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TOTAL COLECTOMY PART 32

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Posted 3/5/2010 8:30 PM (GMT 0)
Hi All,

Our flight over the Amazon got cancelled due to just a passing shower.  So they took us to an opera house then back to the ship.  BOught a post card of the "meeting of the waters" where this yellow and black river flow next to eachother without any land separation, but due to Ph balance of each, the colors don't mix.  So that was what we were supposed to see from the air.

Rosemary

Posted 3/6/2010 12:50 AM (GMT 0)
Hey Jen, I live in Raleigh, were are you located.  I have an incredible GI and colon rectal surgeon.  They turned my life around.

Posted 3/6/2010 4:56 AM (GMT 0)

Lizzie- I love you so much!!!!  You are such an inspiration to all of us!  I knew you would get the help you needed and it's just so wonderful to hear how well you're healing and that you are slowly getting back to the ""Lizzie" we all know and have prayed would get through this struggle. You have always been and will continue to be in my prayers.  I look forward to just being able to chat about life when we all feel well again.  Hugs:)

Hodaya-So sad you are not feeling well:( As I always told Lizzie; never give up or just settle, there is someone out there that can and will help you.  There is only one you and G-D is giving you this opportunity to seek help and remain strong; you can and will get through this just as Lizzie has and many others have.) I love you and always pray for you discomfort to cease and healing to come your way.  Hugs to you:)

Janie-So good to talk with you; I  really miss being on here but life seems to get in the way A LOT lately.  So happy the miralax is still working for you and what great encouragement you give to others to try it first before doing anything drastic for relief.  How's that puppy of yours?  It would be nice to chat about something other than pooping all the time LOL.  Love you:)

Marisa- So sad to hear your daughter is so sick; I've had to take steriods numerous times because of my asthma.   I don't know about your school requirements, but many schools allow a student to be hometaught if they miss a week or more due to injuries or illness.  You just ask the school principal about hometeaching and he/she will ask for a volunteer teacher to come usually 2 hours a night for a short period of time until the child is caught up and ready to return to school; you will need a note from her dr. first though.  Believe me many teachers are very willing to do this because the school pays us very well to hometeach:)  I hope everything works out well for her and she is feeling better soon; it's always soooo hard when your child is sick:(

Have had an awful week, started out with severe D on Monday and being rechecked for c diff; but it may be due to a virus at school, that's our prayer.  then wed. got a cortisone shot in my shoulder to help it because it's frozen, woke up 2 hours after I fell asleep in excruciating pain and I couldn't move my arm at all, was up the whole night, took double vicodin-didn't touch it, ibuprophen-didn't touch it, essential oils-didn't work, ice, heat, flector patch-didn't work; it was so agonizing, I just paced the floor, cried and prayed. 

I had to go to school in the morning because of whole situation that is going on but I couldn't even dress myself; the funny thing was my husband buttoned my shirt wrong and thankfully I looked in the mirror before I left, it took forever for me to rebutton it LOL. I called PT but they said it sometimes hurts that much in the shoulder and should feel better in 24 hrs. but to call the dr in  the afternoon if it doesn't.  By noon my arm was swollen down to my fingers and I couldn't even rotate my wrist, it was that painful, so I  called my dr & they said the shot crystalized and it does that in 2% (go figure)of the people who get them (especially if you have a frozen shoulder)and there's nothing you can do for it but ice and ibuprophen, it usually lasts up 36 hrs. It's better today, I can bend my arm at the elbow, but I can't raise it at all; I had to have people help me put my coat on & my husband take my clothes off when I got home.  Hopefully it will be better by Mon. OK- enough of my pathetic life; I'm trying to stay positive through all of this.

Jen-glad to hear you are doing better; always thinking about you and praying for you.

Jenise-so sorry things aren't so well for you. I pray that you will get the help you need and find comfort.

Tracy-I hope you are doing okay. I feel so bad that you still have to feel pain daily.  I pray that you can make it to the summer and everything will go as planned.

