TOTAL COLECTOMY PART 31

esoR said...
Lizzie,

Great summary of tests for Tracy.

Tracy, Glad your docs are being thorough.

Jenise, Thanks for scoop on your defecograms.  The radiologists just had me drink water to opacify the small intestine and ultrasound gel to opacify the rectum.  This was not the normal xray defecogram; it was an MRI upright magnet defecogram.  To my knowledge they did not give me enough ultrasound gel rectally to get into the sigmoid.  Therefore what descended HAD to be small intestine.  GOTTA convince my atty of this when I return.  I am allergic to barium so had to have this alternate way of doing defecogram BUT this is what got me inworse trouble than having an allergic reaction to barium.  Just can't win.

Today was super beautiful at Tayana Beach in Honduras.  Like about 80 degrees.  All these natives have totally natural unspoiled bodies, made me envious.  I thought to the day when Lizzie could be on this beach swimming away with her ileostomy bag tucked nicely into her ostomy bathing suit.  I pictured her beautiful on this beach.  Hope that comes to pass.

Hang in there Lizzie, if my case does not make medical history yours sure will.  Your story is even worse than mine.  I cherish those 20 years I had between your age and mine when I fell into trouble.  Take care, honey.  I'm old enough to be your mother.  Your case breaks my heart.  Glad your mom is getting proactive  If your local news paper could only get ahold of your story, maybe some publicity would not hurt and would speed things up with the insurance.  One never knows. 

Rosemary

Hodaya, that is very sweet of you. I am just going to give it a little longer and see what happens. As long as I really watch my diet I can get by. Its just all the testing is so hard on me. There are so many! I dont want to start that again. How are you doing? Any better? If I dont take laxatives at night I really dont go as much as I think I should. So, I dont know, definetly better than I was preop, but you just have a whole different set of issues.

Gilda, Thank you for your encouragment. That is great to know how you are feeling. I think someday I will get there. Its just going to take time.

Hope you all have a great week! Stay out of trouble!!

Hello everyone,

It still amazes me that those of us with no colons still have trouble going. It is really discouraging.

Marissa, what laxative are you taking at night? I still have to take miralax twice a day or I'm miserable. If I eat like I know i should, things work pretty well doing that. If, like today I'm an idiot and eat chips and coconut pie and everything else I could get my hands on, then I'm pretty miserable. Even with the miralax, things slow down so much if I'm not careful. I can definitely eat more than without it....without it I was always miserable, but it's still difficult. I wasn't sure what to expect but I didn't think constipation would still be an issue. Luckily I don't have the naseau, but my surgeon told me that was often a side effect of the surgery; I'mnot sure why though.

Hodaya honey, I wish you'd try miralax. I totally understand you don't want to take laxatives again, but if you're able to go, even a little without it, you most likely wouldn't need to take it more than once a day. It might just be what you need to give you a little boost. You asked me if it worked like prune juice....no, it took about 3 days before it kicked in, but the thing with miralax is that once it's in your system it seems to continue to work longer than prune juice did for me. With prune juice, I would get a really sore rear, too. Miralax just works better for me, and I just pray it always does! Without it, I think I'd end up with an ileostomy. I may still, but for now it's manageable except for days like today, whcih is totally my fault.

Judy,
I'm so sorry about your daughter. I can only imagine how you feel not being able to be with her now. I hope she's not in alot of pain and that she has a complete recovery. We miss you around here!

Lizzie,

I hope you get some good news tomorrow. I'll be thinking of you! I'm so glad you have your mom helping you. As a mom I know she must be worried sick about you.

Rosemay,
Hope you're having a wonderful time. We finally hae some nice weather in Florida, but I'd sdtill rather be on a cruise!

Gilda,
I'm sorry you're having problems with diarrhea. The first 3 months after surgery I was pretty much that way, and even now I go about 10-12 times a day, but I have to take miralax and it's always just a little at a time. It's still difficult to figure out when I can and can't eat if I'm going to be away from home. If I don't take miralax, the stool just gets to my rectum and sits and I'm miserable. Did your doctor think things will slow down after awhile?

Everyone else,
Hope your weekend was good and that you're doing well.

Janie

Lizzie,

hope you get good news today and that plans are set into action.

Anyone, who has trouble "going" try some sorbitol, that was what was in those fake sugar cookies I tanlged with a few days back.  Immodium made it possible for me to get on my side trip.

Crossing Panama canal today.  Rosemary

Hodaya,
I'm not sure if it will work like that or not. Maybe if you start taking it for a couple days until it kicks in, you will be able to only take it occasionally once your body gets it in its system. Anyone else know? I haven't taken prune juice for a couple months, so I'm not sure if it would work or not now. Miralax is much easier for me to swallow, too. I hated the taste of prune juice.

Lizzie,
Hoping you get good answers today and that you're getting together a plan to finally be on your way to feeling better.

Janie

Lizzie,  Post when you can.  and when you hear.  Worried about you from Panama.  Rosemary

Good Luck, Lizzie. Rosemary

Hodaya, I have experimented with miralax alot. You just need to take a dose a day until you notice that it is working and to build it up in your system....then you can decrease to 1 or 2 doses a week and it should work. Especially with you having no colon!

