Total Colectomy Part 38

hi hodaya, are you still doing well with your ostomy? any problems? I am trying to get up the courage to call my surgeon and just go ahead and schedule but with so much family opposition it is very difficult to take this action. A doctor I saw recently wants me to do a 72 hr stool collection (super gross) so he can check to see if I am losing too much fat in my stool?? Has anyone ever heard of such a test and how it would be relevant to my situation?

Thanks,
Gilda

2b ColonFree said...
Life, it wouldn't be wrong of you - what's the purpose of your gi sending you to a surgeon anyway...? if he's sending you to a surgeon, then he thinks you need a surgical solution and since there's no surgery to fix the puborectalis (the muscle that causes the anismus), the only surgical option left to your situation is a temp colostomy, unless they're considering a resection..?

whatever you do, ask for more than 1-2 opinions.

Hodaya, you can me Andrew

How is life with an ostomy? With your pelvic floor problems did you feel like you had a golf ball in your butt? (for lack of better wording)

Also, did you have any urinary symptoms? I seem to have got those as well.

Did that all clear up with the ostomy?

Hi Everyone,

 

Please keep praying for Lizzie. Her surgery is coming up very soon- Wednesday, November 17th. She has been very sick with the flu and a stomach bug, and even though she feels like the flu is better, she is still having trouble with vomiting. There aren't any obvious indications of an obstruction on CT...pray they can figure out what is going on.

 

I'm in the middle of a Sitz study. The first x-ray was yesterday, taken 13 hours after swallowing the pill and all the markers looked like they were pretty high up. I took the pill 38 hours ago and I have not passed any of the rings. Pretty astounding considering that I only have a small intestine! How's that for slow motility. I have another x-ray tomorrow and one on Friday, if needed. A defecography is scheduled for Monday, November 8th. Hopefully all results will point to an ileostomy as the best option and my parents will get on board. We finally got the insurance mix-up sorted out, so I'm covered again.

 

Sarah - Thank you so much for that article! How have you been doing?

 

Andrew - Welcome! I had a total colectomy for colonic inertia three years ago; I was 21 at the time. You can skip biofeedback and go straight to surgery if you can find a surgeon who will do that. My surgeon thinks biofeedback is a waste of time, so I didn't have to do it prior to the total colectomy. I have a motility disorder that affects my entire GI tract, so my pain is still significant (but I did pretty well for a few months following surgery). I did biofeedback for several months this summer, and it made my symptoms worse. I am currently having more tests done, and then hopefully having an ileostomy and my rectum removed. Have you had a Sitz marker study, gastric emptying study (scrambled egg test), or defecography? Those would all be worthwhile. Any questions, please feel free to ask!

 

Love and prayers to you all!

 

Allie

Oh, and Allie, how did they, for a lack of better words, "discover" your pelvic floor problems? Manometry? Defecography?

And btw, beginning next year is it possible for you to stay on your parent's insurance with obama-care until your 26?

I know I'll be able to get on my step fathers insurance next September. My parent's are dead set against me having an ostomy as well, but my mom is beginning to see the light of the situation. I cry everyday.

Post Edited (Life Happens) : 11/2/2010 1:40:41 PM (GMT-6)

Andrew - Normal small bowel transit time is great news! So glad to hear that. My entire colon was long, "torturous and redundant," as the path report read.  Mayo Clinic found my pelvic floor and rectal issues with anorectal manometry. That was done prior to surgery, so I have had the pelvic floor/anismus/rectal inertia diagnosis for over three years. I probably could have gone straight to an ileostomy, but they wanted to see if the rectal issue would resolve once the colon was out. Biofeedback confirmed my pelvic floor problems...the doctor and PT had never seen resting muscle tone that high, and the therapy honestly made the pain and spasms worse.

 

You're right about that new law. My insurance issue came up when I dropped below full-time status as a student. I have a degree, but I'm working on a second Bachelor's, and I'm not physically able to hold a full-time job to get my own insurance. With the new law it doesn't matter if you're in school, working, living at home, or not. As long as your parents claim you as a dependent, you can stay on their insurance until you're 26. Keep talking with your parents...this is your life and your body, and you deserve to be able to live free from pain. If you're on facebook, feel free to track me down. Search for "Allie Anderson" (in Texas) the profile picture has a gray horse in it.

