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Posted 6/27/2012 12:25 AM (GMT 0)
It's been almost two years since I had a subtotal colectomy so I thought that I would check in on the progress of anybody else who has had the surgery for colonic inertia and to reach out to anybody who might have questions.

My surgery can be counted as a success although I have to deal with many things that I didn't have to before. I cannot eat fruits, veggies, whole grains, nuts . . . anything with much fiber . . . without have diarrhea. Other than that I am more than grateful to have my life back.
Posted 6/27/2012 12:46 AM (GMT 0)
Val,
(I think it's Val)

I remember you from the boards. I haven't been here in forever, but just checked in and saw your post. I'm glad your surgery was a success; I had a total colectomy 3 years ago, and while it wastechnically a success, I also have to deal with things I didn't have to before.

I still have trouble going, so I take miralax in the morning and evening. If I don't take it, I can feel the food just sitting in my rectum. I have pelvic floor issues, so that's my problem. I also think my small intestine is relatively slow. I am much better than before surgery in one way, but in another things are still not great.

If i eat veggies, fruits, etc I have a hard time passing them. I may see them the next day still in the form I ate them in (sorry for too much info). If I eat thick crust pizza or large amounts of bread, cake, etc. I have more trouble than usual passing it. I've gotten in the habit of not eating until later in the afternoon/evening because if I do, I have terrible rectal pressure until I either do an enema or take my miralax and start going.

On a day to day basis, I'm pretty good. I've learned to deal with it. The real challenge is when I travel. It's just difficult to be on vacation (especially cruises because we used to love to cruise) and not eat all day. Even with these issues though, I feel better than before surgery and the days/weeks of not going even after taking huge doses of laxatives are behind me forever I hope. If miralax ever stops working though I'll be in trouble!!

Good luck, hope one day your body will adjust to those veggies and fruits!!

Janie
Posted 6/28/2012 1:18 PM (GMT 0)
Hi

Well you may remember me too.  Glad your surgery worked out, i cant understand why mine did not.

I had surgery - twice - and i am due to go back to the ileostomy next Tues 3 july.  My reversal did not work out and my quality of life as such is no where 100% like it was with the ileo.  Been a hell of a ride but i hope this will be the end of it all. 

Posted 6/29/2012 3:49 AM (GMT 0)
Janie - I remember you very well and am glad that you still visit the site here. It's wonderful that Miralax is working for you and hope that it continues to. It seems that we all have to adjust to new sets of problems or inconveniences. Hopefully, your problems won't get any worse than they are now.

Please stay in touch.

Val
Posted 6/29/2012 4:08 AM (GMT 0)
Oh Karen, I'm so sorry that your surgeries haven't worked out for you. You are still having the inertia problems? Or have the surgeries caused other problems?

July 3rd is almost here. Please keep us posted, will you?

Val
Posted 6/29/2012 9:42 AM (GMT 0)
Thanks Val. Glad all has worked out for you. No the temp ileostomy was the only time i felt well. It appears that i have outlet rectal issues and may be other issues. I was never told this, and had i known , then I would not have chanced the reversal.

Also last year the head of the team changed so i have a different consultant/professor who said he would have done a different surgery altogether to the one i had e.g. he would not have removed my large bowel but just given me an ileostomy - hence i woudl not have had the reversal! And to add insult to injury he just gave me a lot of doom and gloom in respect of performing another ileo procedure on me saying it might not work etc... and i said well thanks a lot for no one informing me of this before reversing me"!!!!!!! or words to that effect. He also said he and my previous consultant had different schools of thought on this matter because some patients with outlet issues do okay. But i did not even know i had them, but may be i just put it to the back of my mind cause i didnt want to have them.??

So here i am again with no where to go but back to the ileo. I cannot go to the toilet without forcing the issue i.e. with prune juice twice a day and it has to be timed correctly at the right time of day etc etc. and it bloats me (i get bloated anyway). Plus it sometimes does not work very well and i am in pain. I am always aware of my guts. If i did not take it then i would still be in the loo several times a day but straining - and that is no good to my pelvic floor which is weak, plus no good on the abs that are weak also.

I hate drinking it, and i worked out it equates to an extra 2,000 calories a week so not good for my health either. so it has taken me a while but i have to do this cause my bowels have taken over my life again. it scares me to have to go through this again and i have no idea what side it will go either.

sorry for the long reply!

xx
Posted 6/30/2012 10:48 PM (GMT 0)
Val,

I do check in from time to time, so hope to see you around again soon. I think I'm going back to my surgeon soon to see if my rectocele has gotten worse. He thought about trying the STARR procedure, but I'm so afraid it will make thinks worse.

