TOTAL COLECTOMY PART 18

FELICIA - So sorry to hear you've had cancer and the chemo destroyed your veins.  I hope all is well in that department and you'll never have to face that again - my heart and thoughts are with you!!

Let's see, packing for the hospital - there's a post somewhere on the many "PARTS" here but it's pretty far back.  I will try to remember some of the suggestions others had to prepare them for the hospital (I went with just the basics but wished I would have known more).

A lot of people swear bringing chewing gum, as it's supposed to help with the relief of gas after surgery.  Some bring personal things such as their own pillow.  The hospital only supplies the necessities so bring your own brush and/or comb, shampoo and conditioner, soap or body wash (the hospitals aren't the best), lotion, toothbrush/paste, loose fitting pj's, comfy panties, robe/slippers.  Others have taken Depends for the "just in case" security.  I think another great thing to bring besides your own toilet paper is those "wipes" that Charmin put out, for a cleaning up tool after your bm's.  I know others have brought other things and hopefully they will respond with their ideas for you.

SAHARRA - Welcome!!!  I'm so sorry to hear about your situation.  I can relate to you as far as being constipated your entire life.  My problem started way back when I was a toddler and I was almost 44 when I had my surgery a year and a half ago.

Personally, I feel that because you have no insurance they are blowing you off - a very sad scenario indeed.  With all 25 markers still present in the colon after the sitz marker test that would indicate to me or be a sign that you're suffering with Colonic Inertia, among all the other things you've mentioned, such as medications tried but haven't worked and a lot of your symptoms.  I would almost bet that if you had medical insurance they would take your situation more seriously with open arms.  I have absolutely no idea where you can go from here, but wish someone, somewhere would take on your case.

SOURBUTSWEET - Welcome!!!  I will have to agree with you on the anal manomatry test, OMG!!!  Thankfully I had a wonderful lady who did her best to make me feel as comfortable as possible.  All the testing, with the exception of the sitz marker really blows our pride right out the window, especially the defogram - YIKES!!!

I'm happy to hear you've read thru the posts here.  Yes, thru the good and bad I was also ready for the surgery and can tell you it's the best decision I've ever made.  You've done yourself a great justice by reading and hearing others stories here.

I don't think you will have any issues having another child, but it would be a good idea to ask the surgeon.  You may have to work "inside" until you know how your body responds for the first few months post-op.  I do believe in time you'll be able to resume the "freedom" of the outside.  In the beginning things moved thru fairly quickly after eating, but over time it does get better, however, there is no timeframe - it's an individual thing.

I hope I was able to address some of this questions for the newbies and again, WELCOME!!!!!! 

   

Stuck42long.....what is the defogram? I hope I get to slide by that test..lol... its alway a pleasure to learn more info and I'm open to everything. I pretty much had to research a lot on my own. My doctor didn't want to tell me what was going on because I'm so young. He didn't believe it was possible for someone my age to have this problem. Its easier when you already have an idea of what is to come, for my own peace of mind. My husband has had a hard time with this also, but it helps to be able to explain to him. Thanks again!

Lizzie.........I'm from the detroit area, are you close? Can you name your doctor? What hospital did you have your surgery at? Good to know everyone is doin well!

Mom..... its great to here how well your doing. Hopefully I can recover like you. I love to workout so ill be so excited to see what I can do after surgery. Wow that's some great news for today. I heard being active before surgery has a big influence on how we re-coup. Is the sitz test the same as a transit study test? Cause I've had that already.

Resa..........I'm not going to be in a rush to go back to work. My plan is to paste myself to prevent any futher injuries. I know how it is to over do it, and it don't feel good. I get something like 4 months off work before they start playin wit my money. That's doesnt include my vac/or holidays, so I plain to recoup and enjoy. I know I can find some inside work, I just don't want to be stuck inside. Can you explain the defogram test, I haven't had that test.

sourbutsweet said...
Stuck42long.....what is the defogram? I hope I get to slide by that test..lol... its alway a pleasure to learn more info and I'm open to everything. I pretty much had to research a lot on my own. My doctor didn't want to tell me what was going on because I'm so young. He didn't believe it was possible for someone my age to have this problem. Its easier when you already have an idea of what is to come, for my own peace of mind. My husband has had a hard time with this also, but it helps to be able to explain to him. Thanks again!

This is just an overview of the defogram:

A defogram or defocography study is a painless X-ray examination that provides information on the function of the lower colon or rectum, and the surrounding organs such as the bladder, vagina and small bowel. A defogram analyzes the pelvic muscles, specifically their strength and control. Contrast is introduced rectally as in a barium enema, however a defogram involves the patient actually pushing to evacuate the contrast material as though having a bowel movement.

For me this was worse "pride" wise than the anal manomatry.  Once the barium enema is inserted you're placed on a toilet and there's a camera that can see how the barium is moving and how much you're able to push out.  There was a radiologist behind the wall and two assistance all watching be bear down like I was pooping.

Hope this helps..

Sourbutsweet-

I wish I was closer too.....but its not too far. The results for me were only 1 day and it was just after that I scheduled my surgery. Since all of the testing was done in the building, having results was not an issue. I never waited more than a couple days for anything. If you have any questions or concerns or need a friend if you do have the surgery just let me know....it was not fun, but very worth it. Keep us posted.

