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TOTAL COLECTOMY PART 29

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Posted 12/19/2009 1:27 AM (GMT 0)
Oh Lizzie,

You sound just like me and my original situation in 2006 with everyone giving basically the same opinion, then everyone being wrong, no sigmoidocele at all, Not one of 3 colorectal surgeons advising the complete range of testing. I just went with the docs who cited the most experience and said We can fix your problem. and then running around trying to get my life saved afterwards from the disastrous results of that surgery. Then being called crazy because other docs either didn't want to deal with the damages or did not understand the damages.

I got to thinking, did you have your defecogram and anorectal manometry scans reread by different radiologists prior to getting your reversal? Maybe your tests were misinterpreted like my original 2006 defecogram was. Only on review of the original scan for my law suit did I have other radiologists read it and No SIgmoidocele. BUT WHAT PATIENT RUNS AROUND GETTING SCANS REREAD BY OTHER RADIOLOGITS? We trust what we are told and make the best choice we can at the time. I think we both need to keep with that thought "made the best most rational choice we could with the information we were given at the time." That is the tricky part to remember and a part I'm still battling with.

Good luck after that soup. Glad you have family around. Rosemary
Posted 12/19/2009 1:45 AM (GMT 0)
Not having a good night....

Sitting here after throwing up twice after my soup and talking with my inlaws on what the hell to do to try and get me help. Talking about what we will do if I get back to work and my managers notice that I am not doing well and/or something happens and I end up having emergency surgery and lose my job. We would probably have to forclose on our house, etc, blah, blah, blah.....

Its just so sad to sit here and think about. I am in a lot of pain and very distended even after throwing up....its just hard. And yes, rosemary, i do have to remember I did what was best for me at that time and what three doctors were telling me was what was the best thing to do. If i didnt think that way I would go crazy and youhave to too!!!

Love you all.

Lizzie

Posted 12/19/2009 2:25 AM (GMT 0)
Hi Lizzie,

I know we have to save our lives and not go crazy. Sometimes I feel like I am, but then I pull it together. Even if I win my law suit I'll never get back what was taken from me, but I refuse to lose my soul too. So you did throw up but the pill camera did not come up so maybe it will go through you OK and even tell the information that is needed. This could actually work out OK. I'm sooooo hungry but I'm more tired so am going to sleep. Hope you get some rest too. I don't know how you drove 9 hours in the shape you are in. God Bless. Rosemary
Posted 12/19/2009 2:54 AM (GMT 0)
Hi everyone,

First of all, I think I win for being the "old lady" around here. I turned 54 a couple months ago! It's so hard for me to read about all you youngsters with such terrible issues. I lived an entire life with colon inertia and it was miserable, but I had no idea how many others suffered too.

Lizzie,
You can't beat yourself up for wanting to have your reversal. Your doctors never would have done it if they didn't think it was reasonable. I remember how miserable you were with your skin irritations, leaks, etc. so why wouldn't you want it reversed if it was possible? At least now if you have to end up with a permanent ileostomy you'll know you did everything possible. Also, if you get another ileostomy hopefully you won't have the same issues with your stoma. It sounds like Rosemary has given you good advice and lots of information. Rosemary, you are amazing with your research!

Amey,
I'm so sorry for your situation. I know you've been through so much yourself, and dealing with elderly parents/in-laws isn't easy. You're an amazing person to handle so much, but I hope you're still taking care of yourself. My best friend died of panceatic cancer at 47; she actually beat the odds and lived for 7 years with it. It is a horrible disease, and adding your mother in law's alzheimers must seem overwhelming. Is there an adult day care you could take your mother in law to a few days a week? A friend of mine has a mother with alzheimers and she takes her during the day while she works and picks her up in the evening. If that's possible it would at least give you a little break. Also, call hospice. You don't have to wait until your father in law is in the final stages, hospice will come anytime there is a terminal diagnosis. My best friend is a hospice nurse and she said so many people wait until the end to use hospice, but they can be a terrific support system for family as well as the patient. I would check it out as soon as you can.

Jen and Jenise, glad you both are doing well. No snow here in Florida, but lots of rain today. It's actually supposed to get into the high 30's Sunday night....close enough to snow for me! I grew up in VA with snow and I have to admit I don't miss it at all:)

Lori,
As always, I'm thinking about you and hoping you somehow have a good holiday season. I hate to wish my life away, but I hope the next 6 months fly by for you. You deserve to have a good life, and I'm sure a traditional ileostomy will seem like a miracle for you!

