Total Colectomy Part 35

Well I'm feeling better today. I was able to walk around the ward 4 times. The pain was gas pain which I still get but its starting to get where I just feel it come out (which still weirds me out lol).
Eating still causes my stomach to freakout and cramp.
Coughing is a pain. Stupid allergies. Let's see...sleeping in a hospital bed sucks. Hospital food sucks. Today was the first day I laughed. Watched a movie on tv and laughed so hard that my stomach hurts.
Friday was the worst day as the medicine from the surgery wore off and I had bad headaches and nausea all day.
Dunno if ill get out tomorrow so woo.

Lori, much love to you sweetie and best of luck! i'm so happy for you and i agree, the ileostomy has to be a lot better than the way you are now. will be thinking and praying for you! barb, i'm so glad your manometry and defecography are normal, that gives you better chances to have a successful outcome. thank you for the well wishes!

Answers4me2: Yes, it makes me hopeful that my tests came back normal....except for the possible rectocele....but I guess we;ll have to see what come sof that with the nex exam. I will let you know.
I am not sure if I ever had a barium enema...the ones the docs tell me to take before many of the procedure is the fleet enemas. I never look forward to it because they do not seem to work. Most of the watr/fluid comes out, and rarely any bowel with it....I always seem to have excess fluid/water from the enema. **it is hard to explain... but when i push on my tummy I can hear it sloshing around inside, so I know it is still there.
When I used laxatives to push things through (usually on a friday or saturday) I will normally have a bowel movement the next day - but it is never solid - it is just mush. (So gross).
When I do not use laxatives and I do have some sort of bowel movement, they have been small and lumpy or long, thin, and stringy. Never enough to be a full bowel movement, so I continue to feel backed up.
My stomach is bloated from top to bottom, right under my chest line and right about the pelvic area.
Every morning I wake up early to try and have a release before work, because something is better than nothing...and ill usually feel a little better if I pass something. I do stomach massages along the intestines to try and push things towards my rectum. Sometimes when I breathe I can feel the fluidy bowel on the left side of my tummy - move up and down and you can hear it like clogged drains....bubbly and fluidy sounds. I am guessing it is loose bowel ??
I have not had children yet...unfortunately. I would liket o some day hopefully, and hope that this issue or the surgery will not effect that. On a side note, the docs also discovered that I get hemmoragic (sp?) ovarian cysts from my CT Scans. They seem to grow for about 6 months and then burst. Very painful, but it is weirdly a "good" thing because they do not grow larger. They get to be about 3.5cm. My hospital will not do anything for them until they reach to at least 5 cm.
So life has been a bit out of wake for my 30's so far. I want to be healthy so badly. I really am hopeful and pray for a "new start" and a "Second chance".

Thanks for the reply and I hope to KIT with you and the others.

Barbeezee

Barb, ok, I understand now. I have the same exact issue.

My intestines will have fluid places in it and it makes me VERYYYYYYY nauseas....I can't stand that fluid sloshing around inside of me. Even my husband can hear it sloshing around. He said it sounds like I am going to have a massive blow out any second, but sadly, that day never comes.

I seem to do ok with taking miralax, but I can't over-do on the miralax either. That will only produce some brown water, totally bypassing the poop in my colon, which leads to a ton of hard or very thick poop getting stuck....this type of poop is to be avoided at all costs because it will take hours and hours to get out of me....UGH I hate that! I am talking 6 to 12 hours everyday if I don't stay on top of it. I take 2 to 6 doses of miralax everyday, but always skip a day or two every week due to obligations....I spend 3 to 6 hours everyday on the toilet, but if I don't take miralax, then I will not have a bm and this does come in handy if I have alot to do on a particular day.

I can actually go several weeks with no bm, but when I do have to start having bm's again, I have horrific rectal spasms when trying to get the ton of poop that has built up in my colon, out. This pain is not worth postponing bm's!!!!!

As far as constipation, I have been constipated as long as I can remember, but the outlet issue came after my hysterectomy. So, in my opinion, the outlet issue is my main complaint due to the severity of it. I may still have to have a total colectomy, but I am not ready to have my colon yanked when so much more is wrong than just the colonic inertia. Sounds like you are a good candidate for the total colectomy seeing as it seems like you don't have outlet issues.

Newshinycd, great news. You are doing well then. Is the stoma producing now? Just take it easy on food and you will be ok. No need to rush to eat....you have plenty time to eat in the coming months with your new plumbing, minus your nasty ole colon. I bet you are glad to be rid of that!

Hodaya, hello. Call me sometime. I am off work for the summer!

