TOTAL COLECTOMY PART 30

Lizzie, good luck on Wed! Rosemary and Lori have so much good info and advice for you, it's so helpful and encouraging to have such knowlagable and compationate ppl on here!! ever since my drs told me about the surgery i've been in anxiaty, but mine is not as bad as yours. i just find it hard to swollow most of the day, like i have a huge lump in my thraut, but actually there's nothing there. and yes, i feel very vulnerable and mostly scared that i act funny at times, it's the stress making me kinda jumpy and nervious at times, something i never experienced before, but only since talking about surgery. but i'm working on myself to get over it, i must, cause it takes too much of my energy. the possibility of an ileostomy is always at the back of my head. when nothing works for me anymore, i will definitely opt for one. i must admit, it's scary.. i would lie if i said it isn't. good luck honey, love you always!

Thanks for starting a new thread Hodaya! Have you started the new doctor's suggestion ( magnesium) yet?

Tracy, thinking of you... hope this new doctor gives you hope instead of a feeling of dismay. Let us know how it goes!!

Lizzie, I know Wednesday is your appointment, is this with CC? I can't recall!! Anyway, I hope that they see how you react to food and see you need help!!

Janie, Jen or Judy.. I need to ask what a BM is like for you. If I remember right, none of you suffer from rectum issues. I was worried about my rectum, and pelvic floor issues, but so far (crossing my fingers) my rectum seems to be working. I reduced the MiraLax to 2 x's a day, and my stool is more like toothpaste.. and comes out kinda like little worms (sorry TMI!!). Would you say that is normal? Also, what do you actually feel when you have to have a BM? All I feel is the feeling like I need to pass gas, usually all of a sudden - the feeling is in the rectum, and I know this means get to the bathroom ASAP. I don't know if I should try adding any fiber, or reduce the MiraLax a bit more. So far.. foods all seem to be fine with me.

NO, I wouldn't add fiber yet. Fiber turns my poo to cement and you are too soon out of surgery to deal with that if that happened to you I would think. I think toothpaste is a good consistency. That is the consistency of the barium when they did my defecogram???? I bet you still have swelling and maybe that is why you have skinny poo! Hey, as long as you are going then be very happy. I bet you feel awesome and empty! That has to be a great feeling, Does your stomach feel gassy? Can you fart?

Rosemary, can you eat pickles with an ileostomy? Because I love pickles and eat them alot and drink the pickle juice too.

Rosemary, I just noticed you also started us a new thread! Can you move your post over here?

Lizzie,

My belly swells up real big too. Probably the size of a 5 to 6 month pregnant woman. I don't vomit though, but will feel extremely nauseaus if I take too much miralax and can't get it out. It is funny though....my husband will flick my belly and it sounds hollow, like a watermelon. Is yours like this? I am usually okay, even with a distended belly if I don't put on anything binding. If I have on jeans and my stomach swells, then I have to take them off immediately seeing as my stomach will get even bigger and will hurt horribly if it is squeezed at all. Are you like this? I have found that I can use a rubber band if I have to unbutton my pants while I am out. Send me a picture of your belly. Can you post it on here. I feel so bad for you. If these doctors only know how much we look to them to make us better. They might treat us nicer if they knew how much faith we have in them. LOL What doctor are you seeing Wednesday?

Hi Tracy,

Thanks. I have no clue how I missed this and started "my own" tc 30 thread. Anyway, I found you. I just packed all day for my cruise and the cruise line stopped today to get our big bags that will supposedly meet us on the ship Jan. 10. So we only have to carry a small bag on the train Jan 7 to meet the ship. So that part is good. But my eyes are twirling in my head from all that packing. Was at it for 9 hours straight! Auugh! Rosemary

I did think of this. In my research, I read that intussessuption(sp?) can only be seen on defecogram after you empty the paste out of your rectum.....well, I left with a rectum full of the paste so they couldn't see if I definately had intusseption. At my appt with him this summer he said some "slipping" of the rectum....what is that? Intusseption????? Because something seems to block the rectal opening and this is why I have to insert my finger, even to release water. Do you guys think intusseption could cause this anismus???????? Because on my defecogram, the anismus was not seen until the very end of the tape and this was after repeated attempts to empty the paste. Before then, it was just alot of straining with a tiny bit of the paste coming out.

hey, just wanted to say hi, i need to catch up, but i'm in hurry for work, so i will when i get back. LOL i can't live w/o you guys.... i'm a slower reader in english than in hebrew and also expressing my self takes me longer than in hebrew, so it takes me longer to read and post..