Rosemary-Your trip sounds like a dream! So happy you are feeling well and are able to have a wonderful time.  Can't wait to be able to converse with you when you  get back! :)

If I missed anyone, I'm sorry, but know that I pray for all on this site every day.

To all the newbies- WELCOME:) You have come to the most friendly, knowledgable site you will ever encounter; there is never a question you can't ask and everyone here will encourage you in any challenge you face.

Peace and Prayers to all,

Judy

Posted 3/6/2010 3:27 PM (GMT 0)
Hello Ladies!!!

Oh Judy and everyone you are all so kind. I do feel the "old me" is coming through and I feel like I may have my life coming back in full force. This has been the hardest and slowest recovery by far, but worth it. Having this K-poch has given me back my life. I have not had any bloating distension, and only one vomiting episode since surgery (d/t not eating with antibiotics) and although I had many many complications once again I made it through this one as sick as I was....and I hope that some of you on here that feel helpless right now as you all know I did for so long can just find the little hope deep inside or look at my case and know if I can do it so can you all....you just have to keep fighting even though in the end I had Rosemary and all of you holding me up and keeping me from deaths door I was still able to find a little fight in me and the way I feel today is SO amazing compared to the last two yrs and four surgeries.

I had a scare this week....it was horrible and I though for sure I was headed back to CC for

I am still struggling with just a few things...one pain, but it is controlled for once with the fentanyl patch and norco and valium. I am weaning off the dilaudid and hoping that in the next few weeks I will be able to rid of some more. I have deep deep pain and since my pouch is so new and only 5 weeks fresh I have pain at times after cathing becuase of how often I have to do it right now while the pouch stretches. Cathing is getting much better and easier. more surgery. I could not get the cath in at all and I was pulling out bloody tissue....but after taking some valium, getting though the panic attack, and calling the stoma nurses at CC I was able to relax and get the cath in with no issues. I was so tense with this anxiety that has come on all of a sudden this week that I was tensing my whole abdomen and they said in turn tensed my valve which then would not let cath into the pouch. It was scary, but now I learned from it and can move on if it happens again. I think just after everything I am having this anxiety in response to I cant believe this journey from He$% might be coming to a close and its so amazing, but I must have a little underlying fear after all I have been through!! I am getting stringer each day...I cannot do much for a long period of time. Even going to the mall is hard and I left looking half dead, but this will all take time. I went into the surgery so weak I have a long ways to go with strength and gaining a little weight. I wish people would ease up on the weight comments a little...I am trying hard and have gained 4 lbs which is good! 97-98 is not that bad...i think its the lack of muscle that makes things look worse.

Hodaya and Tracy- I really think you cannot wait three mo and I agree with Peltz that you need either an ileo or a pouch like mine, but you cannot go on like you are and my heart breaks for you. Now that I feel the way I do again I could not imagine ever going back or how I made it as long as I did. You and Tracy are giving me heart palpitations over how sick both of you are!!! You both cannot just sit here and let your bodies suffer like mine did and then go into the surgery so weak. Tracy's belly is so distended...may be worse than mine was, but just as bad if anything and now woth her new nausea and weakness. You all have to not worry about jobs, timing, etc and get help now before something bad happens. I am on this side now and I could not bear anything happening to any of you and both of you are so sick right now.

Jen- I am so happy you continue to get that life of yours back and grow stringer each day. I love talking to you and thanks for all your support!!!

Marisa- I miss you girlie and sorry to hear about your daughter, poor thing. I think of you so often and I am glad my text could make your day. Its how I feel....some of you have become closer to me than I ever imagined and I could not think of life without you all in it!!!!

Janie- Miss you sweetie. So happy the Miralax is still working and I agree with Judy, you are insiration for others to try this before having to go back under the knife. I hope it continues to give you the relief....i truly pray for this daily becuase I want this to be the end of surgery for so many of you. I wish Hodayay would give it a shot, but I feel so badly as her and Tracy sound so similar to me....I hurt thinking of that.

