TOTAL COLECTOMY PART 36

Hi Allie,

Today, I had my appointment with the chief neuro-urologist in another clinic. I did not expect really much cause I found out that neuro-urologist just don't deal with such difficult cases like mine since they only offer neurostimulation and botox which I am not a candidate for.

However, I was really suprised of his kindness and understanding of my physical and emotional situation but he also pointed out the high risk of surgery in my case due to previous surgeries, small bowel dysmotility, ileostomy (possible short bowel syndrome since 60-80cm are needed to create the pouch) etc.
He did speak very openly which I was gratefulf for and tried to explain the situation the docs are in with me.
Though he was so nice and understanding I first thought that he won't do anything else than neurostimulation. I said that several sepcialists told me that it would be probably ineffective in my case due to various reasons and that I easily get infections which would be even enhanced by a further device in my body. I also told him that even if it worked some (even if I thought about the best effect that is possible it would only be a slight improvement since most of the patients who respond to the neuro-stimulation don't have a complete loss of bladder function which I have. That's why I would still need to do self-catheterization through the urethra, and that is not possible with as the dysmotility also affects the urethra and causes severe spasms there as well))
I don't know why he then began to speak about surgery (and in particular about the even more complicate continent urinary diversion in contrast to the incontinent version where you have to wear a bag which is not that bad but fdiffers much from wearing an ileo bag since the urine is more more aggresive and ther are much more stomal complications) again - if my arguments did convinve him or if my mail I sent to him prior to my appointment to explain my medical and general situation and to show him that I am really aware of the numerous problems that would be involved in a bladder removal with creation of an internal pouch that is made from a part of the small intestine and is catherizable through a valve on the belly.

He then said that I should be aware of all possible aspects which could come along with this surgery. The uterus might be removed as well if the blood suplly is damaged ir if the uterus falls down. There is a chance that a part of the vagina must be removed with this procedure, too. Of course this would mean that I am unable to get pregnant. Even though preganancy, sexuality etc are not an issue for me now due to my serious problems (I even can't imagine to become pregnant in the future; i never had a boy fried so far) this might change when I would be better and find a partner etc....
I have not heard this aspect before, everything else he told me I was already aware of.

So, this was a long and good talk. He did not leave an important aspect but he did not say that he would not do surgery at all. He did say that everything has to be well thought over since this would be irreversible and there are the high risks in my case. Tha's why he wants me to think about the new input at least 4 weeks. He is not in during this time either, and when he comes back I can get into contact with him again.
During this time he will also rethink the talk with me and the situation. He said that his chief doc (from the surgical(oncological section of the urology) would not dare this procedure but he wouldn't forbid the surgery either.

So there might be a little hope for me in this issue, however the endocrine issue is still progressing and this issue becomes more and more frustrating and scaring and debilitating as well. I just can't find an endo who is willing to clarify the problem just becuase I don't have the appropriate outward experience etc.

I hope that you get a little hope for surgery in the near future, too.

SArah

Post Edited (pelztier86) : 8/18/2010 1:36:11 AM (GMT-6)

Lizzie, so good to hear from you!  my dear friend, i will be praying this is the last one. only couple days ago there was someone on the ostomy board saying he had surgery with dr stocchi, sounds like he's a great dr. this time, hopefully, the stoma will be made the right way, and if so, you won't have problems like leakages and skin breakdown etc. i REALLY enjoy my ileostomy, it's the best thing that happened to me, i LOVE it!! i hope it'll be like that for you too. GOOD LUCK!! love and hugs your way!!

cookie, so glad your drs are seriously looking into things and doing their best to help you. having good and empathic drs makes all the difference.

Rottie, im glad you found us too. i was so grateful too when i first found this site, it has helped me tremendously.

Val, if you feel you're emptying enough, then that's great :) lets hope you keep going....... forever and ever and never be constipated again.

lol Rosemary, i don't think it'll be like that for me (the red color), cuz my transit time is so slow, till i get to see it, it won't be red anymore :/  thanks for the suggestion ;)

Sarah, my gosh, so much for you to think of. i'm so glad you had a good appt with this new doc, it's so important the dr is empathic and honest with you. this procedure sounds sooo complicated, i'm so sorry to hear about all the complications involved.. :(  removing the vagina..?? oh poor thing, i'm so sad to hear that. my gosh you're so used to being sick, you can't even imgine your self married and having children.. actually, i can so relate, i've been struggling with my CI for 17 yts (20-37) and during those yrs i couldn't meet guys and go dating... no way, so i can so relate, cuz i don't see how i'm gonna ever meet someone and get married. and after all, i'm not that young, i'm 37 - almost 40, what's left for me..?? i don't feel ready, and when i do, it may be too late..

i hope things work out for you sweetie, i really do, you deserve better. 

