Total Colectomy Part 34

Jenise, thanks dear, yeah, when i have children, i will go only with the c section, not the other way. Tracy, i saw my surgoen Monday to ask about an ileostomy surgery. i asked about the j pouch as well, but he said that they don't perform a j pouch on ppl like us (as we already know) and that a j pouch is involved with so many complications, like pouchitis. perforation and all kind of things that grow in there.... really made me feel like droping the whole idea. well, it didn't hurt to just ask. i never thought anyone can be constipated in the bladdre too, gosh that's aweful. Sarah, thanks so much for your explanation and advice! yes you've explained it to me very clear, and it's exactly how i feel, but i just hope my small intestines are not slow. i just wonder how come miralax is doing nothin for me and pear juice does?? so i'm gonna have a scope soon to see the anastomosis, they havn't scheduled me yet, i'm waiting for their call, i hope i don't have to wait so long, cause really, i want to have the bag as soon as posible. Janie, Marisa and everyone else.. miss you all.

Hi Hodaya,

So did your doc say that he was in favor of the ileostomy and saw it as appropriate for you pending results of the scope test? Rosemary

answers4me2
  since you had a total colectomy can you help me ???  I just posted a new thread asking for help..

Leslie

Janiepain
  He made a J-pouch inside it is supposta be kind of like a little colon, a place for stool.  Its very small because when stool gets in there you have to go immediately...  I guess I have too much air in my small intestine...

Leslie

Leslie, i think it's too early for you to eat salads, i tried a small salad when i was 2 mons post op and it made me so constipated and i was in so much pain. put yourself on a liquid diet for couple days, that should clear it, unless the pain is too intense, then in that case you should def call your dr or go to the er. hope you feel better soon. Rosemary, thanks so much for the update on Lizzie! how could it be possible to release her already??? it doesn't sound like she can go home at this point. yes my dr told me that 3 mons ago that we should try to have a temp ileostomy and see how i manage. it will be an end ileo, not a loop, the rectum will still be there and if i end up worse and hating it, he can always reconnect me. just yesterday i talked to a friend who was in the hospital with me, she's had the ileostomy for about a yr. she really encouraged me about how it's not the end of the world and that i can do anything with a bag etc. she really made me feel better about it. last night i've noticed i have a bit edema.. :( and i'm not sure why?? i drink about 3 litter a day, maybe i'm not peeing enough? maybe my body just holds the fruids? LOL Janie, maybe i should also try that trick with the leg..... :D Rosemary, you're so wonderful helping and giving such great support to everyone, but how are YOU doing? love you all so much!

Hey ladies,

Sorry I am unable to read all the posts at the moment and give you guys advice but I just wanted to give you a quick summary of my situation right now so you don't start to worry. I'm still in the hospital, originally i was going to leave tomorrow but my pain is unmanageable even with a large amount of morphine. I still can only eat ice, I had apple juice on tuesday and couldn't keep it down at all. So I'm a few days behind schedule with eating. Still no BM, still can't urinate on my own. They said chances are pretty high that I'll be going home with the catheter for a while. The surgery went fine, its just all the after stuff that seems to not be going good at all.

Once I get enough energy I will read the other posts and provide some support or help!

Love you all and continuing to pray for everyone!!!

hey, you guys GOTTA see this!!!! http://www.foxnews.com/entertainment/2010/05/05/exclusive-elvis-presleys-doctor-claims-died-embarrassing-case-chronic/

Hi Snuggle,

I saw your post about having motility problems throughout your entire GI tract. Welcome to the club!

I am 24 years old, and I have a "global dysmotility disorder," as one of my GI docs calls it. My stomach, small intestine, colon (removed 11/2007), and rectum are all affected. My life stopped when I turned 18, so I've been in considerable pain for over six years...I know what you're going through!

I had a total colectomy with ileorectal anastomosis on November 26, 2007 (I was 21). Things went really well for about 8 months, and then motility started to slow down again. Motility has gotten progressively worse within the small intestine and rectum. I will be having another anorectal manometry next week because my doctor strongly suspects rectal dyssynergia (pre-op manometry was grossly abnormal, but we weren't sure if that was due to the colon dysmotility, or if the rectum was a mess on its own). Another sigmoidoscopy is scheduled for the 26th to check for strictures around the anastomosis. I get really strong rectal spasms, and sensation in my bladder has decreased.

I've had every test known to man, so please feel free to ask me anything! You can get in touch with me on the forums here, my email is [email protected], or on facebook (search for "Allie Anderson" in Southlake, TX; my profile picture is of my brother and I...he's decked out in graduation regalia).