Karen,
I'm so sorry for your problems. I hope you're able to have the surgery and it will work well again. I've always said that if the miralax ever quits working I'd have to have an ileostomy because I could never pass anything without it. Before I started taking it (about 5 months after surgery) I was also drinking prune juice twice a day. It worked somewhat but miralax is much better for me, although about once every couple weeks I also have to drink some prune juice. I think my bowels will always be something I constantly deal with...and to be honest, it just ticks me off. How can something so simple as pooping (for most people) be so difficult for some of us. I know there are so many people so much worse off than I am, and I'm truly grateful for so much in my life, but this pooping stuff is for the birds!! LOL
Posted 7/1/2012 1:34 AM (GMT 0)
Hi Val,

Remember me? I had to have a permanent ileo due to damages from the GYN surgery that included a sigmoid resection that on review of the scan did not even show a sigmoidocele hence the removal of my sigmoid, then anastomosis stricture, then ended up with ileostomy? Well 4 good years and lots of travel and dancing on cruise ships and you know what happened? This March my stoma developed a fascial level stenosis, swelled up and turned dark red and the hole disappeared. 3 freakin' months in and out of hospitals, 12 IV's 6 hospitalizations, 3 negative tests and the place where I got the original ileo the successors for my ileo doc who retired was just going to let me drown in my own poo. SO I went farther away and was taken in June 4 for urgent stoma revision due to severe stomal stenosis (NOT A BIG SURPIRSE!!!) Done local to the stoma with laporoscopic take down of adhesions off the ileum. In hospital only 3 days this time instead of a month (no post op ileus this time YEAH!!!). PRAYING TO GOD that this new stoma lasts and that I do not stricture in again. Ready to get back traveling. Am still in a fair amount of pain that neither the doc nor I can figure out. BUT he said in 2 or 3 months this should subside. It is near the navel where the port was put for the lap adhesion lysis. What a time! Then as I had to have IVs so long my veins collapsed and I got an ultrasound of my arms. Seeing a vein doc this week. Jeeze. glad to hear from you and that your colectomy worked.

Karen, Good luck with your new ileostomy. Don't you just hate it when you don't get all the scoop ahead of time prior to making surgical decisions. Guess it is the same everywhere.

janie, Glad you are still doing OK with the Miralax.

Rosemary
Posted 7/1/2012 2:47 PM (GMT 0)
Val, it is so good to hear about success stories :) well, i'm on the other side of the statistics unfortunately. as you know, it didn't work and i now have an ileostomy. but i'm very very very happy with it and i'm doing just great!

Janie, Karen, we havn't talked in so long.. Janie, please don't do the STARR! i had it and it only made things worse! one of the horrible complications of this surgery is perforation of the rectum. i have a perforation and the rectum and mucous that builds up in my unused rectum passes through that perforation into my vagina and causes me repeated UTI's. i've had 7 of them in the past 2 years, it's aweful. i really don't recommend the STARR. it is good to hear that since surgery you're still the same and i recommend you keep it the way it is.

Karen, praying all goes well for you soon hon!! i also don't visit here so often anymore, but like to check in sometimes :)
Posted 7/2/2012 7:39 AM (GMT 0)
Hi, I haven't posted here in a LONG time, so I had to change my username because I forgot my other one lol.
Anyways, I had a total colectomy when I was 13 due to colonic inertia, I did ok for a while, but I ended up getting rectal inertia, and had my rectum removed at 16, then when I was 18 I got small bowel inertia and had to have an ileostomy, which I still have, I am 30 now.

I hope you all are doing well, I'll try to post here more often. :-)
Posted 7/2/2012 9:56 AM (GMT 0)
Janie it is true - how can the rectum be responsible for such grief!!! My surgery is tomorrow 3 July - i go in at 7am. Right now (in the UK) it is 11am as i type. no idea of what time zone everyone is in.

