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Total colectomy 2011.2

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Posted 3/20/2011 10:54 AM (GMT 0)
Jennise...... yeah it's been so long, missed you girl! wow all of those pelvic issues are so complicated and the surgery you're about to have. you've been through too much, i hope and pray this one will really be the answer for you.

yes i'm having some problems, but no im not having any surgery, at least not any time soon. as you know, i have a loop ileostomy now. but it seems my small intestine is really slow, i mean if don't drink lots of prune juice every day, nothing hardly will come out to the bag. it's amazing, cuz i can eat a liquid diet and still almost nothing will come out :( i'm def very frustrated about this. but i manage with prune juice. pear juice (fresh squized) seems to help too. it has the same laxative affect just as prune juice, at least for me.

i also have severe anismus. my rectum produces lots of mucous, but i cant expel it at all. i do enemas, but they dont help much. it's really a pain.

i don't have smelly gas. with no colon i hardly have gas at all. well some foods can give me extreme gas, like peanuts, beans and some cooked vegies and fruits. i'm very limited with what i can eat, but im better than before the ileostomy. i'm very weak all the time, maybe i should ask my dr to check my b12.

good to hear from you Jennise and i wish you the best of luck with your surgery, hopefully it'll be the last one.
Posted 3/20/2011 1:01 PM (GMT 0)
did they find out you had a slow small intestine before your colectomy, or did it develop after? DO you think it was because you had to starve so much??

Dont some people go home before they have even had a bowel movement. After they can handle food, pass gas, and not bloat up you can leave right?


I wouldnt call what I had a bowel movement. It was just blood from the surgery and some coloring/dye. The nurse practitioner I saw said it was normal, but wasnt an indicator like passing gas is.

Oh no, here comes the nurse to take out my catheter again:P Lets hope I can start peeing again!
Posted 3/20/2011 4:34 PM (GMT 0)
boat, don't let them release you before you had your first real bm! that's very important! you have to make sure your bowels are working, otherwise you're taking a chance of might needing to come back. go very slow with the food, start with only liquids first, see how it goes. when they tell you to eat, eat only small amounts and chew chew chew!! don't eat fiberous foods, no fresh fruits and vegies at least for the first few mons. did they give you the list of low residue/low fiber diet?

they didn't test my small intestine's motility before my colectomy, we don't have that test in israel. but i think it was slow even before the surgery. i don't know, is this thing about not eating proven that it can damage the motility?
Posted 3/20/2011 5:28 PM (GMT 0)
Hi guys!

I found this thread using google and it's very informative! I have been struggling with constipation for 4 years now, and even with over fifty times the maximum laxative dose a day it takes hours of 'working' to have a movement.

However, I am from Europe and in my country they don't perform subtotal colectomies, or any colon surgery whatsoever. I really feel like it would be such a relief - the laxative overdose makes me feel absolutely terrible! I had to leave school because of it and it ruined my youth. sad

Anyway.. are all of you guys from the USA? Is it possible for a foreigner to come there for surgery? Or any other country that you know of? I can't go on with this for the rest of my life, but in Holland where I come from they can't help me anymore.
Posted 3/20/2011 6:15 PM (GMT 0)

Hi Everyone!

 

Boat, way to go! I am so glad to hear things are going so well. It took me a good 4-5 days to even be coherent, and my bowel didn't even hint at moving until day 8 or 9. I'm impressed with how well you are healing...praying all continues to go well! Rectums are always left in- they are the storage reservoir, and without them...well, you know. Urinary retention is pretty common post-op; I believe I had a catheter in for five days, but part of that was because they were doing controlled urine testing because I was getting TPN. There will be good days and bad days, but I'm sure you will do great. But, no, patients aren't discharged before they have a BM and usually you're pooping a little before you can eat very much.

 

Rosemary, enjoy your cruise! And take pictures!

 

Lizzie is doing pretty well! She has been able to eat more on her own, so she hasn't had to run tube feeds every day. She has also been able to start exercising again...it is such great news that she is feeling up to it!! She had some urology testing done last Thursday; please pray the doctor knows just what to do and that it's nothing that requires any type of surgery.

 

Say a prayer for Sarah...she is having a ton of nerve pain.

