TOTAL COLECTOMY PART 31

Hi Gilda, I wrote down every word from your above post. Thank you for all of this information. I knew I would be missing some vitamins, but had no idea how many until your post! I'm sorry you have been feeling so sick. Are you able to work when you feel this bad? I am trying to determine how long I will have to be off work. I will call and ask my surgeon if my ileo-cecal valve because I have no idea. I am still having mostly diarrhea, but I am afraid to take anything to slow it down because so many have ended up with constipation again. I think it was Hoyada who was wondering why so many people lately have ended up with constipation issues again. I wonder if some of it could be because of this ileo-cecal valve you speak of. It would be interesting for each of us to find out if this has been removed or not and compare it with our current bathroom issues. I wonder what doctor I should discuss all of these vitamin issues with. I don't currently have a family doctor, because the place I used to go to keeps changing the doctors. I just got so tired of starting all over with a new doc. each time and then explaining to them about my complex body. Most of the time I have to not only tell them what I have but also explain all of the specifics as well. I know eventually I will have to get another doctor maybe, an internist, but I am going to go somewhere with an established long-term doctor.

Thanks again for taking the time to explain all of this to me! I hope you continue to feel better each day. Do you have any other health problems in addition to your colectomy?

Kristen

Hi Lizzie, I am so sorry that you are so very ill right now. I have been where you are and I really thought I would die, or at least I wanted for it to just be over! It is such a scary, miserable time but please have faith that it will end! I think that soon you will start to feel some improvement each day! It may be kind of a slow recovery but it will happen. One day soon you will actually be able to smile or laugh again and you can start to put this nightmare behind you. If you ever need anything I am here for you; please let me know! I know that sounds odd coming from a stranger but I have been where you are and I desperately needed help and got none. Now I am quite a bit better and I just want to help others who need it. Hang in there Lizzie, you will get better!

Gilda

Lori, thanks so much for the diet info with the various pouches! but i'm a bit confused... if i understood it correctly, someone with a k pouch has a very restricted diet cuz it gets obstructed easily and someone with BCIR can eat anyhting they want? but as far as i see, they do the k pouch and noone does the BCIR anymore..? or did you find someone who does the BCIR? i need to google those two and learn more about it and the difference between them, just don't have much time lately to do that. Kristen, yes it was me and Lori who wondered why most of us are still having constipation issues even after having our whole colon removed. we're just so disappointed.. :( i wish i had diarreah like Gilda. anyway, i also asked my surgeon about this valve between the small intestine and the colon, and he said this valve is gone. i also asked another surgoen and he sais this valve is usually removed with colectomies, so i'm pretty sure yours is removed too. Lizzie, it was so good talking to you earlier :) i hope you get better soon, you've been in the hosp for so long now, it's no fun, i know.. hang in there honey. all of these set backs will clear up soon. and you have all of our prayers with you always!! you're a wonderful person and we all love you very much!!

Lori, but the BCIR is supposed to provide a better quality of life, wouldn't that be a good enough claim to have the insurance approve it for you, if you decide you prefer the BCIR? with which can a person eat better, with the k pouch or with the traditional ileostomy?

HELP!

If anyone has any idea what is going on with me please let me know. I started having pain last night when I went to urinate and gently push to she if I needed to have a bm. When I did this the pain increased. So, I stopped and went to bed. I woke of this morning in terrible pain. It is constant pain in my lower left pelvic area and increases when I try to go to the bathroom and when I gently press on my front lower pelvic area near the bladder and ovary area (I do not have any ovaries). When I try to sit down initially it hurts terribly and then after a few minutes as long as I hold completely still it decreases the pain and goes back to the constant pain. So, I guess I am having constant pain aggravated by the muscles perhaps on the left side, it think. Is there where you would expect to have pain from the small intestine being attached to the rectum? I am afraid that something is going wrong with the connection like I ate something and it is stuck there or something has really inflamed this area. I did have 1 formed stool that was almost circular and flat followed by diarrhea.


Has anybody experienced this or have any ideas what it is?

Thanks!
Kristen

Hodaya, by the article that I read, a person can eat better with the BCIR procedure.  I don't know anyone who has had the procedure to ask, but at www.bcir.com there are lots of patient testemonials.

