I NEED HELP PLEASE!!!! NEW TO FORUM

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XtremeMisery
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Date Joined Sep 2007
Total Posts : 687
   Posted 9/3/2007 3:30 PM (GMT -6)   
My name is Liz and I am 27 years old. Seven years ago I suffered a cardiac arrest from Anorexia Nervosa. I used laxatives during the four years I suffered from this disease. Shortly after my arrest I had to have a colonoscopy for constipation. I had gone nearly 20 days without a BM. They had tried enemas every day, GOlytle, mag citate, etc. It took three preps for the colonoscopy. After this I was told I had a flaccid colon, but that with proper nutrition i would recover. This has not been the case. Three years ago after many hospital visit (thinking i had kidney stones, but i was just FOS) and after being on Zelnorm for almost a year with no result I had another colonoscopy. They thought I might have a tumor or blockage. Once again I was told I had a lazy colon. For the last three years I have been on MOM three times a day and have ben absolutely miserable. I do not fully evacuate and my body is totally dependent on it or it does not work. I suffer form terrible pains in my right backside and the worst abdominal pain and bloating. I have also in more recent time been throwing up after meals becuase I am so nauseated and have had blood in my stools.
 
I recently went back to a GI doc refferd by one of the docs I work with. He was almost convinced I had colonic inertia. I had a sitz marker test, but the big issue is I passed. I took the pill and then got my period which gave me diarrhea. I am afraid it was a false reading or maybe its not???? At this time he put me on Miralax and prilosec (i have never had heartburn). I am on 102 grams of miralax/day ( the normal dose in 17 grams one time a day)!!!!!! This makes me absolutely sick. I am so nauseated after. I still do not feel complete evacuation and have the pain in by back. The bloating is now worse than ever. I was in last week and had a EGD and they said my stomach looks ok which i figured it would. I am now scheduled to have a gastric emptying test and then to start amitazin??? (which I have only heard negative thoughts about). I do not know what to do. I have been very depressed, crying, and miserable. I cannot live like this. It has been seven years!!!!! 102 grams of miralax and only some relief is not a quality of life. WHAT DO I DO? I NEED YOUR HELP???

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/3/2007 4:01 PM (GMT -6)   
well your screen name made me think you were having a hard time, i hate that things are so bad for you!
are they thinking that removing your colon would help? i mean, i am not sure i really understand what is wrong, i don't know what MOM is or some of those other meds. But it would stand to reason, at least to me, if you had a lazy colon, that if they took it out it would solve your problem, if it's only in your large intestine. That being said, if getting a bag is an option for you, it's not nearly as bad as you may think it is.
Almost everyone on here will tell you that getting a bag is one of the best things they ever did, health wise, anyway. I have had mine for about five months, after 8 years of UC, chronic pain, lots of meds, going to the bathroom all the time, just general ickiness. And i finally decided that's it, i'm done! and i had the surgery and now everything is great! i mean it's not the most super fun thing in the world to have a bag, but it's 10,000 times better than being sick all the time!
I don't know if you are wondering what it's like to have one, or if that is even an option for you, give us alittle more info
hope things start to look up for you!