Off to bake some cookies....oh...I'm so excited. I just found out I don't have to have Christmas dinner at my house!!! I must be showing my age, because the thought of having 16 people here seemed overwhelming. My stepson's in-laws have a mini mansion close by and want us all to come there for dinner. My husband and I accepted so fast you would have thought we'd never had a meal in our lives. It's just that we downsized from a large home to a 3 bedroom condo a few years ago without realizing our kids would marry and have kids and we'd need all that extra room. One stepson has 2 kids and married a girl with 2 kids, my son married a girl with a son, and now they have a baby, and another stepson is married, so our family has increased alot in the past few years. We just downsized without thinking it through. My husband just wanted out of mowing the yard, cleaning the pool, replacing the roof etc. Thinking about our family growing didn't enter his mind....or mine either! It's not usually a big deal, but holidays can be a little hectic. Now we can all spread out at the big house and have a great time. They even have five bathrooms, so I'm good to go!!! LOL

Hope everyone else has a good weekend, and Lizzie, I'll say a prayer tonight that somehow you can get through these next few days sweetie.

Hugs to everyone,
Janie
Posted 12/19/2009 4:21 AM (GMT 0)
Janie - Thank you for your suggestions. Hospice will be here Sunday to evaluate the situation.   I spoke with my FIL's cancer doctor today.  The doctor is not sure my FIL will make it to Christmas. He said that if my FIL lives a couple more weeks, he would be amazed.

I will definintely look into finding an assisted living place for my MIL to visit during the day after my FIL passes.  Eventually, I will need to return to work and I cannot have her alone in my home.  It would not be safe enviornment for her.

Lizzy - have you been able to keep down the camera with all of this throwing up?  I do not want to tell you to go against your doctors but if you cannot keep food down, you may need to take something to help move the food through your body.  I worry that your potassium is dropping and you may be in a critical state. Plus all of this vomiting...you have to be depleted. Can you drink prune juice to get some potassium in your body? 

Jen - How can you hate the cold?  Most of your pics show your family in the snow. Your back yard is amazing! I am glad today is better than yesterday.  I remember thinking that everyday was suppose to get better than the last. Unfortunately, that was not the case.  Some days were good, some days were bad, and some were very bad.  Even now I have tough days where I spend most of my time in and out of the bath tub trying to give my butt a rest. I hope tomorrow is another good day!


Jenise - I am glad you're going to the bathroom.  You seem to be do very well considering you are a week out of surgery.  How do you feel?  Do you still have an appitite?  Do you feel your strength returning?

Rosemary - You are amazing.  You are a plethora of information and I love reading your posts.  I learn so much from you.  Thank you for being such a huge support to us all.

Thank you all for your kind words and support.  It means a lot to me. 

Take care,

Amey

Posted 12/19/2009 5:06 AM (GMT 0)

Hey Girls,

I know it's been awhile but know that you are always in my thoughts and forever in my prayers.  Had my daughter home from the 9th-16th for our Christmas; we hada wonderful time!:)  Her visit was way too short but extremely pleasent!  It's very cold and frequently snowy in NY, definitely NOT my favorite time of the year.  Have been extremely busy at school with the holidays and I'm also tutoring a first grader two days a week after school.  I'm getting my stent changed on the 28th, can't wait as this one is very uncomfortable, just praying that it isn't stuck.  I have started the greivence proceedings at my job for the 30 days pay they want and that is all going fullforce starting Jan. 4th, then everything is done within a time frame. My drs wrote very detailed letters for my case and have been very supportive to me through all of this, I am very blessed to have been finally led to them and having them save my life:)

Lizzie-I just want to hold you to take away all of your pain:(  I know you can keep fighting, you're the strongest person I know, DON'T ever give up, someone out there CAN and WILL HELP YOU.  try to remember that it took 6 gi drs and 7 urologists for me and I wouldn't be alive today if it weren't for these current ones!  I LOVE YOU!  FIGHT the FIGHT Girl!!!!!

Janie-So glad you are doing well!!!! BTY, I'm 47 but have experienced enough to be 80 or 90. Totally just a number but am so looking forward to next summer when the dr figures out what he can do with my kidney and I can feel better for the first time in years:) Love and hugs to you:)

Jen & Jenise- So glad that your surgeries are over! Let your body heal, don't do ANYTHING!!!!!!! Walk and rest for the next 6 weeks and stay on the low residue diet for a loooooooooong time even if your surgeon tells you otherwise, don't try to test things, it takes your body a long time to heal and adjust.  Enjoy the holidays:) Hugs and love to you both:)

Hodaya-Miss our chats; hopefully my life will slow down but don't see it happening until after this school year.  Try not to focus so much on the poo as the stress of it all will mess up our bowels. Stick with the diet and continue with the yummy chocolate; I'm sure you haven't gained too much weight, I know we all focus on that more than we should:)  Love you forever!!

Rosemary-Can't wait till I get time to chat with you, you've helped many of my friends and are a wonderful addition to this board.  Prayers to you.

Marisa, Tracy, Christy and others, I hope you are well and enjoying this wonderful season.

Love, peace and prayers to all of you my friends,

Judy

Posted 12/19/2009 10:41 AM (GMT 0)
Hi,

Thanks for the compliments on my research ability. In my "former life" as a school teacher and a school district grant writer, I had to do a LOT of it, but in the education field.