 

When I was reading about the Olympia Medical Center in Los Angeles, it said that they would actually speak and write to your insurance company to try and have the BCIR procedure approved.  Another plus that I read is that ileostomy supplies for the rest of your life are very expensive, however the catheter tubing used for K-pouch or BCIR does not cost much.

 

I don't think that it's good enough to convince some health insurance companies automatically, though.  I think that is what happened to Lizzie.  I could be wrong, but I think that her first choice was a BCIR in St. Petersburg, but her insurance company went with a K-pouch at Cleveland Clinic for her.  Insurance is not always on our side, unfortunately.

 

answers4meTDR, I agree with everything you're saying.  I think that Lizzie was very smart to research so much regarding the k-pouch and BCIR as alternatives, and I hope that soon she will be recooperating and can teach us all about her experiences.  I would like the BCIR, but am not even sure if I have the opportunity to have one after all of the problems with my small intestines last summer.  In March I am going to have a discussion with Dr. Wexner at Cleveland Clinic about it and whatever he recommends is what I'll go with.  I trust him.

 

I hope that biofeedback helps you to feel better, but if it doesn't work, at least you have alternatives, too.

 

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

I am anxious tonite. I have my fistulagram at the hospital tomorrow and have to be at the hospital at 7:30 in the morning. I can't drive afterwards and my husband is going to be with me during the procedure. I'm hoping that it's over by lunchtime and I can talk him into taking me to Pizza Hut for their buffet. I love their cheese sticks and sauce.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

answers4meTDR, you are so right.  Anything has to be better than my leg bag.  I can't wear most of my clothing.  I work in an office and cannont wear slacks or shorter skirts.  My leg bag goes down to my knee.  I've worn sweatpants with pretty sweaters or blouses since fall, and I do have a couple of longer skirts.

 

My leg bag has had some unwanted effects on my body image, too.  My abdomen looks mangled from surgeries and when my bag fills up it is very noticable.  It's like a balloon and makes noises. 

 

I am seeing a counselor and he's trying extremely hard to get me thru these rough spots.  It is good for me to talk with him, especially when I'm stressing out.  My last test, 2 weeks ago, they wanted to put a tube down my nose, and I started crying and so they made me drink 3 barium enema glasses instead.  Then, last week I had an obstruction that wouldn't come out and it freaked my husband and I.  And now I have another test tomorrow and am unsure exactly what it entails.

 

Yes, I pray that I am able to have BCIR surgery.  If you log onto www.bcir.com you can have an educational packet mailed to you and it has info, test studies, a cd, and previous patients that you can contact in it.

 

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

Kristen, I can tell that you are so scared because of the pain you have been experiencing in the last week. The main thing I want you to know is that I had several times in the first 6 months after my surgery when I became extremely concerned because of pain, feeling very weak, etc.. I am not saying that you shouldn't be concerned. I am just saying that things do get better! There will be times when I will post and will probably be depressed or scared (even tho I am 10 months out from my surgery). What I do know though, is that . . ."over time, many issues have resolved themselves." One really weird thing that I had "going on" for several months after my surgery was some leakage that looked and smelled like water (no smell) that kept appearing in the late morning in the area of my low back. This liquid was not coming from any "natural opening," it seemed to be coming out of my skin! I went to 3 doctors about it and they said they couldn't figure it out, that maybe a sweat gland had been cut?! Whatever, this has now stopped completely! I know that sounds weird and it was scary for me. I am just glad that in time, this condition cleared up all by itself. I do think you should keep consulting with your doctors but also know that your body has been thru an awful lot! Give your body time to heal itself and try not to worry too much.

Take Care,
Gilda

Kristen, since you are still in the post op stage, a visit to your doctor should be 100% covered in the cost that was already covered by your insurabnce. I think it sounds as though you should have this pain and feeling looked at. I have had rectal surgery (2 rectopexies and rectocele repair) and you would think I'd feel something in the rectum (pain wise) and I don't. I do feel pressure, but I know Janie and maybe a few others feel that too. I have some bladder issues and right now - I think my last surgery has done something to my bladder. I get sharp pains (stabbing) in the bladder, and my flow is weak.. and drizzles outs at the end.. but I can tell, like you, the difference in the bladder and rectum area - and you sound sure - so call your surgeon!

