Total Colectomy Part 35

Allie,

Thanks for update on Lizzie. I was telling a nurse friend of mine the other night about her (no identity just her issues.) SHe said it sounded like there was some blood barrier issue going on and if she is outputting that massive amount of fluid, much more than she is taking in, the serum may be being drawn from her blood. I'm not medically trained so have no way to judge this. BUt this nurse has heard of this happening. Also I really wonder if she has C-Diff.

At least the immunologist seems interested and may see things from a fresh slant. SOmetimes someone with a different educational back ground can offer a new view that the other docs can't just because his background is different.

Tracy,

Great research and decision on your part. I was going to say Barb's emptying time on the evacuation of the defecogram contrast sure sounded good to me. Only two pushes, that is one good rectum! Good for you Barb and welcome to the board!

I went to dance class last night and had a blast. Felt good to do something else rather than the analysis paralysis I've been in regarding which small bowel test to do or even if I will do any. Am making sure I drink with all solids and doing fine. Will give it another couple days before I ask the new surgeon for the CT scan rather than that barium swallow. I talked with the radiology doc who was extremely patient friendly and he said most people do have a bit of a narrowing somewhere in their gut who have had surgery as everyone forms adhesions. He said the CT scan with syrup that you drink is the best scan as it is in cross sectional slices, not 2 dimentional and you don't have to push small bowel around because bowel loops are stacked on eachother. WIth the barium swallow at least at Lahey they do stop your peristalsis for 8 minutes with some natural hormone called glucogen while they take the pictures. As I was the Queen of Post-op Ileus, the last thing I need is my peristalsis stopped. Mine would be the ONE that didn't restart when the stuff wore off.

Praying for Lizzie. She is one strong lady to keep on keeping on.

Rosemary

TRACY>>>>>>CALL YOUR INSURANCE CO> RIGHT AWAY!!!!!

This could be a coding error but in your case as SERIOUS one! A Colostomy is NOT the same as an ileostomy. A colostomy on you would be a disaster as you have colonic inertia. Explain to them that an ileostomy is what you are getting. It is a stoma made out of the small intestine, not the colon which is the large intestine. Even medical insurance co. clerks are clueless of anatomy.

I must warn you to double and triple check all the way through from now until your surgery with everyone you deal with. Errors are made by everyone.

Surgery day you SHOULD be asked by multiple personnel who you are and what you are having done. PUT IT IN WRITING, COPY IT OFF, and HAND IT OUT TO EVERYONE SIGNED BY YOU.

Screw ups and hurry ups concerning surgeries are the order of the day. So call your insurance co now and tell them to change that to ileostomy with removal of only intussusepted part of your rectum and your sigmoid colon as per your plan with your surgeon. Once paper work gets screwed up it creates its own trail.

Good catch. Rosemary

Rosemary, I thought that was wrong. I will have to deal with it tomorrow...I am off to my daughters softball game....when I saw colostomy I was like ***????? LOL

Barb,
Welcome and good luck! I had a total colectomy 15 months ago and even though things aren't perfect, they are so much better than before! I only went once a week with a strong laxative, and if that didn't work, I was absolutely miserable until I could take more. I had to plan days ahead which day would be my "Poop day"and then have no other plans. It was terrible. I tried biofeedback both before and after surgery, and it really never seemed to help at all.

After surgery I went alot for about 3 months and then things slowed down and I was pretty miserable again. My problem is pelvic floor problems and a small rectocele. I also passed my defocogram before surgery with no problem, but had another one after surgery and didn't do nearly as well.

Thankfully taking miralax every day helps so much. I started taking it twice a day back in October and so far it has helped. I still need to do an enema from time to time but at least an enema works now in about 2 minutes. Before surgery they never ever worked. The miralax makes me go several times a day, and I still have to be careful about when I eat when I'm going to be away from home for any length of time, but it is so much better than before surgery. I can pretty much eat anything although salads really slow me down, but I love them and eat them sometimes anyway.