Rosemary- You are SOOOOOO missed!!!! I am so happy you have been having so much fun!! and staying healthy. You are inspiration to so many that a "bag" does not keep you from doing anything!!! I know you cant imagine the cathing, but its not bad at all...its not that time consuming at all and after 3 months I will not have this rigorous schedule and will just empty when I feel full. I have been having phantom pains in my rectum like its still there!!!! Its bothersome at times....I know I dont have one, but it sure feels like I do and its an annoying pressure :( Hopefully with time it will go away.

I know there are a couple new people and I am so behind on your stories. I was gone for so long I cannot get the full story, but know for you newbies and anyone I missed...I LOVE U and have been praying for you so much. You all made this possible for me, to be here, writing this and I love you all so much for what you did for me!!

Lizzie

Posted 3/6/2010 8:06 PM (GMT 0)
"Colectomy for slow transit constipation" outcome us decribed in several cases. there were some patients with recurrent constipation after ileorectal anastomosis. only one case was found to have small bowel issues, the others had recurrent constipation caused by a dysfunctional rectum that had lengthend and created an reservoir. This changing was so distinguished that the lengthened rectum were first considered as some part of the sigmoid that was left by the surgeons.
But all patients had an ileorectal anastomosis but the rectum finally looked and acted like actual colon.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2498368/pdf/annrcse01543-0029.pdf
Posted 3/7/2010 12:24 AM (GMT 0)
Lizzie, I am so happy for you that you're on the road to recovery and you sound great.  It is wonderful to hear from you again.

 

Hodaya, I am so worried about you.  I hope that your doctors can help you, even though your medicare won't help pay.  Your health is a primary concern, and I hate that you have to wait so long and go thru so many hurdles for help.

 

I'm in Ft. Lauderdale with my husband tonite.   We're in a nice hotel on the beach and had dinner outside near the water.  It's been a beautiful night.  I am a bit tense, as my appointment with Dr. Wexner is finally almost here.   I will see him on Monday afternoon at 1 and I really pray that I have healed enough to have my surgery soon.  Cleveland Clinic is a good site to see!  I feel that I am ready for my ileostomy surgery and am soooooo ready to get rid of my tube, and I want to be able to wear shorts and knee length skirts again, too.

 

butterfly

Posted 3/7/2010 12:57 AM (GMT 0)
Lizzie, I don't think my stomach is worse than yours, it is just that my stomach has been blown up 4 times with pregnancies, therefor, I have way more loose skin than you did. Today it is still incredibly bloated and despite taking miralax, still not much happening. I have been taking the generic form of miralax, clearlax, and I went and bought the brand name, miralax today. Me and my husband think the generic may be contributing to the excessive bloating! What do ya'll think?? Is that even
possible?

Butterfly, is your tube draining properly again? I sure hope you get rid of it soon too. A normal ileostomy will probably be a breeze to care for after the leg bag.
Posted 3/7/2010 3:04 AM (GMT 0)
Hello everyone,

Judy, so good to hear from you, but I'm so sorry about your shoulder. Ouch, that sounds so painful. You could really write a book, couldn't you?? Hope it gets better soon! And I hope your D turns out to be just a little virus. It's been going through my family (my son and his entire family had it last week). It's missed my husband and myself so far, but somedays I wouldn't mind a little of the D!! I really hope you're feeling better soon. By the way, how is your daughter?

Lizzie, I'm sure it's going to take awhile to get used to your new way of "pooping" but all in all you sound really good! I'm so glad things are finally looking up for you.

Lori,
I've been thinking about you. Glad you and hubby are enjoying a nice evening before your appointment tomorrow. Good luck; we'll all be waiting to hear what you find out!! Hugs....