So the day dawns and i just hope the stoma is a good one. Good to hear from all those who have had CI surgery as dont get many on here these days. No janie STARR does not help people with outlet dysfunction. i had STARR and i had no resolve (fortunately no complications though).

keep in touch all xx
Posted 7/2/2012 7:41 PM (GMT 0)
Hodaya and Karen,

thanks for the advice. I do har a rectocyle and I was going to see it may have gotten bigger. Did either of you have rectocyles? I don't remember:(
Posted 7/3/2012 4:02 PM (GMT 0)
yes, i had a rectocele, but the bigger problem was a significant internal prolapse of the rectal mucous that blocked the whole way out. i forgot the name of it. Tracy gave it to me once, cause she has same problem.
Posted 7/3/2012 10:58 PM (GMT 0)
Hi Hodaya, Janie, Val, Rosemary, Karen,

I havent been on here for a very long time and I thought I would check in to see how people are doing...Its good to see your familiar "posts"...so glad to hear that things are going well for some of you...my subtotal has been good...I'm just starting to eat fresh fruit...still cant eat veggies, nuts, seeds, etc...I am very anemic and have to get transfusion periodically...drs are trying to figure it out but since the septic shock some things in my body have just done their own thing...lol...

Its really good to talk with you all again...Ive missed the connection we've had...I wish you all the very best with your proceedures and surgeries...you will always hold a special place in my thoughts and prayers

Peace and Prayers,
Judy
Posted 7/3/2012 11:40 PM (GMT 0)
JUDY!!!

I've been wondering how you've been, but I couldn't remember your screen name to ask about you!! How are you? I know you had so much trouble for awhile....are you doing ok? Looks like you're typing well! How about your girls? How are they? I've thought about you so often and so nice to hear from you.

Janie
Posted 7/4/2012 1:49 AM (GMT 0)
Judy,

Great to hear from you! Just this weekend my NEW stoma started having issues!!! At today's change part of it has scarred right down to the skin flat as a pancake reducing the part that can pump out poop. This after only a month. I cannot believe this. Had been on IV's for 3 months trying to find some help as my original stoma which had been fine for 4 years stenosed. I finally found help June 4 and all was good for about a month, now this. Glad to hear your stoma is doing well with all your other health issues. I hope your other issues get sorted and you are well again someday. Great to hear from you. Rosemary
Posted 7/4/2012 2:08 AM (GMT 0)
Karen - Thinking of you and praying for you. I sent you an e-mail. Hopefully you will receive it when you get home from the hospital. Sending hugs your way.

Rosemary - It's good to see you here! But my goodness, you sure have been through a lot. And now you are having trouble with your new stoma! What are your options now?

Janie - You aren't going to have the STARR procedure, are you? So far, I haven't heard of anybody being pleased with the outcome of one of those.

Hodaya - I'm so very grateful that ileostomy is working well for you. It's good to see you here too.

Judy - You are able to eat fruit now? That is fantastic! I've found that I can have a bite or two of most anything. Tonight I had two pecans . . . they tasted heavenly. :)

Shy Ann - What was your old user name? Do we know one another?

Well ladies, I've got to say that it is wonderful catching up with you and I want each of you to know that I don't want to lose touch again. Just because we have had surgery doesn't mean that our journey to good health is over. If we cannot get together or keep up with one another here, I'm all in favor of finding another venue. Please let me know your thoughts on this.
Posted 7/4/2012 2:43 AM (GMT 0)
Hi Val,

I don't know. I have no clue how many times a stoma can be redone especially with me being a scar tissue former and am still in post op pain somewhat plus my veins are still collapsed from all those IV's.

I have also heard nothing good about the STARR procedure. My original ileo doc who made the stoma that did last for 4 years at least, told me that the STARR did not work. Though his stoma stenosed after 4 years, I do respect the guy and his opinions. Just sharing what I have heard. Never had the STARR so I am no expert at that.

Great to be together again. Rosemary
Posted 7/4/2012 3:58 AM (GMT 0)
Rosemary, try a convex wafer and see if this will make it stand up. I have issues with the top of mine shrinking down, but wearing the convex wafer makes it stick up more.
Posted 7/4/2012 4:05 AM (GMT 0)
Hi Tracy,

My stoma is sticking up just fine but half of it has collapsed and is right on the skin and there is no poo coming out of the part that is collapsed and on the skin. The part that is putting out poop stands up just fine. Prior to this weekend the whole thing was putting out poop. I am like WTH????? Thanks for the suggestion though. Rosemary
Posted 7/4/2012 10:50 AM (GMT 0)
WOW Judy!! so good to hear from you! i remember you had such a rough time with many issues and i hope you keep improving. so sorry to hear about the anemia. i also miss the conection we've had, i think we all share a very special bond and i miss that special time when we talked on here so much. the support of our groop was amazing!! i love all you guys, will never forget you and you all will always have a special place in my heart!