If your doctor isn't giving you the time of day, find a new one. I have a gastroenterologist in Texas (he's at least the 7th or 8th one I've seen here at home), but my favorite doctor in the entire world is Michael Camilleri at the Mayo Clinic in Rochester, Minnesota. http://www.mayoclinic.org/bio/10289402.html. He is beyond wonderful, and HATES to see anyone suffering. He loves the medical puzzles that we are!

A gastric emptying study that is carried out over several days will tell them the rate at which food is moving through your system. You will swallow an isotope capsule, then eat some scrambled eggs that have been injected with an isotope. They will take pictures at regular intervals to track the movement of food.

Blessings,

Allie

hey Janie, i think the reason he got so constipated was from all the narcotics/drugs he used. well i don't know much about what was his health condition, but he was a drug abuser and that must have caused his system to fail, and not just the digestive system. and what killed him was def not the constipation, a person can't die from merely constipation. i'm sure there's much more to his death.. drugs etc.. but however, what ever the reason was, it seems Elvis, the king of rock and roll, could have been a very active member of our group...... lol, esp if he was so embarraced about it, then he could have talked to us girls and we would have def helped him get over the embarracement and seek help, wouldn't we..?? poor Elvis..

Tracy,

Ask your doctor for an NG tube. Honestly, it wasn't great, but beats the heck out of throwing up, or worse yet, having one put in while you're awake. I told my doctor I wanted one, and he agreed that I should have one.

As far as the catheter, I had one for 5 days, and still couldn't pee when they took it out, so I had to be drained twice, and then had it reinserted for another 2 days. I always have trouble peeing after surgery! I think it's pretty common.

LOL Jenise :D what does a "foot stool" mean???? Jacoby, ((((HUGS)))) honey, you should NOT think about us right now you must concentrate on your recovery right now. i agree with Tracy, could be you still have an ileus, or maybe they should check for an obstuction, the anstamosis, or some other obstruction, did they do you a ct scan or a scope to check those? i couldn't eat or drink for 8 days post op b/c of the ileus, i also couldn't pee on my own for the first week. it's a good thing you're walking! keep it up! now im worried about your pain.. i mean morphin is not helping you?? in any case.... DON'T LET THEM SEND YOU HOME TILL YOU HAVE YOUR FIRST BM!!!! it's VERY important!!! we all know what rough time you're going through right now, it's a huge surgery, probably one of the hardest thing i've ever gone through myself. hang in there dear!! you're in my thoughts and prayers, love you too!! Leslie, glad you're feeling better sweets. you're one of a kind, non of us here have both our rectums and a j pouch. snuggle, have you had a colectomy yet, or any other surgery? i'm so sorry about you CC visit. are the drs there positive you're whole system is slow? i mean, is this diagnosis is definite? pls keep us posted. Alli, i'm having the same issues as you right now. i'm 9 mons post op and the slowing down was about 3 mons post op, gradually. miralax doesn't help me at all. are you taking laxatives now? do they help you? i think my only solution is doing a stoma, i don't think i have any other choice. good luck with your tests!! pls keep us posted. if they find you a cure w/o having to have a stoma, i'd like to know about it. Tracy, i also thought that if it's an end ileo, it's a perm one, but i guess that's not accurate, cause my surgoen said he can always reconnect me since the rectum will not be removed.. i don't know. and i'm also scared of the loop ileo, cause maybe there could be scar tissue later. anyway, i'm not sure about anything or what's the best thing to do, so i'd like to consult with more drs about this. hey, maybe i should order a catalog too!! i should start getting prepared!! i think i should try and see if i can meet an ostomate in person or go to a group meeting or theirs. wish we were close Tracy, so we could have done this together :)) oh well, at least we can talk here. Lizzie, LOVE YOU ♥♥♥ what's going on?? pls update us.

2b Colon free -

I haven't had a colectomy yet - they don't think it is necessary if my whole system is affected. No GI surgery either. The doctors there aren't sure about my whole system being affected. I have my small bowel motility and my gastric emptying studies scheduled for next Tuesday and Wednesday.

After answering what seemed like a million questions from the nurse, the fellowship doctor came in. He asked more questions and left. Then the "real" doctor came in with the fellowship doc and another nurse. It seemed a little intense!

So no definite diagnosis as of yet. I'm going off my birth control for the first time in 10 years. It can't hurt. My dating life is non-existant and birth control isn't good long term. I doubt it'll fix anything, but what's to lose?

buying the whole shelf of enemas at a time :)

Miralax/fiber/whatever makes it worse.