I had an appt. with a new GI today because my old GI retired. I love this guy! He said he has 6 other women patients who have had the same surgery I had for constipation; one chose an ileostomy because she had problems afterwards, but the others are doing well. He seems so much more familiar with this surgery than my old GI, and I only wish he had been my doctor for the part 18 years because I'm sure I would have had surgery sooner. My old GI really discouraged me from surgery, and this new doctor said that even though some see it as extreme, it's what you sometimes have to do. He seemed very knowledgeable about the entire surgery and gave me tips about taking lomotil when I go out and want to have a late dinner, or dinner and a movie and don't want to have to go to the bathroom, or start getting that pressure I get without miralax. I told him that's what I had been doing! He even explained how I should always take a probiotic with any antibiotics now that I don't have a colon, which my GI nor surgeon ever told me. Judy from this board told me about that, thank goodness, but it's good to have a Dr. that finally seems to understand!

I have an appt with my surgeon on Thursday. The last time I saw him he ordered another anal manometry and I haven't gotten the results yet....that was back in October!! That was the visit when he asked if I wanted a stoma because I was having so much difficulty going and I was having so much pain and pressure in my rectum. He suggested as a last resort I try miralax, and since it's worked, I just haven't gone back to see him yet. I've had a couple appts. but had to cancel for various reasons. I'm interested in getting the results of the test (before surgery I had one and I want to see if things are worse like with the defocogram).

Tracy,

I know you're ready for this girl!!! Hope everything works out ok and that you won't need more surgery down the road. Be sure to have your husband or someone keep us posted on how you're doing.

Allie,
Thanks so much for the update on Lizzie. She's one tough girl. Be sure to tell her I love her and can't wait to talk to her when she's up to it!!

Hodaya,

So you decided on an ileostomy? Have you set a date yet? I'm so sorry you have to do that, but I pray that will make things so much better for you. Honestly, if I had the horrible rectal pain and discomfort again that I had for those couple months and couldn't get relief, I'd ask for one too. I'm so grateful that miralax seems to be working for now, but I'm always afraid it will stop!

Hope everyone else is doing well....

Lori--good luck sweetie!! Make sure your hubby keeps us updated on you!

Janie

Janie, Glad you got a GI that gets it. Makes one feel "at home" when they make such a find.

Hodaya, If you can have the ileo done laporoscopically that would be the best with fewer adhesions and quicker recovery. Good for you. Sometimes you just have to decide and go for it.

I may end up doing the small bowel follow through or the CT scan whichever my new ileo doc thinks. I did forward the info I got from the radiology doc. Every medical thing I have done in the past has been a disaster, but if something is stenosing in my stoma and something can be done, such as dilation, I would be stupid to just not deal with it. Sometimes stomas only narrow at a very low level just below the skin and can be dilated with someone putting their little finger (gloved and greased) into it. I do have confidence in my current docs, so I need to just go with it. If anything did happen they would deal with it unlike my original surgeons who were not typical. I need to get by the past to move on to the future as that is all there is.

Hope Lizzie gets the cure whatever that may be. Rosemary

Rosemary, yes, I think if the problem is simple that you need to have it fixed.

I called my doctor's office and insurance....and they said the doctor has for me to have a subtotal colectomy w/ fecal diversion, an ileostomy. They said not to worry about the exact wording, that it is just a coding thing. I will definitely be sure everybody knows exactly what I am having done when I get to the hospital because I don't want any mistakes. GEEZ

Marisa,
So good to hear from you! Hope you have a great summer. You go girl!!!

The extreme pressure--is that in your rectum and you feel like you have to go but can't? Even with miralax? I have that sometimes...usually if I eat lunch, which I normally don't. I can snack a little throughout the day, but if I eat lunch sometimes I feel like it's just sitting in my rectum. Yuk. I just come home after work and do an enema when this happens....not alot usually comes out, but enough to make me feel better. I see my surgeon tomorrow. I'm sure it's the rectocele, but also pelvic floor problems, so I'm not sure if recotcele is worth fixing...

Janiepain -

Thank you for writing and sharing your story. It is helpful and encouraging! Especially in these last weeks before the surgery. I have been so confident that this was my decision...and although it still (definitely) is...I am starting to get a little worrysome. It is just scary because they say they do not know for sure if the surgery will work. My surgeon told me about 70% patients are "cured". And we are both hopeful I will fall into that category.

I know what you mean about "poop day"....I have a schedule too and it sucks! I usually cannot wait to go home after work everyday and just try to get comfty - and that is so not the way to be - and soo soooo not me. I used to be a person that would go go go...doing a million things at once, and I liked that. But I have slowed down so much.