Rosemary, you did great packing!! I take 2 weeks to pack for a 7 day cruise!! How long will you be gone? I always get internet access while onboard.. if you do, pop in and say hello!!I'm here in FL but on the other coast (west) Weather wise - we are usually pretty much the same. It's cool here in the 60's tomorrow, but Wed. it warms up again into mid 70's. Tell us again - where are you going!? I jealous.. but I hope you have a wonderful, fantastic time!!

Lizzie, I'm intrigued to see your belly! Can you post the images here like I did my barium enema? I think t's important the doctor sees how you get with eating.. I'm just really praying for you! My belly does blow up (not so much now post op and on this low residual diet) but I never had to increase my pant size - but sure did like to unbuckle or take them off!

Tracy, when is the last time you had a defecogram? I had 3 within this past year - and at 2 different places, with 2 different results.. but in the end, the one place that said I had a sigmoidocele and rectal prolapse was more accurate - since the barium enema also noted the prolapse. Before my sacral colpopexy, my rectal prolapse was protruding externally - when I had a BM. Not a whole lot - but enough to freak me out - and that's when I decided to finally seek help. I had a rectopexy than as well... but either my prolapse was not pulled high enough up, or I ruined the surgery with all the straining I did.. the tests revealed a prolapse - internally. It could also be called a descent. This, along with my sigmoid colon was blocking or compressing my rectum, causing me not to be able to have a BM. I PRAY it is all fixed, but honestly - I have had chronic constipation for YEARS prior to any of this surgery. My GI said I have CI, but the surgeon said no - it was blocked, causing it to be slow.. and I hope that is the case, or I may end up having to have the rest of my colon out... but again, not going to think about it because of now. things are better then I can remember. I'm going.. and my bloating is a fraction of what it was.. and I am thinking I just might be another success story! Won't that be great.. but surely, I would love it if each one of you eventually end up a success too!

Jenise, I am hoping you don't have anymore issues with CI, but hey if you do, just take the miracle Miralax. Who cares? I will take it for the rest of my life if I have to. But I did read that miralax can cause liver problems???? Have you ever read this? But it did say it won't cause the discoloration of your colon like stimulant laxatives do and that is was safe to take in large doses and everyday. I will ask my doctor tomorrow if it can cause liver problems.

I had 1 defecogram 18 months ago. All my tests were 18 months ago except for the small bowel follow through. UGH, I hope he doesn't make me get the defecogram again! EWWW Did we have to do a bowel prep before the defecogram??? I forget! I do think he should order a pelvic MRI like you had with the barium and where you sit up and they take pictures. And then I think they should suck the barium out since I can't get it out and then do more pictures to see if I have intessuption. But, I don't think all hospitals do those special MRI's.

Lizzie, I have been researching and found this...

Obstipation is severe constipation caused by intestinal obstruction, which may be acute or chronic, partial or complete. Constipation, abdominal distension, painful cramps and vomiting are main symptoms. Obstruction of the intestine may be caused by a polyp, cancer, scar tissue (adhesions or strictures) developed after surgery or inflammation, volvulus (intestine twist upon itself – congenital defect found in infants), intussusception (telescoping, when one part of intestine slips into adjacent part; found in infants and young children), hernia, gallstones or foreign bodies. Certain diseases, like scleroderma, lupus or amyloidosis, can affect motility of the colonic wall. Ultrasound can detect excessive stool within the intestine. Obstipation has to be solved quickly by operation to prevent bowel perforation, bleeding or infection.

It sounds like you could maybe have something like this to me. I did watch mystery diagnosis recently and this poor lady would get very sick with vomiting and she ended up being dx with intussusception! She had several xrays, mri, ct scans, etc. This went on for a few years. Finally a doctor did another MRI or a ct scan, I don't remember which one, and they actually SAW the intussecption. She had survery and is now fine and normal with no more vomiting. I am so worried about you. How you are working I have no idea, but sometimes it is easier for me to work because it keeps my brain off of my problems.