Praying for Lizzie now . . . .

Also praying for Sarah and Snuggle - sure hope that your doctors are led to make the right decisions regarding your treatment/surgery.

Thanks for the encouragement and kindness Hodaya. Praying the best for you as well.

Last night I was really brave and had some of my hubby's chili with beans. ACK!! Nuff said about that. LOL

Sarah,

I feel for you. BUT at least this doc was nice about it and didn't say "It's all in your head." So points for him. I really feel for you. But you have a LOT of knowledge that is way beyond most of the rest of us. So I really believe that with the right medical contacts, and the right information, you will make the correct decisions for yourself. Just my opinion, but I think even if you got so much better and met someone and wanted a baby some day, I really think adoption might be the best route to go. After alllllllll you've been through, if it were me I would not consider mixing a pregnancy in with all you've been through. So much can go wrong with that too plus delivery issues. Oh, lord. So I think you are on the right track. Get you as well as you can first, then deal with the rest later. All my best support to you. Rosemary

hey everyone :) this is Futurecanadian... Unfortunately, it won't let me log in. So I had to come up with something else.

I have done several tests. To be completely honest I probably couldn't tell you what all of them are... I just know that all of them came back negative until my Sitz mark test. I had 2, and failed both.

I'm kind of lucky, because as a surgical tech I have a lot of resources that some people wait years to get to. After a few years of dealing with gastroenterologists who will admit something is wrong but have no idea what, a GYN who did a laparoscopy 100% sure he'd find endometriosis and finding nothing, and daily pain and cramping that gets in the way of my work and life, I got so fed up that I literally just stopped a colo-rectal surgeon I work with in the hallway (who, coincidentally, has performed both of my fiance's resections for his Crohn's disease) and asked him if there's anything else I could do. He was very receptive to my complaints, and immediately called his nurse and had me set up for a Sitz mark test. He didn't even charge me for the pill or his services. Within 2 weeks, I had a diagnosis and was told on Monday that biofeedback has proved to be helpful in people with pelvic floor dysfunction, however, the markers were spread throughout my colon, mostly in my descending, and that that's a clear sign of colonic inertia, not pelvic floor dysfunction. My best option is to have a total abdominal colectomy, which will cure the colonic inertia. I know he cares about me as a person, and my well-being is not only important because he's now my doctor, but also because I'm a member of his surgical team and he has invested time, sweat and love into treating the love of my life's disease. People keep telling me to get a 2nd opinion, but he was my THIRD. My other doctor's agree with his diagnosis, so I feel that this really is the best way to go.

I'm just worried about what happens after. Whether or not trading not pooping for urgency and diarrhea is worth it. I'm really praying that it is. And I'm really praying that my body figures out how to cope quickly. I love my job, and I don't want anything to compromise it.

Hi Everyone,

 

Lizzie's surgery is over. Everything went well and there were no problems. Her family can't see her for a couple of hours, but the surgery itself went well, so there are about a trillion praises right there! Keep praying for a perfect and complete recovery for Lizzie, and keep praying for her family as well.

 

Love and prayers,

 

Allie

 

futurecanadien,

I had the exact same worries about going from not being able to poop to having major urgency and diahrrea.  This was really my biggest concern.  I am a child care inspector and am in and out of centers and did not want to have to be in a situation that I had to use the bathroom at a center.  I have not had any problems at all with urgency.  I am able to hold it until I am able to get to a restroom.  Also if I know I am going to be out all day or in a meeting I will take one or two anti-diahrrea pills and then I am good for at least 8 hours.  I really am very happy with the surgery.  If I am at home all day I will go to the bathroom anywhere from 3-8 times a day. I do get up at least once during the night to use the bathroom.  It is still so much better like this.  I can eat and not blow up like a toad which prior to surgery I couldn't eat anything and not be in pain. 

I will be glad to answer any questions that you have.