Rosemary, still mind boggling about the small intestine being sent to the lab, but no sigmoid colon. I can't seem to wrap my brain around the many, many errors they made with you. Girl, you are lucky to be alive! I did drink some water today, but it still hurt my poor tongue. Hoping the medicine kicks in better tomorrow and this nasty thrush goes away. YUCK

I have a question for you gals that have had surgery already. My doctor has me taking a prep, moviprep, in preparation for my surgery...on the day of the prep, he has me also taking potassium pills....2 at 2pm, 2 at 4pm, and 2 at 6pm, these are not the actual times, but something like that. What is the purpose of that and will it make me throw up taking those pills on an empty stomach? Just curious?????

Get to go home today. Just have to pee on my own.
They took out the jp drain and the catheter which was the weirdest thing I have ever felt.
Doctor said that the abdominal cramping is normal. He said that it will go away as I walk more and as my body gets used to foods again.

Shiny,

All is normal that you describe so far. Keep walking and the gas should resolve. Keep up the slow cautious eating. Rosemary

Snuggle, Yeah ignored telephone appointments with docs are typical and irritating. I found good ones maybe 2 out of 11 that tried to help me out of my mess.

I spoke direct to a great radiology doc at Lahey. He said likely I do have some sort of adhesion that trapped mashed potato and high fat cottage cheese. He recommended a CT scan with some non barium syrup to drink as contrast. With CT it's 3 dimensional scan so you don't have to deal with bowel stacked up on eachother and push it around while doing the test. He said further surgery would only beget further scarring, so if I can taylor my food intake to get nutrients and avoid food blockages that would be the way to go. I have only had 3 food blockages in 3 years and if I stay away from those heavy foods, then so far so good.

So I think I'll contact my surgeon about the CT scan with the syrup and just see if anything obvious shows. I've had no actual small bowel adhesion obstructions so that is the main thing. So hopefully all will be well and I can just get off on my next cruise.

By the way, do any of you know that on the natural, unoperated on body there is a protective coating called peritoneum? It's like a cellophane wrap around the organs with some fluid inside it that lets organs slide about naturally on eachother. Once surgery is done then this is disturbed and adhesions form as the body tries to repair itself. Some adhesions are not symptomatic and some induce pain or small bowel obstruction or food obstruction. Wouldn't it make sense to have all this info on surgical consent forms when people have ELECTIVE surgeries?

Rosemary

Snuggle, UGGGG! I know you are so pissed! Be sure to fax the test results AGAIN! I had one doctor order a test....never got the test results from his sorry butt.....went to see another doctor and he wanted the test results....so, I went to the doctor who ordered the test and sat in his office forever while they scrambled to go find the test result.....well, they couldn't find it, so I left empty handed. I went straight to the hospital and got the test result from them....when I got home, there was a message on my answering machine that said, "Dr. Armstrong remembers your case and you very clearly and he said he did not order the anal manometry for you, that he rarely has a patient do an anal manometry test, that it was a defogram and I had the test names mixed up!" I was like, WHAT? I have the anal manometry test results in my hand with his name as ordering physician and my name as the patient. INCOMPETENT! And to think he wanted to do a total colectomy on me without all of the test results!

Hi Rosemary, I really appreciate you taking the time to write! You always have very good suggestions and are very clear in your explanations (I think you should become a doctor or do something in the medical field). I may end up getting the tests you suggested; I am pretty sure that I do have fast small bowel transit; hence the diarrhea. I do try to control this problem with diet, Lomotil and Percocet or Vicodin (Narcotic drugs are constipating). These drugs work but I hate to be getting all of that daily acetaminophen plus sometimes they work too well and then i have to deal with the pain of constipation of I get SIBO (small intestine bacterial overgrowth). I think when I slow my system down too much; stool is actually formed in my small intestine and this isn't natural (I think you are supposed to just have "liquid food" in the small intestine and stool forms in the colon (which I am without). This question may be weird but can you tell me: the stuff that accumulates in an ostomy bag; does it look like soft stool? I think maybe I shouldn't be living on so much Lomotil and Vicodin; sometimes now I get heartburn and I certainly never feel like eating (I am only consuming about 700 calories/day). Do you have an appetite? Did they take your ileo-cecal valve? Please answer these questions when you get the chance. Thank you so much for your time and, once again, I am sorry you are having to deal with so much in your life right now. I am glad you are looking forward to another cruise. It is true; we do need to do things other than just focus on our health issues.

Thanks,
Gilda

Hi Gilda,

For lunch today I had a cheese sandwich and some tomato soup. When it came out it was as thick as soft formed stool into the bag. So this is not that different than what you output on the meds you use. When I have too much sugar and actually have diarrhea, I take one Lomotil and the stuff can be like concrete until the Lomotil wears off. Again, not that much different than what you describe.