Laxatives do not work anymore, and looking back I feel a bit guilty because now things are worse. I am thinking I hurt myself more than helping by taking them - getting dependant on them - and now being worse off. I often wonder how this all could happen to someone, me, all of you! It is very very surreal and very real all in the same token.

So far it doesnt look like I have a rectum problem or a pelvic floor issue, but I guess I will know more after the surgery, eh? Haha....its not really funny, but I guess we all learn more as steps are taken. The rectocele is supposedly 2cm and from research doesnt look to be an issue, but I have a test on the 18th from a doctor that should know, so we will see what comes of it. I suppose if it is significant enough I will have to postpone the colectomy ?? We shall see.

What surgery are you moving towards now with your new GI doc/surgeon? It must be so nice to have someone that understands the intestines and mobility issues! I read so much about how it is one of the hardest things to diagnose and understand in the medical field. A big reason why it takes so long to make a decision on how to move forward.

Miralax helps me go a bit, yet it is all just mush when it comes out, and only appears to work over night. If I take it before I go to bed, sometimes I can have a mushy release in the morning. It does make my stomach watery though and I can hear it sloshing around in there - annoying!! Everytime I eat I get the leaky valve noisey, so weird!

I am very glad it has been helping you though, so you can feel a bit normal! Normal is good! Ha ha

Good luck tomorrow at your appointment and I hope you get some good answers to help you move forward on your anal manometry.

KIT and thank you thank you thank you!

Barb

All -

Post-Total Colectomy Questions

I have read about weight challenges initially after the surgery and there after. Some say that they lost a lot of weight and others say they gained alot of weight...so I am confused. I have always struggled with my weight to keep it at an average size, so I am curious on how I will need to maintain this after the surgery. I am currently 5'5" and around a 155 lbs. Curvy shaped, smaller waist and big bottom half (apple bottom).

All in all, if I can go to the restroom regularly after the surgery I will be a much happier healthier person, but I am curious about this subject. So, if anyone you can share your experiences or knowledge I would greatly appreciate it.

Ok, off for a walk - will check back later. Thanks you all so much.

Barb

Barb, I had a total colectomy for colonic inertia 1 year ago.  I lost 30 #, gained 10 after TPN and have kept the other 20 off.  I needed to take it off too.  I have started with some constipation again and was instructed to take Senekot, seems to be helping.  I was so used to going 5-10 times a day after surgery now I am going 1-2.  I hate to gain anymore weight back.

Any one have any good ideas to keep things moving.  Mirilax never agreed with me, I didn't like the bloating.  I have been having rectal spasms, wow is that uncomfortable.

Off to work, I appreciate any ideas.  Connie

answers4me2 said...
You know girls, I just had this crazy thought and it really freaked me out. What if our small intestines are messed up from all the laxatives that we are taking. Seems like since the laxatives go through the small intestine that the small intestine may be used to the laxatives too. Is this a possibility? I am obsessed with this pooping issue and my brain continues to think about this, even while I am asleep. I woke up with this thought clearly in my head. UGH I must dream about pooping issues. GEEZ

I think about that all the time.. I fear that the laxatives we took for colonic inertia had a major effect on our small intestines. I just don't know though.

Hi Jacoby,

See my post I just made to Tracy. I think your small intestine will be fine. Rosemary

Check out the part where I had to take 66 gallons of Colyte Bowel prep in 13 months to get stool through my lower colon scarring prior to getting my needed ileostomy.

I too was worried I was killing my small intestine. BUt I did not as the ileo has worked fine for two plus years. I MAY have some issue going on now, but not with the function of the small bowel, but maybe a kink or narrowing that is what the small bowel follow through will show.

SO take heart. Rosemary

Rosemary, maybe I am obsessed and should be a person on the show, OBSESSED! I mean, what normal person goes to sleep after surfing the net all night long about poop issues, then wakes up with yet another idea that has to deal with pooping? And then worries me to death thinking about it. You have to remember, I have been constipated for as long as I can remember and have taken laxatives for years. I took correctol as a child, less than 10 years old. My small intestines better be okay! But, atleast I have my trusted miralax! I guess that is all that matters. I can always take that....

What kind of reaction did you have from the barium? I bet the stuff will just sail right through you too. I hope there is not any narrowing or scar adhesions....that is weird about the grape juice...but did you have any discomfort or pain??? Maybe your small intestines are finally slowing down. This could be a good thing, right? But, still worried about the blockage with cottage cheese and potatoes. That just doesn't seem right to me.