Jen

Hi All,

 

Here's the latest on Lizzie: surgery was from about 2:07 PM - 6:30 PM, and she was in the PACU from about 7:00 PM - 11:00 PM. Her surgeon found some dilated small bowel near the pouch, so that was removed, and the stoma formed from small bowel that was not dilated. He did find some adhesions, but no more than expected. She is in her room now, but she is in a lot of pain. They are working on getting that under control, so pray that her pain would be relieved. Pray, pray, pray for a smooth and quick recovery and complete healing.

 

Sarah - I am so glad your appointment with this urologist went well. Even though decisions are yet to be made, it makes such a huge difference when a doctor takes the time to really discuss all of your concerns, how they may be addressed, and what possible expectations and complications would be. We are very much alike in the relationship department. I am 24, have never had a boyfriend, or been on a date for that matter. With my GI problems, I cannot even fathom being pregnant. I have always wanted to adopt, so that is the route I plan to take if/when I get married. Do you think you might try the continent version? Did the doctor indicate which option might work the best for you?

 

Janie - Sorry I didn't get to your question earlier! I do have systemic motility problems that were all diagnosed prior to surgery. My small bowel is very slow, so transit time averages 16-ish hours. I am not on Miralax or MOM because they do not help speed things up. They do a great job of drawing fluid into my bowel, so I bloat like crazy, but that's it, and it's so uncomfortable! I haven't found anything that "makes" me go, so I have had to really restrict my diet to avoid things that seem to slow my bowel down.

 

Val - I take a liquid multivitamin, and bloodwork shows that I'm absorbing it. My surgeon said to stay away from any medication, vitamin, etc. that says "sustained/extended/time-released." That is code for a pill that doesn't completely break down or absorb until it reaches the colon.

 

Happy Thursday and prayers to you all!

 

Allie

Great news on Lizzie so far.

From my experience, the small bowel that was dilated was the part that was causing her small bowel obstructions. Sounds like the adhesions that she had upstream from the dilated part was what was clamping off the small bowel that became dilated.

It's like tying a piece of wire around a garden hose and turning on the water. The garden hose that is upstream from the place where the wire is, widens (dilates) as water cannot get through the place tied off with wire. This widened part is the dilated part. I had the same thing. Sounds like she had adhesions that were, as my surgeon said, "just in the wrong place."

GLAD they finally dealt with this. Praying that she make a speedy recovery.

Hodaya,

I've heard from Tracy and she is doing very well.

Rosemary

Sarah - sorry to hear your news. I'm so pleased you've got a doctor who is understanding and who's thoroughly looking into your case. I can empathise with you on how compicated things get when you've got mulitple health problems. Praying for you.

Jen and Allie - thanks for the updates on Lizzie. Really pleased her operation went well. Praying for a smooth recovery.

Snuggles - hope today's been better at work. Praying you get another block of Biofeedback sessions. Your father sounds very similar to mine re: threatening to call the hospital!

Futurecanadian - I understand your fears about how surgery could have a negative impact on your life. Praying with the right guidance you're able to make the best decision for you.

Yesterday, I had my appointment with the Gastroenterologist. He agrees with the diagnosis of Colonic Inertia, Anismus and a Rectocele. We've decided that I now have to try the new drug called Prucalopride (Resolor) alongwith Fleet Enemas, on a daily basis. He said the Prucalopride drug trials have found no contraindictions with epilepsy or epilepsy meds, but I'm getting confirmation from my Neurologist before I start to take it. The smallest thing could restart my seizures, so I have to be super super careful. I'll take this drug for a few weeks then go back for a review, and it's only after that appointment that I'll begin Biofeedback. He doesn't want to start both treatments at the same time, as when I improve (positive thinking) we won't know if it's one or both of the treatments that's working. Makes sense, I guess! Has anyone else tried Prucalopride? I've got a bit more faith in him now, as he has really looked into my case since our last meeting. As well as speaking to my surgeon he's also had meetings with 2 other Gastroenterologist and the Pharmacist inorder to get more info on this new drug. I mentioned the idea of Faecal Therapy and his reply was "I wouldn't touch that treatment with a barge pole!" I'll be having a review with the surgeon next Tuesday, but it looks like surgery is on hold for a while. Really hope this new drug and Biofeedback work, as surgery has to be a last resort for me, as we know it will have a significant negative impact on other health problems.

Tracy,

Those sure seals are great. They are sooooo comfortable. Now I will be able to shower between changes and it will be good for swimming. That hy tape is good, but very irritating to the skin and it's very heavy feeling. Thanks for introducing me to sure seals. See it takes a new ileostomate to teach an old ileostomate new tricks.