Pelztier
Thanks for all your information. I'm not sure what my problem is, but I definitely have trouble emptying. Even taking miralax twice a day, I use enemas often to finish up. I go a little bit several times within a few hours of taking the miralax, but somedays I just still feel like there's more to come out. It's never much, but enough to make me feel better. Some nights I still drink prune juice, and that always helps alot. I still need to to back to my surgeon one more time; I've delayed it to really see how things work. If I stick to eating only a little bit at a time, I do much better. Unfortunately the last 2 weeks we've had visitors and we've been eating out alot.

Hodaya,

So sorry you're having so much trouble. I know that without miralax I wouldn't be going either. I forgot to take it the other morning and was away from home all day. I felt horrible and never went all day. I'm not sure what I'll do if it ever stops working completely. I'll be anxious to see what your doctors tell you. Can you still drink prune juice to help you go? So sorry, honey!

Tracy,
It sounds like you're pretty miserable alot of the time. I'm so sorry. I know there's no one in my family who understands how horrible constipation can be.

Take care everyone!

Janie
Posted 3/8/2010 12:54 AM (GMT 0)
Hi everyone, tonite!  I'm e-mailing from my hotel room.  I feel on edge waiting for my appointment tomorrow.  rolleyes I keep telling myself that everything is going to be alright, but I really don't know what I'll feel if I get any bad news.  I cried tonite when we passed Cleveland Clinic on our way to dinner.  So much has happened since my original colectomy here.  I desperately want to get rid of this bag on my leg.

 

My bag is working again.  I had about 2 weeks of terrrible luck, but now I'm back to normal, and emptying it about 5 times per day.  Sometimes, I think this might have been God's way of getting me ready for an ileostomy, because I wasn't ever ready for one before.smile

I don't understand why so many of us on this site have had to suffer so much and go thru so many surgeries.  If everything goes as planned, this will be my 4th surgery and I'm really nervous about any of it, even though I know that Dr. Wexner is the best around and often redo's other physician's surgeries.

 

I believe in prayer and have many churches and friends praying for me and all of you (my friends) on this message board.  Some day, we're not going to have to fight so hard.yeah

 

butterfly

Posted 3/8/2010 3:56 AM (GMT 0)
Hi,
I'm new here and have been reading this thread. I'm due to have a 'sub-total colectomy' and am quite frightened about it.

History: over 10 years of chronic constipation, initially diagnosed as IBS-C. Was still having problems when I got a recommendation and referral to another GI. From the start, he GETS it. I have a fairly complicated medical history and have quite a few meds that I take daily. GI added Amitiza, which worked well for about 4 months, then stopped working.

Due to travel, I saw another GI because I was having bloating and discomfort, no, pain! He ordered a gastric emptying test which came back abnormal. I had a Nissen fundoplication about 18 months ago for severe GERD, so he ordered an EGD to see if I had any obstructions, adhesions or scarring from the Nissen.

EGD showed gastritis (no wonder I was still having reflux!). He started me on Carafate 4x daily. When I returned to 'my' GI, I reviewed all of this with him. He did not believe the gastroparesis diagnosis, and had me repeat the test but without taking certain meds. THAT gastric emtpying test came back normal.

Next up was a CT of my abdomen, which was grossly abnormal. Transverse and descending colon were to the right of mid-line. Diagnosis at that point was possible malrotation, or internal hernia.

Next up was the barium enema with contrast. I got to see those images on the fluoroscope. The test took much, much longer than normal because of the very redundant sigmoid colon that was easy to see. It took a LOT of manipulating and turning and tummy rubbing to get the barium all the way to the beginning of the colon. Obviously, not a normal result.

Last week was the Sitz Marker test. One xray was taken right after I swallowed the capsule, and then 5 days later. No markers had passed; all were in my ascending, transverse and descending colon. Nothing in sigmoid. I also had a LOT of barium still in my colon, 16 days after the barium test. Pretty clear things were not moving.

So based on all of this, my GI says that I have a completely abnormal colon that is not working (colonic inertia) and it needs to be removed. (And all this time I 'just' had IBS-C!!)