 

Jenise, many prayers for you! Marisa, so glad the domperidone is working for you! Hodaya, are you still volunteering with the cancer kiddos? :)

 

I had another EGD on Wednesday (camera down the throat to look at the stomach). There's a lot of inflammation in there. My stomach is inflamed, as is my duodenum (the first part of the small bowel). The duodenal folds are blunted/atrophied, which is an indicator for Celiac disease. He took biopsies, but they were all normal, so I don't have Celiac; don't know why the duodenal folds are atrophied. He did confirm that I have significant gastroparesis, as there was a ton of fluid in my stomach long after there should have been. He mentioned the possibility of a gastric pacemaker. I also have a hiatal hernia, but it's not severe. Sooooo, the diagnoses remain: gastroparesis, slow small bowel, colonic inertia, and rectal inertia/anismus. Since my colon is already gone, all my doctors are in agreement that the next step is an ileostomy. They want to do a loop, but I DO NOT want a loop. Too many complications! I hate going against their first recommendation, but I am going to insist on an end ileostomy.

 

Hi Laura, and welcome! So sorry to hear of your suffering, but this is a great little community and I hope you find help and encouragement here. It is horrible that you can't get any type of colon surgery in Holland. I know how miserable it is to have to use laxatives constantly. Most of us are from the USA, and it is possible for you to come here for treatment and surgery. You would need your gastroenterologist to refer you to a specialist here. It would require a prolonged stay in the US because the doctors would need to run a ton of tests, and they would probably have you do biofeedback/pelvic floor retraining to make sure your rectum functions properly. I would recommend you go to the Mayo Clinic in Rochester, Minnesota. Mayo is #1 for gastroenterology in the US, and because Mayo is a large and world-renown medical center, they are very used to patients coming from other countries for treatment. They are able to assist you in finding long-term lodging, etc. It does take awhile to get an appointment there, but the doctor you want to see is Dr. Michael Camilleri. I have seen him, and he is the most wonderful man, and so understanding. I saw him when I was 21 and very, very sick. He diagnosed all of my problems. I would have had surgery there, but one of the best surgeons in the country is near my home in Texas, so it was easiest to have surgery here. I had a total colectomy at age 21 in 2007, and there is no doubt that it saved my life. There's a girl on the forum named Sarah. She lives in Germany and she has had a total colectomy as well, but I know she has had to fight the system really hard. Hodaya is from Israel, and they do total colectomies there. I know there are motility doctors in England, so looking there might be an option for you as well. Please ask us anything, and if there is anything you need, that's why we're here! 

 

Happy Sunday!

 

Allie

Posted 3/20/2011 6:51 PM (GMT 0)
Thanks for the info, Allie! I will discuss this with my doctor and hopefully he'll support me to visit the Mayo clinic. I understand I'd have to stay in the USA for a while, but it isn't the worst place to spend some time hehe.

Is Sarah's display name pelztier86? That sounds German. If its her, I'll try to send a personal message. Sounds like 'the neighbors' have a similar system
Posted 3/20/2011 9:42 PM (GMT 0)
Laura, hi and welcome! i wish you the best of luck with finding drs to help you. it's not right to go on living like this, someone has to help you soon.

Allie, thanks for the update on Lizzie. sounds encouraging and maybe finally this sweet girl finds relief. i def hope she doesn't need more surgery, poor girl has had enough.

so sorry about the gastroparasis. what are your symptoms? do you usually have pain in your stomach - upper abd? i hope they get it under controle.

and yep, i'm still volunteering with those precious kids and really enjoy it. it's only 3 hrs once a week and it's more like helping the art teacher than really working with the kids. i wanted it to be more like actually working with the kids, doing stuff with them. maybe with time i'll be able to do more things than just helping the art teacher.
Posted 3/20/2011 10:05 PM (GMT 0)
I have had several bowel movements so far. Peeing and pooping is kinda painfaul/hard to do given the abdominal pain from the surgical incisions :P. Its gotten a bit better each day but being paranoid and having visited these forums the first things I thought were "OH NO, my pelvic muscles are weak due to the surgery" lol. Cant wait for the next few weeks to pass :P
Posted 3/21/2011 11:20 PM (GMT 0)
Boat,

Congrats! Wishing you a good recovery. Go really easy on food.

Lizzie still sounds good.

Christine, TONS of kids and college kids on cruise. I was using purrell hand sanitizer, washing my hands, and gargling with LIsterine non-stop. So far so good and I just got home. Lots of deck time helps too. The rest is just luck in avoiding the norovirus. I usually just check in with the doc on board, tell them if I get it I will need an IV and anti-nausea drug until it passes. I also have an ileostomy irrigation sleeve for unusually high output, sort of is like a HUGE bag that you would need it you got severe diarrhea. So far so good and I've been on about 10 cruises and have 2 more planned. BUt I do worry about it too, but does not stop me.