Rosemary

cookie, i've never tried that drug, i havn't heard of it before. it's not easy to deal with a complicated condition as CI as it is, so having to take other health problems into consideration on top of it.. i'm so sorry. i hope to hear good news about this drug.

Tracy, i just cannot express in words how happy i am with my decision :) not long ago i used to think it's so the end of the world too, but that is so not true..... it's actually heaven for me! it's very convinient, so easy to take care of, it doesn't bother me, i like it, i love taking care of it, i feel so much freeier (so much more free) and most important - i finally feel GOOD!!!! like i havn't felt in 17 years!!!! i'm just so overwhemled with excitement :) :) :)

i havn't tried the enemas yet, but i want to, i just hate doing enemas YUCK, it's so unpleasant, but the pressure in my lower abd and rectum is really uncomfortable too. i want to try some time next week. how often do you have to do an enema? well i guess i won't need as often as you do since i have only 20 cm of rectum + 10 cm of small bowel, i think once in 4-6 weeks will be good for me. BUT.... i don't know, it just hit me right now.. what if the rectum is even more nonfunctional now more than ever and the enema will stay stuck in there and won't be able to come out....???? :-o oh my gosh, this is stressing me..

SO happy for you hon, that you can finally eat well and not feel sick! yeah! i now also can eat more variety of foods, compared to what i could before the ileostomy and am loving it too!! :) feels like a miracle, doesn't it? but i still get constipated SO very easily.... like if i eat just few bites of rice, i get a blockage for sure, so i don't touch it. i just tried one bite of rice few days ago and got the blockage like cramps again :( also, i don't dare eating bananas, salads, peanut butter - i'll be totally plugged. oh and cottage cheese... OMG... just 2 bites of that sends me strieght to the hosp with a blockage. but still it's a huge improvement and i can eat so much better now, my list of allowed foods is much bigger now :)

i don't take any protein powder or a multivitamin. did your dr tell you to take those? my output is thick, so i guess i don't need vits, cuz it seems my absorbtion is good, right? what d'you think? but why do the vits make your output thick..??? i don't like that, and if i took it, maybe i'll be totally constipated, cuz my output is already thick. oh no, i'm not taking any vits lol...

i've been using hollister the whole time, and actually havn't tried any of the others. BUT i tell you, lately i've been changing wafers like crazy..... it's unbealievable! i dont know if it's the humidity or what, it just peels off after only 2 days!!!! yesterday it just fell off during the shower.... ugh! so i don't know, you say coloplast's doesn't stick good on the skin? cuz i was thinking the opposite, since hollister's wafers keep falling off so soon after changing, then i had hopes that maybe coloplast's are more stable.. coloplast are sending me their stoma nurse to guide me with thier equipment. oh well will see if theirs is more stable for me :/

but anyways, i also talked to hollister's stoma nurse and she offered me to try the wafer that has all of it's surface sticky yellow - you know which one i mean? she also offered me to use the adhesive spray, the one that strengthens the glue to help the wafer stick to the skin better - you know that one? i just tried it for the first time yesterday, so will see how long it holds on this time.. it does look more stable than the regular wafer and the adhesive spray seems to really help the wafer stick better, but will see, only time will tell AND showers - how it acts during the showers. also, my sister is sending me the sure seals, so if nothing helps, then i hope sure seals will. but all in all, i must say that all of this is peanuts for me, cuz it's managable, i mean, even if i need to change the wafer every other day, it's still SO much better than before, cuz it only takes 10 minutes, and 10 mins every 2 days is NOTHING compared to 3 hours every morning and on top of it feeling still bloated and lousy for the rest of the day and not being able to eat..... 10 mins every 2 days is super ;) :) :)

oooooohhhhh.... i'm SO proud of you, girl, for staying off the cigs.... not like me :/ have i told you you're my hero? i hope to be able to do that some day too.

Jenise, i'm glad you're feeling good, i'm sorry tho you still have problems going. let me tell you, an ileostomy is heaven!! i'm so comfortable with it, it's amazing, i never would have thought i'd be so happy with it. this is as best as it can get. and i don't have to deal with pelvic issues anymore and i know for certain that if i had stayed ileo-rectal anastomosised, my bladder and vagina would have been damaged in just couple years, so i think the ileo saved me from damage to my whole pelvic. i really think you would also feel so much better with an ileostomy. but i know how drastic it seems, so i can understand ppl's fear from it. but it's really not such a bad thing at all.