So reading here, with total colectomy procedures, has me nervous. I know that this is a BIG DEAL, because it isn't like you can get your colon back! I do NOT seem to have any pelvic floor disorder, and can pass stool eventually without enema, manipulation, or stimulant laxatives, usually. (But I sure did look forward to my bottle of Miralax after I had the last film done for the Sitz marker test!)

It sounds like so many here have had complications, disappointing outcomes, or other problems that I never would have considered. sad

I started another thread to ask questions, but all of you right here seems like a very strong and supportive group! :) I've read your experiences, and don't know which/what might apply in my case. My GI makes it sound easy: "We're shortening your highway". But I know that the surgery, even if done via lap, can be painful and take a long time to recover, physically. And then if things don't turn out successful....then what?

In some ways it is a relief to know that there is a CAUSE for all the gut problems. But what started out as "we'll take out the redundant sigmoid portion" is now "out with the whole thing".

I'm pretty active, have some chronic health problems that I'd been doing well with, and this had become the most annoying problem that is impacting day to day life. Limited diet, haven't eaten out in months and months, have good days and bad days. And when it is a bad day, I'm just exhausted.

What factors should I consider before making a decision about surgery? I meet with my GI and my surgeon later this week. I know I can take my time before making any choice, but I don't really know what other option there is for me. And if I DO need to have my colon (most of it) removed, I'd rather do it sooner than later, so I can get back to feeling well and being active.

Thanks for any suggestions, tips, tools for decision-making, or advice. By the way, is this more common in women? Or is this thread geared towards women?

I can see how great this group is just from reading your posts.

:-)
Posted 3/8/2010 3:39 PM (GMT 0)
Rottiemom,

Welcome to this site. There is a wealth of information here, and everyone is very helpful!

You say you don't need laxatives to go? What happens, you just don't go for days at a time, but eventually do go? Most of the women here who have had the total colectomy (some doctors call it sub-total, but if you do have surgery, you most likely want them to remove the entire colon and attach your small intestine to your rectum) just can't go without laxatives of some sort.

Many of us still have issues, but at least Miralax, prune juice seem to help now as they never did before surgery. Some people have issues of going too much, but that's not a problem for me! I'm one year out, and without miralax 2x a day, I still woudn't go. One very good thing about the surgery for me is that I don't have acid reflux nearly as badly as I did when I had my colon! I really think all that food just sitting there got backed up. I have Barretts Esophagus and am going to have another scope on the 25th, but I don't seem to have acid like I did before....

I'm at work and don't have time to post much, but wanted to say welcome and I'm sure you'll get lots of responses! good luck,

Janie
Posted 3/8/2010 5:51 PM (GMT 0)
Rottiemom, Welcome to the best message board the internet has to offer. You have definitely found the right place to discuss pooping issues.

How old are you? I am 39 and was also dx with ibs-c for years. It was after my hysterectomy in 2005 that I started seeing doctors right and left because I couldn't push down to poop. So, after many doctors and many more tests, I was dx with colonic inertia and a pelvic floor dysfunction. I have yet to have surgery, but plan to have surgery in the summer time. I do not qualify for the colectomy though because of the outlet issue. I am planning to have the bcir or k-pouch procedure, which is an internal pouch, no bag! They will remove my colon and rectum for this procedure!

Remember, there have been many women that have had a total colectomy and are doing great and don't post here anymore. You can do a search at the top and type in total colectomy, part 1, part 2, part 3, etc. and read many success stories. Please don't let us scare you with our stories.

Yes, this seems to be a majority woman disease!

I never had the barium enema and that test still terrifies me. Was it very painful for you?

Tracy
Posted 3/8/2010 6:48 PM (GMT 0)
Janie,  I have had a total colectomy on Feb 19,  so my sm. intestine is hooked up to my rectum and I have absolutely no problem going to the bath room,  no more enemas or laxitives.  My doc said with the total coleoctomy I will never be constiipated again, and I have not.  Make sure you keep a eye on your Barretts Esoghafal,  my uncle had it and did not know and died from Esophigal cancer...