BUT this medical research is ALL too late for me to save my own body. Like I didn't have the sigmoidocele in the first place but did not know of sending my 2006 pre-op defecogram to forensics companies or pelvic radiology experts I found on the internet PRIOR to my unneeded disastrous sigmoid colon removal like I learned to do AFTER the fact. It's a very sad commentary on the medical profession that a patient should have to actually do their own medical research to figure out how to get pre-op tests read correctly, what other tests should be done for their presenting issues and so on. That's the doc's job, though my 3 docs prior to original 2006 surgery obviously weren't doing theirs!

BUT I did put together my entire law suit through research, so that was good. AND I did actually get my life saved by doing internet research by finally tracking down the doc who saved my life by doing the 2007 adhesion lysis and ileostomy procedure. So at least I got my life saved doing this.

I am soooo glad that my research has helped others. That is what things are all about for me now is to put what I went through and learned too late for me to good use so I can help others. Glad it helped.

Now we all gotta research out a cure for Lizzie. Hers is one of the worst cases I've ever heard of. A vomitting patient going from doc to doc, hospital to hospital. She must feel like saying HELLO! THIS ISN'T NORMAL!!!!!!!!!

When I was going to all 11 of those surgeons all over the country with my rectum, colon, and small bowel scarred in from the non-indicated 2006 surgery and I presented with inability to eat due to small bowel adhesion obstructions, and unable to have bowel moves due to scarred in colon and rectum (at one point all this had been diagnosed and I could physically show docs on my xrays I actually held up in front of them), some would just sort of drift off into some weird comment like: "If you don't eat you won't be able to move stool."

I came out of many an appointment thinking, doesn't the medical world GET IT that if your small and large intestines are basically closed that you are going to die? I began to feel UNREAL, like they didn't think I was human, like I was a non-person. It was very invalidating. Maybe that was the idea because they didn't want to deal with another doc's screw-up (as mine was). Most of yours are complications, bad outcomes, but well - intended and consciously analyzed by your docs.

Rosemary
Posted 12/19/2009 9:59 PM (GMT 0)
Lizzie,

I didn't mean to blame you for wanting the rversal. I just remembered my own situation when my docs kept saying that I am too young for a permanent ileostomy and when they rather denied my suffering.
I repeated again and again that I am not too young for a preocedure that could bring my life back or give me more quality of life.

That's what I remembered when you say your docs have this opinion.
But I also have the feeling that this is only an excuse/pretext for doing nothing/not being forced to take responsibility.

I just hope like every other person here that my advice to go for the small bowel manometry will bring the info what is going on with you.
Remember I was the one that kept repeating that you deserve a small bowel manometry! Noone has ever heard of this test before on this board!

Post Edited (pelztier86) : 12/19/2009 3:06:48 PM (GMT-7)

Posted 12/19/2009 10:31 PM (GMT 0)
Hello friends!! Well I got home and the doctor did find a staple that was poking through and causing a lot of inflammation and bleeding. No sign of Crohns in the small intestine and things are healing very well. I think I will always have the cramping and nausea. Which I can just take medication for. So I can live with that. Just grateful that I didnt have to have any of the small taken out.

Lizzie, would your doctors consider giving you the colostomy again? It seems like you were doing so much better when you were not hooked back up. I know you hated that dang bag, but was it better than feeling so crapy all of the time? I just feel so bad for you.

Jen, how are you feeling? Have you started to gain weight yet? I am at 130 now which is still about 15 pounds lower than my usual. But, I want to stay where I am now. It has taken me six months to go from 110 to 130. All those Christmas cookies are so good!

So, I finally put up my tree last night. I thought I had one more week before Christmas!! I still need to get things wrapped.

Hope everyone is in good spirits!! Love you all
Posted 12/20/2009 12:13 AM (GMT 0)
Marisa,

Was it a staple at the anastomosis? Did they have to take it out or leave it in and just know what's causing the bleeding?

Peltz,

I posted to Lizzie some places I found that do the small bowel manometry (Antroduodenal Manometry). She said she'd print them off. I fear she is soooo weak by now that she needs someone to make the appointments for her and to drive her. I think she is in the state I was in when I was unable to eat for 7 months. After awhile, you just want someone to take over and help you. Yet you have to keep on advocating for yourself as nobody else can do it. I too feel that CC is passing the buck. But sooooo many places do that. Things suddenly become "all about them" not about the patient. Maybe the camera test will end up telling what she needs. We can only hope and pray. She's a strong lady.

Lizzie, we're all praying for you.

Personally I gotta STOP eating all this sugary food I'm eating and eat better. I've been on this big Pity Party of my own and need to get with the program and gain strength for upcoming trip.. That's my resolution. Gotta stick with it and put all the horrid details of my 2006 original unneeded surgery behind me and literally turn them over to my attorney. I know he is the best. And as I can't have ME back, maybe I can affect some change in the way my 2 original surgeons disregard people's bodies. Maybe the state med board will take some action so others will be protected. I just can't stand the idea of what was done to be (needlessly) and the severe damage to have gone in vain. But, if it is, then it is. Only time will tell. I need to be grateful for the now.

