finally_ get some relief. This has been your whole life up til now! It is time to see the big guns. If their bedside manner is less than stellar.... don't worry about it because it sounds like this new GI you saw was pretty good and also.. most importantly.. willing to work with you afterwards.Right now.. I would focus on getting some real answers and hopefully treatment that works... whatever it may be.Just be very clinicial in your communication with these Docs. Bring your info but maybe in the interest of time... knock it down to bullet points so they can quickly read it. Be blunt and brutally honest and clinical. (Including the quality of life (QOL) impact!)This is a major problem and you are using their brains and expertise to help you solve it. I say go and use the daylights out of them!Keep us posted.


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