I went to bed early and then woke WAY TOO EARYLY. I forgot to change my estrogen patch and that really throws me. So it's about 5:30 a.m. here and I need to type this then sometimes I can go back to bed. The friend I am going on the cruise with keeps wimping in and out of the deal. yesterday when the luggage was picked up she did not have hers ready. Three months ago she said she wasn't sure if she wanted to go. If she backs out Jan. 7 when we go to meet the train I will be circling S. America alone. God, hope I stay OK more than ever if that is the case. I dehydrate at night and takes me hours to start peeing in the A.M. Right now I'm real hungry but gotta wait because I need to change my bag in the later a.m. and it's sooooo hard to do it guts are active, though active is a GOOOOD THING.

Lizzie, take those pics of your stomach to your doc, as Jen says they must really be something.

Jen, sorry you are not doing well. What was the experimental drug Jenise was given for ileus prevention in the hospital? Could your worsened gastroparesis still be actually some long lasting ileus. You deserve to feel better than this. Prior to my needed ileostomy surgery I had normal hunger (I mean really hungry due to not being able to eat for 13 months.) But now I fill fast. Either my stomach shrank or more and more surgeries can actually cause gastroparesis. Actually at Mayo prior to the needed ileo I had rapid gastric emptying. It may still be. Ironically fast and slow gastric emptying can both give bloat etc. Luckily so far mine is just early satiety. But I think when I get back from the cruise in March I will ask for a gastric emptying study. With accelerated gastric emptying you are not supposed to drink with meals but just between meals. With slow gastric emptying you are supposed to drink with meals. So I need to know what I got. I think each time we have a surgery the nerves to our stomach get screwed up.

Tracy, trip is Jan 7 - March 17 and I will have internet access. So I will plan to pop in now and again. I'm so hungry now that I may just have an early breakfast and do that bag tomorrow. Trust me the bag is not great, but I was going to die without it due to all the gut scarring from the unneeded 2006 surgery. BUT I'm glad I did not have to make the choice whether to get it or not like you. I don't know what I would have decided. It's not awful, it just takes planning. Like if you have caffeine coffee and orange juice be sure you have access to a bathroom. especially when it is new and your small intestine is still super active. In time it slows down a bit to act more like a colon, but one trip I was on I actually had to tell the tour guide I had an ileostomy and had to empty my bag right away. Luckily she knew what the heck it was and got the bus driver to stop at a bathroom right away. I think she didn't want a mess in her bus. Smart lady.

To prove how OK I was in the beginning, yes I could even poo in public restrooms. I remember one time at the Dallas Fort Worth airport, I got the urge while waiting for a flight, got a coffee and orange juice and took a huge poo right in the first stall in the bathroom. So what the h---- was all that 2006 surgery about. I obviously did not have any bad or redundant colon. I think my symptoms were just stress in 2006----was caring for my mom, for an aunt, working and communting 60 miles per day. Apparently I had a rectocele, but the reviewers all said it emptied. So my atty is right, the real reason for my intermittent incomplete rectal emptying may never be known. All I know Is I was very healthy. It creeps me out that my 2006 surgeons saw my sigmoid was not redundant and removed it anyway, then just basically did what they felt like with other procedures, no leak test, and no follow up. In their responses to my suit, they did not even remember me as a patient by name. That is freaky. I don't think those 2 view people as real.

To my knowledge my tribunal has not been rescheduled but I may call and ask today. This whole suit thing won't get my body back but it is still important to me as I want to at least make those two docs pause and THINK before they do unneeded and some unconsented surgeries on people again. I really wonder if they are totally devoid of a conscience. Do people exist that are like that or did they just get all caught up in this gotta make money thing? All $2000 of it big deal.

Anyway, cruise goes out of Ft. Lauderdale, through Panama Canal, down the west coast of S. America, to antarctica, up the east coast of S. America, and back to Florida via Barbados and a few caribbean islands.

Well, back to bed then I gotta force myself to bathe, shampoo, change bag, and get out and do errands.

My big fear of course is readhesion obstruction and so far so good that has not happened and may not. BUT I also wonder how is it possible to live without the use of the colon as that is what draws water and electrolytes back into the body. But many of you have no colons and are doing OK. One lady I know has been without her colon for 40 years, is 75 and is still going strong. So, I guess it is certainly possible. It just blows my mind.

Good luck to all, Rosemary

Thanks for the med names Jenise. Yeah, the friend will lose a bundle if she cancels. But hoping I stay well, I will sail on. You're right about wasted worry; I gotta put this adhesion thing out of my mind and just enjoy the present. As that's what it is a present.

Lizzie, post the pics, let's see your belly. Be sure and bring them to the docs and do the live demo. Though you will then feel awful, but he needs to see this.

Good luck. Rosemary