Will catch up tomorrow when I'm not so exhausted. Just got home. Ship internet was tooooo slow. RJ
Posted 3/22/2011 8:21 PM (GMT 0)
welcome home, Rosemary! good to hear from you again :) BTW, my one yr old nephew threw my cel phone in the toilet :p and now it's dead, so when you come to israel (so excited to meet you) dial 052-2547459 :)
Posted 3/22/2011 8:27 PM (GMT 0)
Thanks Hodaya. I will be in touch shortly about a time and place to meet. Thanks, Rosemary
Posted 3/23/2011 11:00 PM (GMT 0)
Well I spoke too soon. Came down with huge cold and very sore throat yesterday. Took some airborne and seem somewhat better. Feel like I have a slight fever but I don't. Gotta get back to sleep and see if I can sleep this cold off. Glad I was OK on the cruise and to get home and do laundry. A lot was going around. I will be lucky if this is all I got.

Next cruise is April 27, that is only 4 weeks. Auuuugh! I think I way over-scheduled.

Rosemary

PS Jenise, I will look back a few pages and try to find out what kind of surgery you are having now. As I remember you were having some small bowel obstructions after hysterectomy?

Jenise, I think I found your post about the thigh muscle transplant to reconstruct your missing levator muscle and that you have an enterocele. My original diagnosis was sigmoidocele (descent of sigmoid colon) into space between rectum and vagina; what I really had was enterocele (descent of small intestine into the rectovaginal space). All I needed was the space closed at the top of rectum and vagina that the small bowel was internally herniating into. So I did not even need my sigmoid removed, but of course my original surgeons, now defendants, removed sigmoid anyway, did it wrong, and then a ton of other issues.

I ended up with an acute angulation of my rectum due to the surgeon also taking off the top of my rectum which I did not consent to and there was no medical need for. But in the process there was some nerve damage or scarring to the puborectalis muscle which is the sling like muscle which controls angulation of the rectum. This puborectalis muscle is connected to or is actually part of the levator ani muscle, which it sounds like they are going to try to reconstruct out of your thigh muscle. The question that came to my mind is, how are they going to rehook all these nerves so that the levator and puborectalis muscle function normally? With all I've learned in my case, I have found that structural things can be reassembled so to speak but the nerves which make these parts function cannot.

Did you ask your surgeon about how the nerves to your new levator muscle will be rehooked?

I wish you all the best. Rosemary

Post Edited (esoR) : 3/23/2011 5:12:18 PM (GMT-6)

Posted 3/24/2011 9:22 AM (GMT 0)
get well soon Rosemary!
Posted 3/24/2011 1:33 PM (GMT 0)
Thanks Hodaya. Rosemary
Posted 3/25/2011 8:52 PM (GMT 0)
Allie,

I am still playing "catch up" after being away. I was so glad to read that Lizzie could eat some on her own. I was wondering how this was possible if her intestines were scarred with adhesions? or did it turn out to be a motility issue from all she had been through? or a miracle?

When you have time, let me know. Hoping she stays on the upswing.

And you too. Rosemary
Posted 3/25/2011 9:56 PM (GMT 0)
Allie, is your doctor going to try any meds for the gastroparesis? I would stay away from the reglan as it is an awful drug. The domperidone has been my life saver. I have also started taking a probiotic daily and that has helped significatly with the bms. I am now going about 4-5 times a day. As long as this med keeps working I think I will do fine.

Boat, sounds like you are coming along well. I know my diet is not the greatest. But I have just learned to eat that way or be in so much pain I have to go to the er. I also take supplements to give my body the nutrients that my diet is lacking. My last episode was a couple of summers ago and I was camping and had to be ambulanced back home. Worst three hour ride of my life. So I will probably never try normal food again!!

Hi Laura, and welcome to the group! You can learn a lot of valuable information here. I am pretty sure you could come over for the surgery. I dont see why not?? I know people come over for other surgeries.

I have started running. I hope that is ok on all my guts. There is just nothing left in there so I hope it is not all jarring around too much. I have a brace I put around my belly to help with support. Any doctors ever told any of you not to run?? I was going to ask mine but forgot. The girls I work with want to do a race in September so I have to get ready.
Posted 3/27/2011 9:23 AM (GMT 0)
Still have head chest flu. cannot seem to kick it. Very scared. Praying no stomach involvement or I'll be up at my ER trying to explain that I need an IV to prevent dehydration due to having an ileostomy. NOT a battle I want to deal with nor have the energy to.