LIZzie

Robin.................................................................................. omg..... I really don't know how I would act if I had to poop in front of people. That test seems to take all pride, the little I have left anyway. Wow if I wasn't goin through this I wouldn't even believe these test exist. Ill mention test to doctor hopefully he say I don't need it.....thanks Lizzie................................................................................. I guess were not to far from each other. Some day we need to meet, maybe have lunch or something. I'm going to take you up on your offer, thanks so much your great. I know ill need some help, going through this. And what better help then people who knows me. Lol....

Sourbutsweet.....definately take me up on my offer. I would love to have lunch or even be there when you have the surgery. I do not mind driving....and yes it is helpful to have people go through what your about to. OMG about the defogram is right!!!!! Try it being a nurse in the same company where radiology people go between where I had it and where I work...than it was at the hospital that I had my surgery at (this was the only test off-site) and becuase I had so many complications I was always down in radiology. The worst was when after my surgery I started having some major complications....I was sent to radiology to have my anastamosis (connection) checked and it was the same radiologist (and he was young) and they inserted contrast into my rectum and then I started thrwing up all over the girl tech and had to try and get to the bathroomn with no pants on!!! It was horrible....needless to say I have no modesty left:)

Robin....thanks for all your kind words. I really agree that its nice to have someone who understand what your going through there. My husband had just started a brand new job and was unable to be there a lot. Thank good ness I had my mom and mother in law!!!!

Lizzie

Lizzie..................................................................................of course. I would love to have you here. As soon as I know my surgery date you will know. I had my mind made up months ago about the surgery I'm sure this is for me. Man ol man sounds like you had a time in the hospital. I'm so silly I would have been tryin to hide from people...lol.. Glad you are a success story and my knew friend.

XtremeMisery:thank you for your suppoort and helpful information. I did call Cobra Insurance and unfortunately they said had I been covered prior and then cut off then they could continue covering me, but since that isn't the case they can't. I just need to find a GI clinic here somewhere in NJ or around surrounding states that can take charity care and hopefully take on my case.

Resa: thank you as well for your assistance! I am looking into the county hospitals, but there are few here in the state of NJ...if you can believe that one! I just can't believe that this is so difficult to deal with!

Mom2sophia: Thank you too! I am trying my best not give up and keep looking for some type of institute that will help me!

I tell you though, with all of this just makes me feel like I am never going to get help and that no one wants to believe me and my situation! These physicians take my case as a joke or not a serious matter when it is.

God bless all of you and nothing but the best to all!!!

Robin.....................................................................................you didn't make me feel uncomfortable. It would be kinda weird for me to see these people though. I know I need the test I just don't want to be pushed back waitin for results. Nothin really bother me I just want to get it over wit. I guess I'm kinda in a rush to get to the recovery part and to see how it feel to go to the bath room..... Smile........ everyday I sit here waitin on a phone call. 7 years of c word is along time. I think I'm gonna call today for the heck of it to see if my results or in. Thank you so much your so kind! Hope everyone is well today.....

Mom, I'm so glad that you're feeling better and able to eat more.  I never had any problems eating peanut butter, and had it quite a bit with crackers after I got out of the hospital.  It's protein is good for you.  I wouldn't eat raw vegetables just yet.  Your small intestine is still learning its new functions and they're very hard to digest.  You want to eat lots of steamed vegetables and softer fruits.  If you have to really chew something before being able to swallow it, it's usually harder for us to digest.  I too have problems with drinking milk.  I'm working with a nutritionist who recommended light soy milk to me, and it's really helped alot.  I drink the vanilla flavored and it tastes good to me.  If your stomach is touchy, you might also want to go to a health food store and they have larger plastic containers of rice protein that I mix in a blender with soy milk, yogurt, and any frozen fruits.  It makes a nutritious cold smoothie, and is a great meal.. An extra plus is that rice protein doesn't have hardly any calories and fat, but it has lots of protein which we need so that we don't become malnourished.

Good news everyone!  I learned something new today.  This surgery has been a learning experience for me.  I had an open colectomy for colonic inertia and have a long scar.  My insurance company will pay for cosmetic surgery to make the scar less noticeable, because they consider us to have functional GI disease because our colons quit functioning properly.  I've talked with my surgeons at Cleveland Clinic who did my total colectomy last year and they've given me the go ahead for plastic surgery.  They said that many of their patients move forward and do this, and it's not out of the ordinary; however, he recommends waiting a year past surgery so that everything will have had a proper chance to heal and that most plastic surgeons will ask that you've waited that long anyhow.  For me, my year will be in August and I'm anxious to see what I can look like without my big red scar...  I see a plastic surgeon for a consult the beginning of May. 

Let me say though, my scar is a small price to pay for a surgery that has changed my life around for the better.  Before, I couldn't go to the bathroom for a month at a time and now I can go every day to every other day.  I've started eating raisin bran when I really need to go.  It seems to help me out.  I've lost 85 pounds and feel like a whole new woman.  I'm exercising, enjoying life again, am not sick (after years), and I have a sparkle back in my eye..

I wish for you all, that you will get better and have sparkles in your eyes forever, too! 

Butterfly