Rosemary
Posted 12/20/2009 2:22 AM (GMT 0)

Marisa I am gaining some weight.  I am at 106.5 which is up from 101.5 prior to my last hospitalization.

I am doing pretty good right now. I am eating well.  I eat just about anything I want.  I do stay away from raw vegetables things like that.  I eat small amounts because I quit taking my Reglan.  That stuff would make me sleepy sometimes then other times make me feel like I was going to jump out of my skin.  It was the worst feeling.  I can deal with the drowsiness but the nervousness, agitation, and restlesness I can't deal with.  So I quit taking it.  I will discuss this with my GI doc and surgeon when I see them in two weeks.  Just can't hack it.  Of course not taking it has its consequences.  I feel nauseaus after every meal but unless I overeat I don't throw up.  So might just have to live with that.

I have been having terrible lower back pain.  Did anyone else deal with that after surgery?  I am taking pain meds still but not for my abdomen but for my back.

I am having several bowel movements a day with the help of suppositories but there again I can live with that.  So all in all things are going well right now.  Knock on wood. 

I feel so bad for you guys that are having a hard time especially you Lizzie.  I really feel bad for you and just simply can't believe the docs aren't being more proactive.  The picture you sent me just makes me feel so bad for you.  I know you are miserable and in pain, and I wish I could do something for you.  I just hope that you get some help soon.  Something is not right.  You are going to have to get to another doctor...someone that will help and listen to you.

Well I think it's time for bed.  It is like 9:15pm here and my husband is still out sledding with the kids.  I am sure they are having a ball.  They were meeting friends and having a campfire and roasting marshmallows and sledding.  Last year I was all into it but this year physically can't do it plus just too darn tired all the time.  Oh and Amey I do hate the cold.  I tolerate it hence all the pics on FB of cold weather pics.  But I don't like it.  I just don't have enough body fat.  Before my dad got dementia we would go skiiing in Breckenridge, Colorado.  We did that for many many years.  I would freeze my butt of the entire time but skiing was worth it!

Jen

Posted 12/20/2009 3:04 AM (GMT 0)
Hi Jen,

Glad you're doing OK. I had to stop Reglan too (I was given that after my disaster 2006 surgery.) Reglan had the same effect on me; jittery, nervous, agitated, could not focus. That drug is dangerous I think for those of us who can't tolerate it. I even asked if there was an optional drug and there is but it is not FDA approved in the US, so....just eat those small meals.

I'm worried for Lizzie too. I was just on the Medical University of South Carolina web site doing some research for my suit and they have amazing tests of all kinds especially for small bowel, stomach, and vomiting issues such as lizzie has. Maybe that would be a place for her to go if she is strong enough. I forget where everyone lives, geographically.

Rosemary
Posted 12/20/2009 3:23 AM (GMT 0)
Hey guys...

Well today has been a long day. I just got home frm the ER. I was there for 7 hrs ( I did go to a different one and so happy I did). I was in so much pain this am and so distended I had to get some relief. I did digitally extract some stool and headed to the ER. They did a flat plate series of xrays standing and laying down. I am so impacted on my right side and the doctor took the time to go over the xrays and tell me exactly what is going on. They really wanted to admit me, both the surgical resident and attending d/t the firmness and distention. They are very concerned and I also called CC and the on-call surgeon for GI suggested I stop the test. They were going to admit me and put in an NG and have my pain controllled over night, but I was not at the correct hospital and they were just general surgeons and so they decided in the end that I was to come home, stop the test, and try to see if laxatives will work this out and if not then I have to go back tomorrow and be admitted. I literally look 6 months pregnant and my belly is rock hard. I just took half a bottle of MOM and going to see if I can get some relief. So far I am still in pain and nauseated so who knows what the night will bring. They said "we are fascinated by your situation" and they agree they think I need some surgery to fix whatever is going on. I had all dilated bowels with air loops on the right side and was ful of stool. They were so nice and it felt like they really cared and wanted me to get help. At the same time they ewre very nervous to give any real direction becuase they were not colorectal surgeons.

I had labs drawn and everything was ok for now. My potassium has come back up and my cbc looked good. They said although hte xrays did not show an obstruction after hearing my story they can see how my rectum is physiologically obstructing the stool. For now, I am at my parents just trying to get through the night and see if something can move this stool. I had the pill in and box measuring infor for over 50 hrs and the directions suggested 48hrs. The radiologist said I either was able to get it out when I digitally stimulated today or its stuck in the huge mess of stool. Either way I had to stop the test...