I posted this long post and lost it! GRRRR

Lizzie, I am so happy for you that your insurance company has at least agreed upon your going out of network and Cleveland Clinic.  I hope that you finally will get the care and understanding that you need.  How many hours are you away from Cleveland Clinic?  Maybe they will medivac you, if necessary.

I had my upper gi small bowel follow-thru today.  I had to be at the hospital at 8:30 this morning.  The radiologist wanted to put a tube down my nose, but I started crying.  I had to have a nasogastric tube last summer and it was horrible.  Anyhow, he ended up letting me drink the barium, instead of it going thru a tube and having an i.v.  Luckily, my husband went with me.  We had pictures taken every half hour and didn't leave the hospital until 1:30 this afternoon.  Tonite, I feel worn out.

answers4meTDR, I have my colon out too, like Hodaya.  I had a total colectomy, but it stopped working.  First, I tried prune juice, then miralax, and finally milk of magnesia.  Nothing worked and that is how I got in the predicament that I'm in now.  I had to have an ileostomy, but it didn't start working, I had emergency surgery, and now have a tube from my small intestine leading to a leg bag velcroed to me.  I am in the process of having tests done every 2 weeks to see if my small intestine has healed enough to have surgery again in June.

Rosemary, I love cruising.  I hope that you're having the time of your life and enjoying everything.  My husband and I went to Cozmel in October.  I could hardly walk (recovering from surgery), but I loved being able to soak up the sun after being in the hospital for 52 days!  Florida is supposed to be a whopping 69 degrees tomorrow.  I hope that your weather is a bit warmer and sunny.  Also, I really hope that you're able to eat all of the delicious food.  I had just gotten off my feeding tube and wasn't eating much yet, but I still tried nibbles.

Hodaya, I hope that miralax will work for you.  I feel badly for you, because I feel what you're going through.  My colectomy worked for almost 2 years, but you haven't even had the blessing of your colectomy working on its own.  I can remember your posts pre-surgery, and it seems like you're still having problems finding relief.   I hope that you don't have to have an ileostomy, but if so, they're not so bad.  At first, I was devastated and thought it was the worst thing in the world, but now it's all I want.  I want to be healthy again and therefore, an ileostomy is everything that I want.  Dr. Wexner at Cleveland Clinic in Florida has said that my surgery is going to be very difficult.  I cry alot and am terrified, but there's nothing I can do.  I have to put my trust in my doctor and pray for the best.

Love you all very much,
butterfly

answers4meTDR, my first ileostomy surgery was in May 2009 and my small intestines were fine; however, my ileostomy didn't start putting out waste material.  Twelve days later, I had emergency surgery and my small intestines were so inflamed, my surgeon called 3 other surgeons in and they collectively decided that my leg bag was the only way to go.  My surgeon said that my small intestines looked like a block of cement with hoses sticking out everywhere.  They were badly inflamed and caused me to have fistulas and 3 jp drain tubes.

I can eat with my leg bag, but the tube is small and becomes obstructed easily.  My husband and I flush it out with a syringe of water daily and sometimes more if things get stuck.  I can not eat alot of things.  For instance, spaghetti sauce with pieces of tomatoes get stuck.  I have problems with all meats other than chicken and turkey that are really tender.  I have to chew, chew, and chew.  I cannot have blueberry bagels.  The blueberries swell up and turn hard and get stuck.  Nothing with peels.  I can eat steamed squash without peels, potatoes, and sweet potatoes without peels.  Egg whites don't dissolve well, but yolks are alright for some reason.  Shredded pork is a no no, too.  Fruits for me, almost don't exist.  I can have banannas, mandarin oranges, and applesauce. 

Do you know if your rectal problem has anything to do with your anal sphincter?  That was the problem that the doctors found with me when they decided I had colonic inertia.  I was so constipated and my smooth muscles wouldn't relax.  My rectal area would just close up on its own and nothing could come out.  I had botox injections there before my colectomy, but they are very painful and expensive.  Each injection is $3,000 to $5,000 each and I had 2.  My insurance decided to cover them at the last moment.

butterfly

Jen,

Sorry you are back in hospital. With sm. bowel motility issue isn't gastrograffin the choice contrast given through an ng tube? Concretized barium in small bowel can really cause an issue. Poor Jen. God bless her. Rosemary

Lori,
I'm sure you've said before, but do the doctors know why you stopped going to the bathroom after the colectomy being a success for so long? Did you definitely have colon inertia as well as the rectal problems before your first surgery? Why do you think the rectum worked for awhile after surgery? I'm just so confused by all these colon and rectal issues. I sincerely hope you'll be able to have your surgery in June.

Jen,
I'm so sorry you're going back in the hospital. I hope you can get some answers and be able to go home. It must be so difficult being away from your family:(

Janie

Butterfly, I am hopng with these next 4 tests that they may have some answers for me about what the problem with my rectum is. I can definately feel that it totally shuts closed though. I have to insert suppositories, 3 to 4 at a time so that I can kind-of stack them like building blocks and then still have to manually hold the rectum open. Even water from an enema has to be released with suppositories and me holding the rectum open. And sometimes the water just disappears and never comes back out. Am I WEIRD or what? I had botox and it did absolutely nothing to help with the rectal problem. I had a defecogram and it said some degree of anismus, pelvic floor descent with incomplete evacuation of contrast, which is an understatement because I don't think even 10% of it came out and this was after repeated straining! So they bascally have no idea why I can't empty my rectum????