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/3/2007 4:30 PM (GMT -6)   
Sorry for the lack of info. Yes, my doctor did mention removing my colon, but he siad he does not want to becuase i'm young, yada yada. Personally, I think my life would be a whole lot easier and the quality would much improve. The only problem is, I have all the symptoms of colonoc inertia, but I passed my sitz marker test. Now they are continuing with tests ?? questioning if it is a motility problem, which frustrates me beyond belief.I have been om MOM (Milk of Magnesia) for three years and now a ridiculous dose of Miralax. I have also tried bentyl, xelnorm, reglan, prilosec, Dr. NAtura for two months, all sortsof fiber, diet changescand one other prescription laxative I cannot think of the name. I have been on prescription laxatives for seven years ( cannot be good for the neurons in my colon). If I am not on the laxatives I do not go for about 6-10 days with straining, sikness, bloating, and discomfort. The saddest part for me is I think I may have been a factor in my condition (whatever it may be). The eating disorder not only destroyed my life it destroyed my health. I have never had a relapse since Feb 99. I want to eat and feel good again. I want to be normal and that is what I have tried to do for almost eight years. This is destroying my self confidence, I am always feeling sick, I neer want to wear fitting clothes. It affects my work. I am a nurse and often times after meals feel so sick I do not want to move out of the chair. I am worried that if they do not figure out exactly what this is I will be miserable for the rest of my life. MY family and husband are praying that surgery is an option, but as of now I am not sure. I do not care what the resolution is, I just want to feel better and to be able to eat without sickness. HAve you or anyone else ever heard of anyone still having colonic inertia if the sitz marker test is passed? Should I ask to redo the test since I had my menstrual cycle that week and it causes me to have diarrhea for three days? I am just searching for support from people who understand what it is like to live with a chronic issue. I am not afraid of a bag, being a nurse I see them all the time. Many of our cancer patients have then and I would have never known. Thanks for the response. I hope this helps clarify a little.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/3/2007 5:23 PM (GMT -6)   
Xtreme,

I can honestly relate. I also was anorexic for most of my teenage years and therefore I never knew what it meant to have a normal BM. I only used the bathroom once a week or so and for me, this was normal. However, when I turned 20, I decided that I wanted to be more healthy. I tried to eat more but I kept feeling ill. I could not have a BM without an assortment of laxatives. Like you, I can recall years of hovering over the sink to vomit. I vomitted for 2 years because I could not move my bowels. I too have colonic inertia. I had my colon removed 7 years ago. It helped but not that much. I still had to take tons of laxatives; however, I no longer vomiited. After my surgery, I could eat but nothing solid - I had to eat mushy or liquid foods only. Eventually, I could no longer pass soft foods and I was unable to eat nearly anything. At this point, I was eatting so little that I ended up in the ICU on IV's for dehydration. I became faint, weak, and went into kindey faiure. For the past 7 years I begged my Dr's to help me. I told them that the colectomy was not effective. Unfortunately, Dr's do not listen as well as they should. A month ago, I typed up all of my symptoms and presented them to the Dr when I went to the visit. I would not speak to the Dr when he came into the room. I handed him my paper and asked him to read it. This way, I did not forget anything. (I hope your Dr's find answers for you. Please be persistant! ) I can email you a copy of my information if you want to use my format. Anyway, I would have the Dr sign the bottom of my paper stating that he read it. This way, the Dr knew he was liable if he did not help me. Once I started using this format, the Dr's finally took me seriously and listened to me. Finally, two weeks ago I was put on a ileostomy bag. Now, I can finally eat. I do not eat much because I have a fear of gaining weight, but I am eating. I truly know how hard this is. I teach fitness classes at my gym and my figure and self-image are very important to me. Keep plugging along...answers are coming. You just have to seek them out. I know this is an exhausting process but this forum is here to help you through these hard times.

Best of luck....
Amey

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/3/2007 7:46 PM (GMT -6)   

Amey,

Thanks for your encouraging words, and yes I would love to see your format. IS what I am describing sound like colonic inertia to you? How were you diagnosed? I have been through two doctors already and I cannot take it anymore. I asked the most recent for a referral to the Cleveland Clinic, but he thinks he can figure out he answer. Seven years is long enough without demanding some answers. I cannot rely on laxatives my entire life. When I cardiac arrested it was from low potassium and being on these scares be that will happen again. I know I am not going enough for it to happen, but its a fear. The vomiting is getting out of hand. Fortuaately I have not lost more than probably five pounds. This problem actually makes me feel like I have gained weight from all the bloating. I am happy you finally got some relief and answers. I am determined, but I feel as though I may not say all that I need to when the dr gives me ten minutes to explain. Its when he says I am not sure what is causing this Liz, or maybe its this that i leave crying in frustration and venting all of my issues to my husband and family. This is all so depressing for me and I hate that I do not feel comfortable for my husband. I will keep plugging away, but I will need your guys help. I have no one I can talk to that can relate to what I am going through. Hope to hear back from you soon. Thanks for your input.