Peltz- I am not upset with your words or advice at all and I appreciate all you have done and said and I listen to your advice very intentively. You have some great ideas...and the small bowel manometry is something I will def try and get done somehow, somewhere with Rosemary's contact info. I thank you from the botom of my heart for all you have researched for me. Sorry if i seemed defensive, I am just so frustrated and Rosemary has hit it on the head as to how I feel. I have tried so hard to get someone to listen to me, but no one wants to talk ileo again with me. They keep trying to find alternative solutions that I know are not going to work. I know this in my hands to do what I have to do for myself and I am...going to do my best. I just have my husband, family, house, etc to take into consideration too. I just feel so bad for what has happened to me and feel somewhat responsible becuase I did want the reversal. I know I have to put me first, but I have never been good at doing this. Thanks again for all your advice and support. xoxo

Jen- Thanks for all your love and concern. I am so happy you are doing better and the feelings you has with reglan are exactly why I had to stop taking it....its so hard to keep taking if you have those side effects. You saw my belly tonight...its horrible and I cannot believe how quickly I have turned for the worst. Love you honey.

Thank you everyone for all of your prayers. I am hoping to get in touch with my surgeon Monday and hope he will see me before our schedule visit in Feb. I need to take action now or I am afraid of what is going to happen. You all are angels in my life and I could not get through any of this without you....I am sure surgery is ahead and I am doing my best to make the best decision to give me my life back. If my surgeon will not see me to hear what I have to say then I will have to see one of his colleagues. I was given 4 mg IV dilaudid, phenergan, and zofran. I ate about 2 oz turkey tonight and some sherbet. So far I have kept it down. I feel horrible that I have been on here complaining about me so much....I hope I have been there for all of you as you all need me in return. If I have not been, I am sorry. Hope you all have a good night...

Love you all.

Lizzie

Posted 12/20/2009 4:01 AM (GMT 0)
LIZZIE....YES....YOU'VE MADE A MAJOR BREAK THROUGH.....YOU GOT DOCS TO LISTEN TO YOU....YOU HAVE DONE IT! As you went to the new hospital AND they took you seriously and took xrays.....there is your PROOF! You also got permission to stop the camera pill test. Sounds like you had it in you long enough anyway if I interpret you correctly.

Your CC surgeon HAD BETTER SEE YOU PRIOR TO FEBRUARY!!!!!!!!!!!!!!!!! The docs at your local new hospital that you went to can easily call and get you back into CC soon. Once you have proven yourself to SOMEONE in the medical profession, you have broken through all the defensive crap and you are on your way to getting help.

If the MOM does not work, call the CC GI on-call and see if you can drink 8 oz. of Colyte bowel prep every ten minutes. I promise you, after about glass number three or four, poop will come pouring out of you non-stop along with the camera (I hope!) BUT DO KEEP IN MIND I HAVE NO CLUE HOW THIS WOULD GO WITH SMALL INTESTINE HOOKED TO YOUR RECTUM, I HAD USE OF MY COLON WHEN I HAD TO USE THIS. SO BE SURE IT'S SAFE BY ASKING.

Now that you have medical people on your side, if you do get your small bowel manometry test and all is clear and they feel that just going back to the ileostomy will be best, then YOU get to INSIST on an expert stoma surgeon. You are small, young and in actually perfect health, (no diseased intestine) so creating a good stoma will be easy for someone adept at this. Too bad my doc stopped doing them or I'd fly you to Massachusetts. Do keep Lahey in mind; Peter Marcello, MD is fabulous and does soooo much laporoscopically.

If I were you, no matter what, I would forget about your job, focus on getting poop and camera out of you, get the small bowel manometry, and get yourself situated. You cannot help others if you do not help you first. THAT IS MY WEAKNESS TOO. AND that is how I got into all the trouble I got into. As I apparently had no surgical issue in 2006, that reviewers have found anyway other than a rectocele that retained no contrast, I think it was stress. I was caring for my mom, caring for my aunt, working FT, commuting 60 miles per day,and sleeping 5 hours per night. I think I just tightened my butt when I went to poop. AND look at all the trouble I got into!

I'm just glad to hear from you. You are being supportive of us; don't worry about that. You are now the one in need who we are supporting.

You keep going, girl, you did great today. Rosemary
Posted 12/20/2009 4:23 AM (GMT 0)
Lizzie,

I forgot to tell you Medical University of South Carolina has some amazing small bowel and stomach emtpying tests. I should have gone there for my original issue. They have it down pat as far as test availability goes.

As far as beating yourself up about having your first ileostomy reversed, don't bother. Remember our mantra, "We were making the best decision we could at the time based on the information we were given."

I am back on antidepressants because I've spent the last 2 years beating myself up over the original 2006 surgery. EVEN my atty who is suing 2 radiologists, 2 surgeons, and a hospital on my behalf is basically saying STOP IT! You were not responsible for the misinformation you were given. Being given misinformation removes a persons ability to make a rational choice as was my case. What's tripping me up and keeping me beating myself up is that I've learned so much anatomy since, but no lay person would know what I now know. I've done two years of full time research basically for something to do in between travels.