Butterfly, you must be at the hospital by now awaiting your test! Good luck, and let us know how it went and what was done! Glad hubby was able to go with you too for support. I hope that you are able to eventually have surgery to rid yourself of the leg bag.. I totally can understand having to seek help in coping with your issues.

Glida, I hesitate to call my doctor for new symptoms.. and I know hey did say that it could take up to a year for total recovery, and end results. It's good to know that you over time improved. I need to get my surgical report as I don't know exactly what they did. The last surgery I had, I requested the reports and it didn't seem to give a lot of 'fine' details.. I wonder if the doctor keeps separate records then the hospital does.. ?

Lizzie, you continue to be in my prayers, that you'll have a successful outcome and be able to return to living life soon! Hope that the fever has broken.. and I always look for your updates!

Jen, did you call the doctor? Please update us.

Tracy, did you find through your research if the BRIC or K-Pouch are for people with pelvic floor dysfunction? I'm being to think that part of my issues that I have is from my pelvic floor condition. I really don't want to go back to the doctor's.. but I'm giving myself a few more days and trying different things to see if I get more relief. I haven't even told my family, except hubby - as I don't think they understand my struggles.

Rosemary, where in the world are you today!? I'm trying new things to see if things get better with me, and if they don't by weeks end- I reluctantly will call my doctor. Yesterday, I went without a laxative... but not too much, and all stool was thin and hard to get out. I had to make 3 trips, within an hour.. but at least I went. My stool is still very soft, no form, and maybe this could be the reason..? I decided to stop the miraLax and take citrucel just to see.

Janie, Judy, Amey, Hodaya, Marissa - waving hello to you all!

Lizzie, it is wonderful to hear from you and I am so glad that your fever has came down. Maybe you're finally going to get better and I really hope that you'll be able to bust loose of the hospital and be home for the weekend. When you feel better, I have so many questions for you. All of your research has paid off and I'm trying to, too. I guess you do have to go with your gut instincts with these surgeries. After all, we have to live with our decisions, right or wrong. And they are difficult decisions to make.

I just got home from the hospital and the radiologist told me that everything looks good, so I've had 3 tests and have done well with each of them. I'm finally feeling more confident about my small intestines being healed, and am so looking forward to seeing Dr. Wexner next month.

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

Janie, I hope that you're able to relax on your "mini vacation". It's no fun having to worry about our bathroom issues all of the time. Maybe, your luck will hold out for tonite.

It is cold and wet in North Florida, too.. I'm missing our Florida sunshine.

Yes, I am positively giddy that my 3 test results are all good. Only 1 more test to go on February 16th. I've been so worried about my intestines healing, and not really knowing anything. It was really good to speak with the radiologist today.

I'm hoping to get rid of this leg bag, and am really hoping that Dr. Wexner will say something positive about the k-pouch or BCIR. If not, I think that I'll be able to live with an ileostomy.

I submitted all of my medical records to Palms of Pasadena Hospital (St. Petersburg hospital that does BCIR) last week and am waiting to see if they think I could be a candidate. My husband does not want to talk about it and believes that I should have the Brooke Ileostomy and not consider anything else. He has been thru alot with me and I can understand his feelings, too.

butterfly
----------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

I spoke with the people in Fl about the BCIR....she said I sound like a good candidate....which I pretty much figured.


Now I have to get all my medical records together and mail them to them so the doctor can look them over.
I told her I want this surgery because of my quality of life. I am sick and tired of living like this and I prefer one
surgery compared to a temporary ileostomy, take down, then will eventually end up getting a colectomy with
permanent ileostomy because my rectum does not work.

Butterfly, when are you hoping to have your surgery? I am shooting for June....we may be in there together...
which would be great because I will probably be alone after the 3rd or 4th day. And she said 21 days minimum.

My husband is all for it and wants me to get some relief. But my mom is against it. I am not even going to tell
her anything until I have been approved, insurance has approved the procedure, and I have a surgery date.
The place is 8 hours from my house....not as bad as I thought.

Do ya'll know if I can call the doctors office and ask them to get the medical records ready and I can pick them
up and sign a release? I have to get the records from 6 doctors. UGH