Liz


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/3/2007 8:55 PM (GMT -6)   
i don't know anything at all about not being able to go, UC is the oppsitie of that, lol. But I do know that those sitz tests are notorius for being wrong.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/3/2007 9:02 PM (GMT -6)   
Liz,

The laxatives are so dehydating that they can cause you to gain weight...I gained because my body was holding water. When I went into the hospital in June I gained 19 pounds in 5 days from the IV fluids because I was so dehydrated from the laxatives. Over the past 7 years, I saw 13 different dr's until I finally found one that would listen. It was an exhausting experience. I nearly died in June because of all of the laxatives. I was in the ICU for 5 days and I too ended up with a heart condition over the whole mess. Now, I have to take heart medication daily. Please becareful taking them. I know you have to but please be careful. They are so damaging.

Can you send me your email address so I can send you my letter that I used to get my Dr to listen?

Amey

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/4/2007 11:26 AM (GMT -6)   
Amey,

My email is lizzieboo01@hotmail.com. I called the dr again today, but once again I got the answering machine of his nurses and still have recieved a phone call back. I asked for a referral and I do not think that made him very happy. I am not scheduled to go back until Oct. 4 (he wants to see how this huge dose of miralax works) but the thing is I do not think I can tolerate it for another month. I asked my pharmacist at work last week if it was even safe. He said that I am basically taking almost a prep for a colonoscopy each day....that cannot be safe and it makes me sick. I am just running out of steam. I just want someone to realize how bad this really is.

Sommerstorm, that makes me feel better that others have had false readings. I just do not believe it. I think I would have to be off laxatives for at least a week for the test to see how my body really works. Thanks for your input.

It feels great having someone to talk to.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/4/2007 2:47 PM (GMT -6)   
Liz,
You've Got Mail!

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/4/2007 4:08 PM (GMT -6)   

Thanks everyone for your replies and thanks Amey for the letters. i would have listened to you too! This Doc I am seeing now refused to give me a referral. He said that he has only been seeing me a short while and that he thinks he can do more convenient testing here where I live. I am scheduled for the gastric emptying this fri at 8 am. They moved up my appointment a week so its Sept 28. I just wonder if he will respond in the right way with the letter Amey considering I have only been seeing him for a little over a month? I know I have to get off the laxatives and I really want to. I just do not now what I would do then. I have thrown up the last two days from trying to eat a normal sized meal and i am scared to take the Miralax becuase of this. I do not want to deplete what I have left right now. I too was on heart meds for four years. I see a cardiologist still, but since I gained the weight I have no signs of my arrrest. The damage was reversible.

KAthleen, thanks for your response. I have had two colonoscopy's and they showed nothing but a "lazy colon" and "flaccid colon" . Is that how they diagnose UC? I will mention this to the doctor as well though. Keep battling your ED. It is always at the top of my list...to fight this, but I have been lucky. I have not had any relapses and have kept on the 40 lbs ( was just 78) just fine. It took a while but i didi it! Now I speak to local universitites on the danger of Anorexia and what it really can do....we are not invincible. NOw, if I could judt figure out how to fix this problem life would be great. Take Care all of you. I will keep you updated


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/5/2007 8:23 PM (GMT -6)   
Liz,

Good Luck on Friday. I have to say the Gastric Empty was not fun exam. I have to agree with your Dr though. If he has only been seeing you a month, he needs to make sure surgery is the right option for you. I was rushed to the hospital in Sept 2005 and I was immediately taken into the O.R. for surgery for major bowel obstructions. While the surgeon was untangling my small intestines he noticed my colon was collapsing/ narrowing and preventing food from passing through which caused me to vomit. However, he did not fix the problem. Instead he sent me to another surgeon. I finally got the see that surgeon in January of 2006. Even though this new surgeon knew I needed surgery to fix my colon, he ran tests until June 2006. He ran tests for SIX MONTHS! I was so frustrated but that is how things are done in the medical world. I had a corrective surgery in June 2006. My point is that you have to be patient. I know it is hard..believe me, I truly do know. Hang in there...you are doing great!