I agree that you should not be living on all those drugs, though I see the reasoning behind your taking them. I think you can thicken more with food. I don't know how you are upright on a Vicodan. I would be collapsed in a heap; that to me is a knock out drug. But we are all different.

I am never hungry, but eat for nutrients. I did look up the absence of ileocecal valve you mentioned, but could not find anything about that having to do with hunger control center. I have been taking valium for sleep for ages and am going to wean off and hope that will bring my appetite back. Your lack of appetite can be from the Vicodan. Any pain killer or calmer downer downs every sensation including the hunger sensation.

You also need a stool culture for lactobacillis as without it, you can get the runs. I had my effluent cultured and I had no lactobasillis to my name. Now I take two pills of it per day. My naturopath has been my life saver in terms of dealing with the side effects of this whole mess.

Thanks for understanding my situation too. Will be happy to answer any more questions on line. It's just so much faster and easier to do.

Off to dance class. Cha, cha, cha, Rosemary P.S. This is my gift to me for today. Every day I'm going to give myself a gift of diversion.

Answers4me2:

Thank you for your replies, it make sme feel better to know someone is out there listening and supporting.

Can you explain to me what youre issues are? (if you dont mind). You have Colonic inertia, and you do not want to have your large intestines removed? The fluid retention is pretty unbareable. Especially when you can feel it moving back and forth - up and down during the day. Every time I eat my intestines make funny noises and the bubbly clogged drained feelings. Like it is just getting more stuffed and making room for the new bowel. :S

You do have an appointment for surgery though correct? Can you explain what that will involve? I hope for the best for you, I truely do. All this intestinal issue stuff really bogs my mind...its almost surreal even though I live with it. Very hard to comprehend how this happens to us.

Everyone:

I spoke with the surgeon today, and he talked to me about my pre-op appointment tomorrow and the possible 2cm rectocele issue. It is so frustrating, and I think he knows it now. He explained to me again that this surgery is highly controversal and that medically colonic inertia is a phenomenon and doctors do not even understand why it happens - or if the surgery will fix the issue for sure....it definitely scares me, but I feel like it would be better than living like this.

I have been through so many tests and the only thing that shows that my rectum may not be working at 100% was that it took me 2 pushes to get out the contrast during the defactogram exam. I am not the doctor, so I do not know - but I do not feel like the issue is my rectum. I can release when it gets to that point, but it takes so long to get there. My stomach (like today) gets big and bloated and full. I feel so heavy. I know I should be going to the restroom, but it feels all stuck in my intestines, not in my rectum. Its hard to explain, but that is the best I can tell. I explained this to the surgeon and that I am mentally ready for the total colectomy. I know it may sound silly, but I hate my intestines...I just want them out. But...he is adiment that I go forward with the consultation with the GYN for the possible rectocele. I got my appointment scheduled today - the best they can do is June 18th. My surgery is scheduled for June 24th! I feel beside myself, trying not to stress out, trying to make the best decision, trying to understand how to move forward. My surgeon made it sound like he did not want to go forward with the pre-op because I will have to do it again, if I do not have the surgery within 30 days of the pre-op. I told him, that I wanted to move forward anyways, because at this point the surgery is what I want.

For those of you with pelvic floor dysfuntion and/or rectum issues - how do you feel when you try to go to the restroom? What type of remedies or manuevers help you have a release. Can you tell that you have an issue with your pelvic floor or rectum, and how can you tell?

I appreciate all the responses, I really do. It will help me in my decisions on how to move forward and how to determine my own issues.

Thank you so much. Positive thinking!! (trying my best)

Barb

Barb, hello again. My outlet problem is severe and life altering. I can not push down to poop. When I took my 1st defogram 2 years ago, I could only push out some of the barium, and this was with repeated tries and much straining. My defogram a couple of months ago, I pushed with all my might, until I thought my head would blow off, and NONE of the barium would come out. Not one drop.

I was then diagnosed with rectal intussusception, which is where the rectum slides into itself, causing a mechanical blockage, anismus, which is the puborectalis muscle does not relax, and a rectocele. Today I went to see my primary GP and I read the letter my colorectal doc sent him and it said the rectal intussusception was SEVERE! So glad I found this doctor who finally diagnosed me with this condition.

My surgeon is going to remove the intussuscepted part of my rectum, remove my sigmoid colon, perform a rectopexy, and then hook me up to a temporary loop ileostomy to let the rectum heal, but mainly to give the puborectalis muscle time to rest and hopefully relax. This is experimental and I have a 75% chance that it will not work and will eventually have to get a permanent ileostomy.