Karen, i just now read you've already gone to surgery.. wow, i wish you all the best! hope all goes well and the new ileostomy works great just like the previous one! please update us as soon as you're able to. thinking and praying for you!

Val, congrats on the 2 pecans lol :) and Judy so glad you can eat fruits now :) i agree Val, we shouldn't lose conection. i think one of the ways to keep in touch is facebook, do you have a fb? my name there is Hodaya Leah Cordoba, would love to see you. and we can also keep in touch on here. yes, we all still have issues. the surgery we've had is a very big one and it's rarely a perfect fix, and it also affects our body in many ways, so yes, all of us still have issues. about 3 weeks ago i had my first blockage (1st one since the ileo op 2 yrs ago). having one after 2 yrs is normal and no biggie considering. i still need prune juice and fresh sqweezed pear juice to help move things. can't eat too much solids or i get really bloated. but i manage now best i have in so many yrs before the ileo and i'm grateful for being able to live life a lot better then before. i've started a new route in life and i now study dental assistent and i love it.

shy ann, hey, i'm pretty sure i know who you are through your story.. Dusty? am i right? :) how are you doing sweety????

Rosemary, i hope all is ok with your veins. about your stoma, it is normal for the stoma to shrink and change shape after surgery. after surgery the stoma is bigger b/c it is swollen from surgery. then gradually the swelling is supposed to go down and thus the stoma shrinks and it also chages it's shape. it can keep changing even after 6 months. that's why it's important to messure the size of your stoma evry time you change the wafer in the first few months post op in order to cut the wafer the right size. what happened to you is exactly what happened to me about 1-2 mons post op, that the lower half has collapsed and is right on my skin too! boy i was freaking out b/c of it!!! i thought the stoma is all ruined and all kinds of thoughts went through my head... but it's ok and it's normal!! the convex wafer does help a lot with it. btw, Judy doesn't have a stoma.

always good to talk with you all ♥♥♥
Posted 7/5/2012 8:03 PM (GMT 0)
Hi everyone!

Its so good to be connected with you all again! Ive really missed you all...My girls are doing great...I spent 4 months with our youngest daughter in myrtle beach this past winter...i had to stay out of the cold bc of my finger & toe circulation & i had to stay away from people with colds & the flu..i am finally able to go out in public with caution...its been great after spending this past year in "isolation"...i just got finger tips for my fingers but am getting a few adjustments done to them...they are quite cool, they are silicone & stay on by suction.

Hodaya is right, i dont have a stoma...i used to have excessive diarrhia until i got sick & was on atibiotics for 3 1/2 mos...now i usually just have it about once every 10 days or if i eat something that doesnt agree with me.

I would love to keep in touch either here or on fb..my name on there is: Judy Smith (Ploutz).

Love and hugs to all,
Judy
Posted 7/5/2012 8:54 PM (GMT 0)
I'm not real sure what my old username was, it may have been shyann or something with Ann in it, my real name is Dusti, some of you may know me by my real name
Posted 7/6/2012 11:24 AM (GMT 0)
Dusti - I love your siggy.

Thank you for sharing your contact information on Facebook, Hodaya. If any of you would like to contact me, my Facebook name is Valda Steiber.
Posted 7/6/2012 6:43 PM (GMT 0)
HI ALL-IT HAS BEEN 6 MONTHS SINCE MY SUBTOTAL COLECTOMY-WANT TO THANK VALDA AND HODOYA FOR HELPING ME THRU THESE MONTHS WITH ADVICE ON FOODS,ETC. AT THE MOMENT I SEEM TO EAT ANYTHING-THOUGH SOMETIMES I THINK I MIGHT PAY FOR IT A DAY OR 2 LATER. NEVER QUITE SURE SO I JUST EAT STUFF ANYWAY. IT IS SURE DIFFERENT THAN BEFORE THE SURGERY-I FEEL TOXIN FREE FOR THE MOST PART. ONLY WISH THAT THE DRS HAD TAKEN THE GALLBLADDER I WAS TOLD 2 MOS AFTER I NEEDED OUT DUE TO A LARGE GALLSTONE AND THAT MIGHT ME FEEL EVEN BETTER. HAVENT SCHEDULED FOR THAT PROCDURE YET. TIRED OF OPERATIONS....ANYWAY-ALL OF YOU HANG IN THERE.
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