lakemaggie
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/7/2007 11:40 PM (GMT -6)   

Hi, I am new to this forum as well, but my symptons are very similar to what you are going through, and I know how frustrating it can be when no one seems to know anything for sure. My problem started back in 1991 when I had pain every time I ate anything.  Needless to say, I lost 30 pounds in two months.  Went through all kinds of tests and they found NOTHING!  The doctor threw his hands up and suggested I try Lactaid.  Believe it or not, that actually worked, and after a year I was able to discontinue.  I continued to have painful and infrequent BM throughout the years off and on.  This year it started up again in April, and I spent 4 days in the hospital after going to emergency and they sent me home with pain pills.  They could see there was inflamation in the lower right abdomen, but could not see from CT scan or Ultra Sound what was causing the inflamation.  By July I was in so much pain, had red blood fill the toliet from small BM, and went to emergency one more time.  The doctor on call said he thought it was my gallbladder, and I needed to come back for another Ultra Sound in a couple of days.  He gave me pain pills to hold me over until that time.  When I returned, my hero of a surgeon was in the ER at that time, and he said since they could not see anything on film, he was going to admit me and do exploratory to find out what the obstruction an inflamation was all about

After 3 hours in surgery, I came out with a huge incision and bag attached.  I was diagnosed with terminal ileum and cecum, active enteritis and colitis, consistent with active Crohn's disease. Resection was done, and I was in the hospital 8 days.  That was 7-31-07, and I am still trying to recover from the surgery.  No more pain, but, I am so weak and get dehydrated very easily. 

If you can just find the right doctor, there is hope, and I pray you find it sooner than I did. So, hang in there, and do your best to find an excellent surgeon that will not waste your time, but go in and explore your situation so you will know for sure what is happening to your body.

 


lakemaggie


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 9/10/2007 7:06 PM (GMT -6)   
Thanks for your post. I had the gastric emptying test on Friday...it was nast. I had to eat eggs and an english muffin. All I kept thinking was oh great now i will be constipated. They said it should only take 60 min if everything moved through, but after 90 minutes it still had not all moved through. I have not recieved a phone call with results yet. I see him again on the 28th. He wants me to start amitazin, but I have heard very bad things about this. I had to stop the 102 grams of miralax for a couple days and have not gone at all. I had to take some MOM to go at all. Its been four days again and i know if I do not take laxatives it will go one forever again. I too hope that I find the right doctor. This one is trying, but I cannot take the " i don not know" after seven years of constipation. I am trying to hang in there....its sad that the only time I feel good is when I dont eat. I do not want to live like this.
 
liz

lakemaggie
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/10/2007 9:11 PM (GMT -6)   

I can relate so well with your frustration and pain.  You need a good surgeon that will skip all the experimental crap, and just take a look inside.  There is something blocking, and until they find it, you will continue to have problems.  I used suppositories until they stopped working as well.  Tried all the colon cleansers, and it helped some, but since I already had damage, it was only a temporary fix.

I am so sorry you are having to go through this, I really am.  I was in tears so many times, and my poor husband did not know what to do for me.  No one could do anything and I really didn't expect them to try.  I just wanted some doctor with common sense to help me out, and thank God, I found one by accident.  I have a lot to deal with, but the pain is gone!  That is worth what has to be done now.

Keep searching and pray for your hero to find and help you.  He is out there, I promise.

Keep me posted, and I wish you the best of luck.  Start by getting rid of the doctor you have now. He is wasting your time, and you are paying for his services.  I don't want steroids or any drug that can do more damage and than good.  Know what I mean?

 

 


lakemaggie

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