Hodaya, I am freaking out. In only 3 weeks I am supposed to be on a ship across the Atlantic to make connections to eventually get on that trip to Israel. Will let you know how things go. My PCP told my LTDisability ins co that I was up to going back to full time teaching which I am not. I did the appeal, but we shall see. If not, I will get the money back in settlement, so whatever. But doubt she would write me a note so I could get my money back for the Israel cruise if I have to cnx. The ins co knows I have been doing some travel. I had to explain how sitting on a boat watching water with a half day side trip and 10 hours of sleep is different than a 12-hour non-stop work day full time teaching. Seems obvious to me, but what do I know, I am the one living it. I am in deep doodoo! Excuse the pun. Rosemary
Posted 3/27/2011 10:49 AM (GMT 0)
oh Rosemary, sorry to hear you're still sick :(( hope you kick this stubborn virus soon. sorry for all that's going on with the disability.... hope your appeal works! i hope you don't have to cancel your trip, i'd be so disappointed if we can't meet after all..... let me know.
Posted 3/27/2011 3:13 PM (GMT 0)
Thanks Hodaya. I will keep you posted. I hope you gave that doc a try for the rectal mucous suctioning. I had to cancel my suctioning prior to my march trip and I can tell I'm loaded with it, very uncomfortable. Rescheduled it for mid April prior to the scheduled departure from NY for the israel trip (Sure hope I can do it.) Anyway, I would just be tearing my hair out if nobody suctioned that mucous for me; it's so uncomfortable. Course I do have my whole colon and rectum manufacturing it, whereas you only have your rectum, but still, I can relate to your discomfort.

Did you ever contact Dr. Viz or whatever his name was?

Rosemary
Posted 3/27/2011 7:28 PM (GMT 0)
i'm doing ok, i just do my enemas once a mo or so and it's ok. i didn't call dr Ziv, i just have the feeling noone will want to help me with this. like you said having only my rectum produce mucous and not all of my colon like you, it's not as bad.
Posted 3/27/2011 7:46 PM (GMT 0)
OK Hodaya, Glad what you are doing is working. If it ever stops giving relief, it would not hurt to give Dr. Ziv a try. I know what you mean about thinking nobody will be willing to help you with this, but I have found that if something is really bothering you a lot, there is always someone who will try and help. Rosemary
Posted 3/27/2011 7:59 PM (GMT 0)
thanks Rosemary. there is a dr here who i've heard is SO nice and HUMAN! if i ever decide to ask about it, i will brobably ask him.
Posted 3/27/2011 8:03 PM (GMT 0)
Yes, NICE and HUMAN are necessary traits. I do totally hear what you're saying. If the other may not be that way, then why set yourself up. Totally agree. Rosemary
Posted 3/28/2011 12:43 AM (GMT 0)
Boat,

Where for art thou? Are you all recouperated and gone on with your life? or are you in trouble? Let us know. Hope all is going well, Rosemary
Posted 4/2/2011 7:32 AM (GMT 0)

Hi everyone!

 

Rosemary, hope you're over that bug!

 

Marisa, unfortunately there aren't any meds left for me to try for the gastroparesis. I am horribly allergic to Reglan...found that out the hard way about five years ago. It gave me tardive dyskinesia and I am extremely fortunate that a massive dose of Benadryl took care of the reaction; most of the time TD is a permanent disability. Domperidone was also tried about four years ago and it didn't work for me even exceeding the max dose. Erythromycin is an antibiotic that increases peristalsis, but tried it and I'm allergic to it. They're running gastric emptying study #5 pretty soon because we have to know exactly how things are moving before more surgery happens.

 

Please continue to pray for Lizzie...there are ups and downs. She has been able to eat on her own! To the point where they plan on removing the feeding tube :) It could be that her bowel needed to rest and the tube feeds allowed that to happen. She does probably have some motility problems with her small bowel, but that is not unusual with colonic inertia, gastroparesis, etc. The amazing news is that she's not obstructing!

 

She had the urodynamics (bladder function tests) done, and the results aren't so good. Her bladder doesn't contract, so she is emptying basically just by gravity. Her urologist feels that it is due to nerve damage from multiple surgeries. He suggested that she may have to self-cath, but the pain even with a pediatric catheter doesn't make that a very good option. Another concern is that her body doesn't seem to be producing much urine, regardless of how much she drinks. More tests definitely need to be done- there are a whole bunch of hormones that influence the kidneys and control the dilution/concentration of urine. She doesn't have a UTI and labs come back ok, but I do feel they need to do some serious, in-depth blood work (she's having substantial hair loss as well). Pray that happens soon and that they can find out what is going on and how to control the pain that she has with urination. Also pray for healing, that with time, her bladder would function as it is supposed to. Miracles are all around us...pray for another one for sweet Lizzie!

 

Off to bed...love to you all!

 

Allie

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