 

Gilda - A defecography is a really good idea. Not a pleasant test, but it does yield a lot of information. I do not have any colon left, and they're doing one on me. A defecography tests the function of the rectum, but barium in the small intestine is not a big deal. I have had a full barium follow through, and I had to drink barium that was the consistency of nearly-set concrete, followed by more barium that was the consistency of a milkshake. All of that barium went through my small bowel. It took forever and made me feel sick, but there aren't any real adverse effects from having barium in the small bowel. I'm not sure that whoever you talked to really knew what they were talking about.

 

Allie

Hello everyone,

I wanted to post in case it helps anyone that's had surgery recently. The last time I posted (probably in August) I had just had surgery (at the end of July) and was freaking out about a recent slowdown in bms. I was stopped up and was following the low residue diet and I was so concerned that I was always going to feel that way. I was very quick to judge my results and get upset about it.

It actually took me a couple months to figure out what I can eat and what works for me. And now I feel great! I feel great everyday; not just good and bad days. I can do what I want everyday without hesitation and my mind isn't always on this topic anymore like it was before and right after surgery. I hope anyone that has had surgery recently that is flipping out or unsure about the results can take comfort in this.

The low residue diet list that they give you in the hospital includes all kinds of things and I found eventually that I can't eat a lot of those things. Bread, for example, isn't an option for me. It may work for some people, but that was the culprit back in August when I was so upset and wary about how I was feeling physically. Peanut butter is also not good, of course. I stick to mainly soy products, yogurt, tuna, eggs, meat/proteins, and not much dairy or bread/rice. As long as I follow the things I know work, I feel great.

For anyone who has recently had surgery or has a surgery upcoming, you should not get so upset like I did before you know what's right for you. It probably won't be the entire list that they give you. You should try things and take note of what keeps you going. It took me weeks to figure it out.

I had surgery at the Cleveland Clinic and the doctor was very smart and impressive and her nurse practitioner was wonderful. They have been helpful throughout all of this. The nurse recommended Plum Smart (the juice) everyday. I drink a glass everyday and it really helps. I would definitely recommend it. I drink it right before I have coffee and I usually notice a difference right away. (There is regular Plum Smart and Light Plum Smart. I started getting regular because it says on the pkg "clinically proven" and I'm a sucker for those things, and the Light doesn't say that. This time I got the Light, and it also works great--with less calories.) I haven't had to take Miralax or anything else often at all. I might use it once or twice a week (depending on what I eat).

Also, my boyfriend recommended Gold Bond medicating lotion (in the green bottle) for when things are sore or burn (down there), and it works great. I tried several things and it is the best. It's not too creamy like some of the other products. It might hurt (and make you scream) at first, but it will feel much better shortly afterwards.

I hope everyone else is doing well. I haven't checked this in a while. I wish you all the best. Have a good weekend!

Quinn

thanks for posting - and i hope i have a similar recovery as i have been freaked out cause i only go if i drink prune juice twice a day and a little at bed plus i also get a daily tummy ache which is misery. 

I take it you eat veg as well?  Sounds like a diet high in protein - makes sense cause when i had the bag i used to get high output with protein rich foods.  id hate to not eat bread again though :(

sonnygarcia, I'm not sure but i think everything was infected with VRI. I just found out i have 1/2 a sigmoid colon plus rectum

Sarah, I am so sorry that you are feeling so horrible. Have you had an abdominal CT with contrast (both oral and IV) to take a look at your liver and the vessels? Or a HIDA scan? Have they ever done one of those? I pray that they find something...how did the MRI go? I know it's awful to get "normal" test results all the time.

 

I haven't thrown up in probably 8-10 years. I get horrible nausea and pain, but I have never vomited with my motility problems. Even with the long post-op ileus I had no vomiting, just uncontrollable nausea. They kept pushing Zofran through my PICC line, and it just didn't do a thing (and I'm highly allergic to Phenergan). What anti-nausea meds are you on?

 

I haven't had a small bowel manometry. Mayo did one of my colon, but not the small bowel.