You, at least were given presumably correct information about your anismus resolving, and your stoma was made poorly, your skin was suffering, who wouldn't have done what you did? I can't think of anyone who would have done differently. I honestly don't think anyone really has a handle on the pelvic floor. There are too many nerves and muscles involved. I do think, however, that docs view going to an ostomy as a failure on their part (could be part of the issue with your doc at CC). However, it is not. When needed, then we do what we gotta do. Just like people with diseases do.

But take comfort, when you beat yourself up about your decision, I am doing the same thing to myself, miles away from you. Hopefully in time, we will each find peace. God Bless you girl, you're on your way to a cure. Rosemary
Posted 12/20/2009 4:39 AM (GMT 0)
Jen - woo hoo on the weight gain! I am gald you can keep food down, even if it's small meals. As far as the back pain, I did not have it at all with this surgery. However, it was the main source of my pain when I had my ileostomy surgery. My back felt like I had been hit my a truck! I remember thinking that I felt like I had back labor again. Does the heating pad help.  Personally, I would rather have the tummy pain than the back. I found it much harder to function with the back pain.  Eventually the pain will subside.  You're doing everything right..hang in there.

Lizzy - Wow., a half a bottle of MOM would make me puke! I am very proud of you for going to a new ER.  I know it is hard to get the courage to go to the hospital.  The experience is so exhausting. I am SUPER GLAD that they recommended that you stopped the test. I was talking to my hubby about you yesterday.  B/c he works as a medical malpratice attorney, I wanted to pick his brain about what you could do if anything bad happend to you while your doing this test.  I just think it is crazy for them to require this of you. And I am amazed that you have gone over 5 days without any laxatives. I am sure when they said they were "fascinated by your situation" they meant that as a complement.  My doctor once told me that he enjoyed seeing me because I force him to think.  Most patients need the same treatment. But for people like us, the typical treatments are not effective.  I saw my nephorologist yesterday. He said that I was a "hard case". I don't want to be a hard case...I just want to be normal! PS. DO NOT EVER FEEL BAD about VENTING! This forum is our venting outlet. It's what keep us from constantly over burdening our family. 

Marissa - Nice to hear from you.

Judy - I am glad you and your daughter had a nice visit.

Jenise - How are you today?  Thinking of you....

As for myself, my kidneys and bladder are fine.  The Dr thinks I have Barter's syndrome. He had me take a blood and urine to test yesterday and I will see him again after Christmas.  It may explain why I do not urinate. Now that I do not have a large intestines to absorb water, my body holds water like mad! The small intestines is supose to compensate but my does not (of course). 

Warm Regards,

Amey

 

Posted 12/20/2009 4:58 AM (GMT 0)
WOW so much to catch up on and so little time to read, must get to work, but will read all the posts when i'm home. Lizzie, the note they gave me said the labs will be ready only on the 27th, but i checked anyway and they're here. it seems most is normal except for low urea (which i know is good), low creatinine (0.5 mg where the norm is 0.51-0.95), cholesterol 204 mg, HDL cholesterol 60, non HDL cholesterol 144 mg, vit D 7 and in my urine check the PH is 5. the rest sais normal. i don't know anything about these things and what they mean, do any of you know? anyway, i'm gonna call that dr today and fax him these results and probabaly will start his treatment today/tomorrow, i nead to go to the health shop and buy all the stuff he told me to take, i want to do it today after work, so that i can start tomorrow morning. the weekend was awful :( i ate LOTS of sugarfree chocolate and it did turn everything into water, but very little came out. gosh.... i alowed myself to eat well, cuz i thought the chocolate will take care of it, but this time it didn't and i felt SOOOOO bad... it just feels like my rectum is shutting down more and more. even when the stools is watrey, i have to push the hardest i possibly can and even when i manage to make some out, it feels as if the passage is SOOO narrow, like almost shut and even water can barely pass :( during all of my yrs of constipation i NEVER got nautious, but yest i felf HORRIBLE, i got SOOOO nautious, felt the watery stools whirlpooling inside me but it didn't reach the rectum and made me feel very nautious, but not to the point i'd vomit yet. after many hrs a little came out and it was enough to make me feel better. i can't imagine how YOU feel, Lizzie, cuz i'm guessing what i felt yest is not nearly as bad as what you're going through with the vomiting and all. Lizzie, i have a question, when you had the ileostomy, did you still need MOM to soften the stools? i hope you're holding on Lizzie, i'm thinking of you and praying for you and for all of the rest of you always. i need to catch up on the rest of you later, heading for work, love you all dearly!
Posted 12/20/2009 4:29 PM (GMT 0)
Hi everyone,

Still doing pretty good, just more tired and a little more sore than I was in the hospital. I guess just being home and getting up more can do that! I have been sleeping GREAT at night... sleeping like 11 hours a night! I guess I'm playing catch-up.