I think these issues come from a combination of me having big babies. having 2 rectal surgeries for hemorrhoids and a nonhealing anal fissure, constipation my entire life, having a hysterectomy with pelvic prolapse repairs, then turning around 1 year later to have another pelvic prolapse surgery that was supposed to fix the outlet issue, but, instead made it that much worse.

I am choosing to keep my colon at this time because I am scared to have anymore parts of my insides removed. I would rather be able to go back to the way that I am now, just in case the other way is unbearable. I do not want nor do I think I can live with being worse than I am now.

So, I have chosen to go this route because like your doctor said, removing the colon is irreversible and can never be replaced. I figured, I can always go in for another surgery to have the colon removed at a later date if the ileostomy is bearable and I don't suffer too many issues with too much output, dehydration, etc.

On the plus side, my doctor is performing my surgery laproscopically which cuts down on adhesions. At one point, I considered having the colon and rectum removed and getting the BCIR, which is an internal ilestomy....but, I quickly changed my mind about this because it is permanent and I want to try this temporary ileostomy 1st before making any decisions like that. Sorry for rambling, just want you to understand my reasoning....LOL

I truly don't think you having to push 2 times with your defogram is significant of anything being wrong with your rectum. How long did it take you to empty? Was it less than 60 seconds? I truly think you sound like the ideal person to have a total colectomy since you don't have issues with your rectum. Did you say you had the anal manometry? If so, what were the results of that? One of the doctors thought I had hirsprungs disease, but the anal manometry showed I did not!


I know this is long and my story is very complicated and I could go on and on for hours! LOL If you ever want to talk on the phone or whatever, just email me and I will send you my phone number. I am off work for the summer!

Happy Tuesday to you all!   Update on Lizzie:   Sunday, June 6 - A huge praise, in the form of Dr. Corey Waller, met with Lizzie. He was the attending that afternoon, and he had more ideas as to why Lizzie has such huge complications after every procedure than anyone else ever has. He sat with her for over 30 minutes, and he feels like her complications are immunologic in origin. He is very familiar with the K-pouch surgery, and he has some fantastic ideas as to what to do for her! He is opening a clinic in the area, so hopefully she will be able to get some help there very soon! Although no immediate cures came from this meeting, it was a huge boost!   Monday, June 7 - This morning, Lizzie's labs tanked. Even though she has been taking in calories, nutrients are not being absorbed, and she has about three liters of output a day from her tube alone. She really needs to be put on TPN (nutrients are delivered directly to the bloodstream), but instead they changed her diet to a milk and high protein shake that is so rich that it makes her sick. Because of that, she is now getting fewer calories than she was before. She has followed everyone's orders perfectly, and is so frustrated that this suffering continues. She misses life so much, but despite feeling weak and having a lot of pain, she is still trying her hardest to hold on!!   Pray for her appointment on Wednesday, June 9 at 3 PM (Ohio time) with her surgeon in Cleveland. She is going to take copies of all her lab results with her, so pray that the team at Cleveland would take one look at her and those labs, and immediately admit her and start TPN. I know it may seem odd to pray for someone to be admitted to the hospital, but Lizzie needs it!! Pray that she would not have to fight the doctors, and that they would keep her for as long as it takes to figure out what is going on, once and for all! As it stands now, her surgeon still plans on removing the tube at this appointment. That may change, as the healing of her internal valve may have been greatly hindered due to her nutritional state. Pray for wisdom for her doctors.   Thank you so much!!! If there is anything you would like to share with Lizzie, I'm happy to pass it along.   Love to you all!   Allie  

Barb, yes, the total colectomy is MAJOR, but there are no other alternatives for people like us with colonic inertia. When you have exhausted the use of laxatives and nothing else is working, then the last step is a total colectomy. If you go to the top and search total colectomy part 1, part 2, part, 3, etc. then you can go back and read about many women that have had total colectomies and are doing wonderfully. They don't even post here anymore because they are back living their lives. Judy, who still posts here is one of the success stories and is totally normal after her total colectomy.
I know it is scary because the people that are posting here are having issues, but overall if you go back and read, there are more success stories than not. I read several articles about total colectomies and I believe the people who had total colectomies were 87% happy with their decision or maybe even more that. Those are pretty good odds if you ask me.

As far as my rectecele, it was not measured....it only said a significant rectecele???? Did you see your defogram? Because I have pics of mine.....Here is a link if you want to go see them...the curvy one is when I was pushing and nothing would come out.

http://www.flickr.com/photos/answers4me2/?find=paralyzedcolon%40yahoo.com

Lizzie, hoping you have found a doctor that can help you...praying for you!

Tracy