 

I had my last x-ray for the Sitz study today. The first x-ray was taken about 13 hours after taking the pill and all the markers looked like they were pretty high up in the small bowel. The second x-ray was taken about 65 hours after taking the pill; there were only a few markers left, but there were markedly dilated small bowel loops, large gas pockets, and even the radiologist noted that there was a very large amount of stool in me. The last x-ray showed no markers, but again dilated loops and tons of stool. My gastroenterologist contacted me with his initial assessment after the second x-ray. He felt that my rectum is to blame for most of my small bowel motility problems, and he said that an ileostomy will most likely be my best option. He did mention trying to find a pain management and laxative combination, but I am so sick of trying different meds- none of them work. I am having a defecography on Monday, so we'll see how that goes.

Hi everyone, just a quick check in from Dakar, Senegal Africa.  Great bus tour today but soooooo hot.  Thank God we got an airconditioned bus!  We were not supposed to.  So far so good, keep praying for me.

Lizzie, So sorry to hear your op is postponed.  BUt seriously talk with your doc about  Seprafilm adhesion barrier.  It sounds like you are having small bowel partial obstructions from adhesions after all of your surgeries.  Seprafilm is supposed to reduce the severity and number of adhesions that reform after a surgery.  Even if you are not prone to adhesions, after 7 surgeries you will obviously have them.  Each surgery then creates more.  I pray for you.

Gilda,  The fat stool test is to check for reasons for your diarrhea.  Your doc is trying to determine the cause of diarrhea prior to doing a stoma for fear you will just have diarrhea with a stoma.  He is doing the right thing by you.  Do the test.

Tracy, hope all is going well.

Allie, Good luck getting the ileostomy.  Hope your family can soon see the need.

This is the only day the internet is really working rapidly enough to log on here on the ship as usually the satellite connection is sooooo slow, so glad I checked in.

Glad you are still doing well Hodaya.

I continue to pray for all of us on here.  Gilda, if you do get that stoma, as Hodaya says, it's not the end of the world.  I've travelled more since getting mine than I did prior and that is saying a lot as I've always been a traveler.

Rosemary

Good to hear from you Rosemary and i am glad you are enjoying your trip.

Lizzie and the rest of you; I pray for you daily!

Gilda

Hi Everyone,

Keep your fingers crossed for me.  Our next 3 side trips in Ghana, Togo, and Benin are in a severely hot zone by the equator.  Bus in Dakar was airconditioned but these are guaranteed not to be.  So I plan to bring 3 quarts of water, an ice pack, wet my hair and shirt and wear a sun hat and as little else as possible. Hoping I can see these places without dehydrating.  I alerted the medical center on board of my ileostomy and that dehydration the most likely thing.  So if I pass out from dehydration they just give me a few IV's.  Hope not to need it, but they thanked me for the heads-up.  After these we go very far south of the equator and all will cool off.  Wish me luck.  I miss my healthy colon!

Wishing you all well.  Rosemary enroute to Ghana from Dakar

Hi Rosemary,

Sounds like you are on an exciting trip!  I really didn't know that Ostomates had that much trouble staying hydrated.  As you know I still have 2" of colon left  and am hooked up "internally" so altho I seem to need to drink about 6-8 of the regular sized water bottles each day; that's nothing compared to your fears of actually passing out due to dehydration!  You said that they would be prepared to give you an IV if necessary; would this be done on the tour bus?

As you can tell, I still haven't made my decision about having an Ileostomy.  I guess the reasons for my indecision are:

1. I do usually have a period of about 4 hours mid-day when i feel pretty good.

2. I hear success stories and then I hear "night-mare" stories about Ostomies.

3. My doctors don't really know if it will benefit me or not.

I think one of the main reasons I would have it done is because I don't want to constantly be aware of "what my bowels are doing."  I know this sounds weird but I am rarely really very comfortable unless I have gone for several hours without eating.

Do you get a feeling like you have to have a BM within minutes of eating?  I know that you have a bag/pouch but even then, are you aware of "things moving."  Is it uncomfortable?  If you have eaten a small breakfast (I only have a little coffee and 1 pce of toast) and then hours later eat a very small amount (maybe 1/2 of a sandwich); do you immediately start "outputting?"  Is this a problem for you?  For me, I don't dare to go out and eat with anyone because I always have to use the bathroom within 30 -45 min. after eating and sometimes by then we are back in the car driving.  Maybe "outputting into a bag" would make life easier?

I know you are just trying to have some fun Rosemary but if you get the chance . . . . please answer soon!

Anyone else reading and with experience with this; could you please respond also?

Thanks,

Gilda

Post Edited (Gilda) : 11/7/2010 2:43:53 PM (GMT-7)