I seem to be having 5-7 BM's a day.. just going small amounts, but after the months of reading here, that seems to be normal. My pre-surgery pain and bloating seems gone.. I so hope it stays this way!! I have been sticking to low residue, and having tried anything high in fiber.. I'm afraid to right now, as I don't want any hard stools.

Amey, how are you doing honey? Let us know how it goes today with Hospice. They are wonderful, and I'm sure they will help in the final days. It's so hard to lose someone.. and then to have MIL not even knowing what is going on.. must be so difficult. Hard to be jolly during the holidays with so much going on. So, how are you urinating? Do you have to self catheterize? Does the doctor have a treatment plan?

Hodaya, I'm praying for you that this new treatment is the cure for you! I'm glad your test results are back, and hopefully you can start today. I'm not sure what the blood tests results mean, wish I did!I find the softer my stool, the harder to get it out. I am realyy trying not to strain even the littlest bit - as I have had a rectopexy and rectocele repair along with the sub-total colectomy. I do not want to bust a stitch!

Judy, so nice of you to pop in! Are you planning a procedure for your stent this coming week? I think you may have mentioned it. If so, I wish you well and I sure ope your work issues are soon behind you!

Lizzie, after I had the impaction, and looked the symptoms up - they were what I had - minus the vomiting.. an impaction IS a bowel obstruction, and I know my bowels were not fully waking up because of it. If your rectum is not getting stool out and it is building - all your issues could very well be your Anismus.

Janie, oh gosh.. how I understand your excitement of not having Christmas at your house! My family is so large.. almost 40 people! It was prefect timing for my surgery, as I usually have Christmas.. and now it's at my brothers!! Just so happy too!! LOL

Rosemary, you're an expert at researching! I 'm sure you had to do so much for your lawsuit, and I sure hope in the end it stops those doctors careers. Man, it would feel wonderful to sail away on a cruise knowing that! Oh, and about my skin type and adhesion's, I have brown hair, but white as white skin, extremely fair - with light green eyes. I feel lucky not to have many.. also, my scars always heal so nice, doctors always comment on how nice they heal.

Jen, glad your gaining weight! I think with each pound you'll feel stronger and stronger! Next year you'll be a new women, and be able to sled with hubby and the kids.

Thinking of you all, have a nice Sunday!
Posted 12/20/2009 7:44 PM (GMT 0)
I just wanted to say I hope you all enjoy the holidays and that your health improves so you can enjoy life once again! I have been reading all of your posts since April '09 and they have helped me immensely! Rosemary and Amey; you two are amazing - you have been thru so much and yet you are so encouraging to others! I have read everyone's posts and I pray for all of you, I especially think alot about Lizzie and Jen and what they have been thru!

I guess I will admit it; I probably win the title of, 'the oldest woman on this site," me being 57 yr. old. I have quite a story to tell because all of my stomach pain and motility problems began when I was 20 years old! I have had about 7 surgeries (seriously I have lost count), my last being a sub-total colectomy in April 2009. Just in the last few days I feel I am doing better! I will write more later and tell what has worked and what hasn't but right now I am getting ready to go to Utah for the holidays (driving from California). Anyway, I just wanted to thank everyone for their posts - it has really helped to know there are others with the same issues and to know there is a place to go when I need help! Of course, I am always there for anyone with questions for me also. Hey do any of you live in San Diego?

Thanks,
Gilda
Posted 12/20/2009 8:34 PM (GMT 0)

Quick Update:

Well its now been over 26 hors since I went to the ER yesterday. I have taken 3/4 of a bottle of MOM and I feel horribly weak, but I have had a lot of relief. My belly has decreased in firmness and distension and appears a lot better. I just wish having to take so many laxatives to have relief would not leave me feeling so weak. I feel like I cannot even barely move today. I am drinking some electrolyte drink to get my fluids back. I have emailed my surgeon here and have nt heard back from him yet. The ER yesterday wanted me to see him within 2 days, so that would be tomorrow. I will also be calling FL tomorrow as I do not know how long I can go on like this.....I am definately better, but I cannot take this amount of laxatives and be ok forever.

Amey- I am thinking of you today as you are having such an emotionally exhausting day. I hope God has given you the stregth today you deserve. Its so hard, but hospice is wonderful and I hope they take care of you and your family. Keep us posted. Thinking of you always....

I am thinking of all of you and promise I will catch up on posts. Gilda, Hodaya, janie, Christy, Tracy, Judy, and Rosemary...you all are so wonderful and I hope you all have a wonderful holiday season. Have blessed time with family and safe travels. I will write more later. Love you all.

Lizzie

Posted 12/20/2009 10:23 PM (GMT 0)
Rosemary,

when I did the small bowel manometry I was very weak two, had barely eaten for about three years. And I was in so much pain and had severe! constipation. I though I couldn't stand all the tests I had to undergo. But it was the best decision I could take to force myself no matter what woud happen. I was very afraid of these tests too sine I had a partial small bowel obstruction three days before I was supposed to fly to Italy.
Posted 12/20/2009 10:35 PM (GMT 0)
Lizzie,

when my x-rays were taken I also had dilated bowel loops with air-fluid levels which is usually a sign of (small) bowel obstruction, but it's not a menchanic obstruction (like it would be with adhesions etc) but a paralytic ileus! It is the impaired transit that causes a clinical picture that resembles a mechanic obstruction. So this is called pseudo-obstruction.

My rectum was/is like yours and for sure it can cause severe motility problems proximally if it causes pseudoobstructions. If it is not just the rectum but also the small bowel is impaired then you definitely have intestinal pseudoobstruction like myself

http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/index.htm
Posted 12/20/2009 10:40 PM (GMT 0)
http://www.aboutkidsgi.org/site/about-gi-health-in-kids/functional-gi-and-motility-disorders/intestinal-pseudo-obstruction

descirption for children but it is nearly the same in adults regarding symptoms.
Posted 12/20/2009 11:01 PM (GMT 0)
Lizzie,

Glad you got relief after 3/4 bottle of MOM! Thank God. But yeah, you can't keep doing that. I think what is happening is you are having to blast small bowel liquidy poop through the anismus (acute angling) of you rectum which is what happens when the puborectalis (sling muscle that controls rectal angulation) does not function for whatever reason. Yours likely some nerve/muscle issue, mine was scarred in position. But whatever the case, I think the huge amounts of laxatives builds a propulsive force that overcomes the acute angling of the rectum so poop has no choice to come out. I had to take the equivalent of 66 bowel preps over 13 months due to the lower colon scarring and scarred right angled rectum until I could PROVE that that part of my body no longer worked due to the 2006 surgery. I remember literally passing out at the end of a day that I did those "preps" just to move my bowels. That is when I developed all the lightheadedness, that strangely enough lingers even today, to a small degree.

So get on those docs tomorrow to still take action. Tell them that you are literally having to build up a propulsive force with all that laxative to overcome the right angled rectum and that you cannot and will not live like this. Then say "When are you scheduling my small bowel manometry?" (Not "Can I have a small bowel manometry?") See what reaction you get. They can schedule it at facilities other than their own. Hospitals share these technical tests.

I had the use of my colon when I had to do all these bowel preps to move stool through the scarred portion so I had absorptive capacities to maintain some electrolytes as the colon is what draws those and water back into the body. But you without your colon just working with your small intestine, you could get severely dehydrated and have severe electrolyte imbalance. Remind these docs you don't have your colon. I bet they're getting lost! My ileostomy surgeon and stoma nurse told me with an ileostomy (NEVER take a laxative.) So I am basically in the same boat you are except I just go into the bag. So be sure these docs realize you are HAVING to do something dangerous in order to move stool out of your rectum.

Gilda,

Glad I could be a fountain of information. I feel like it is information I gained way to late in the game. That's why all my self blame for having the 2006 surgery, it's hard to think back to a time when I did not have all this information. But nobody would. Glad you like the forum. The ones "doing this" are the real experts.

Glad everyone is doing pretty well. It's super cold tonight but am going to a luminaria celebration. Gotta tog. Have a good week everyone, Rosemary
Posted 12/21/2009 6:47 PM (GMT 0)
Lizzie, sorry you couldn't make it through the 5 days, but glad you went to that ER and had some relief. you're right, you/we can't go on taking so much laxatives forever. you feel you're ready for a perm ileostomy? did you still have to take MOM while you had the loop ileo? im just wondering whether an ileo would be a solution for me too, but if by eating either a small potato/few bites of pasta/a slice of bread/few bites of rice my stools is really formed and hard to pass, maybe i'd still need a stool softner, even with the bag? cuz maybe my smalls are also slow? Jenise, thanks so much for your prayers honey! you're really sweet. this dr wants me to order the supplements on-line and it's an american site and i need a visa card in order to buy anything and i don't have one.. maybe i'll ask my sis in san diago to get it for me, and send it to israel.. gosh, why does everything have to be so complicated...?? im just so tired :( sorry for being so depressed. Marisa, i'm so glad your procedure went well and everything is o.k with you small bowels and NO crohns!! that's really good to know. i hope things improves for you from now on and no more bleeding. Rosemary and Sarah, WOW what an amazing research you've done for Lizzie! you've provided a whealth of info for Lizzie and anyone else who checks in here in the future and might need it. GOOD WORK!! i'm barely going to the b/r in the last few days, even though i ate LOTS of sugar free chocolate. i look 5 mons pregnant and i'm barely eating! i'm tired of crying so i just turned apathetic, which is also not so good, cuz it means i'm letting depression get me, oh but not really, i'm bouncing back, going to work, laughing and smiling as much as possible to every one, but it's hard while not being able to eat anything all day at work in order to feel well enough. i enjoy being at work, forgetting about everything, have some good laughs with everyone.. but i'm also very weak from not eating anything all day. it's been a looong day and i'm really tired, am i making any sense to any of you...????
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