Tracy, I had the same thing as you CI/ Pelvic Floor with a external sphincter that was so clamped down it would not let me pooo. just like you could not push anything out and never got even the urge to go...but with the total colectomy everything is great and my rectum works just fine.

Posted 3/8/2010 8:28 PM (GMT 0)
hello to all my dear friends!! the guy repairing our house is having the day off so i could catch up with everyone! my surgoen was supposed to give me an answer today about the defecography. i called him as we scheduled and he said that they discussed my problem and reviewed my tests (not sure which, maybe the x rays i had last time i was at the er..?) so anyway, he said they think it's not worth it to have any tests done esp b/c of radiation, and just have an ileostomy done....... WHAT?? first of all, this is totally not making any sense to me to just go for ileostomy W/O doing any tests.... ANY effort to try and see if there's a way to make things better...... as far as i'm concerned, this is all just hallucinatory!!!! are these drs for reall....?????? honestly, i'm gonna consult with as many drs as needed and will exhaust all possibilities there are till i decide on the bag..... GOSH, i didn't expect to here that, at least not at this point, that's for sure! he told me to come see him on this Wed. and we'll talk about it, but i don't know, he made me simply so angry today!!!! and besides, every time i talk to him on the phone, he NEVER sais goodby when we finish the conversation... he just hangs up w/o saying goodby and that pisses me off!!!! besides, if there really isn't nothing else that can be done, then i will take normalax (miralax) and as long as that helps, i'll stick with it. it should be a long ride before i do an ileo! (i bought one today) Lizzie, i just read your posts and smile at how good you sound, honey! can't tell you how happy i am to read that you feel so much better and keep getting better, slowly, true, but on the right direction. you do still have some tough struggles on the way, but this time it all sounds promissing, i just couldn't be happier for you. i'm only a little worried about your pain.. is it getting better? i don't want you to have chronic pain. Jenise, how are you? i'm so sorry you feel your surgery didn't do much. i also feel it very clearly that i have a rectocele and i must have the defecography test done. i will do it somehow, somewhere else if they won't do it for me. i hope you're able to keep manage with miralax and never need any more surgery. Marisa, i don't know what those hot pools you mentioned are all about , but they sound intersting, esp if they help with pooping LOL! glad you had relief.. maybe you should do it more often! sorry your daughter is so sick. how's your rectal bleeding? Leslie, i'm so glad to hear your surgery went well and that you're feeling so much better now w/o your colon :) i hope you keep doing well! Tracy, Lizzie's updates sure sound promissing, don't they? i so hope that you can also find peace finally with this same procedure and it will be the end of your misery. Janie, it does sound like you still have challeges to deal with and it never get simple for us, does it? but even though it's not perfect, i hope miralax keeps wording for you forever and you never have to have another surgery. i've said it before and i'll say it again.. don't worry. i'll never have an ileostomy w/o trying miralax fisrt, cause that totally won't make any sense, right? anyway, boy am i glad those 3 slices made their way through! thank goodness for miralax. i'm so tempted to start just so i can finally eat pizza.. ha ha. valda, welcome and nice to meet you! i hope you find all the answers you ned on this board. i know it has helped me greatly! if you have any questions, feel free to ask. your zits marker x ray definitely indicates a sever motility prob - CI. don't wait that long as 3 mons, you just go there and beg for surgery. Rosemary, glad you're still doing good and enjoying your incredible cruise! we all miss you. KC, what you're going through right now sounds so familiar.. we've all been thorugh that road, ppl telling us to change our diets... duh, as if we didn't try that yet. would you believe it that just a few day before surgery, one person at work (after i've explained my prob to her in details) just few day before surgery telling me "but what if you try activia..? it can really help.." LOL i told her "are you for reall, girl? if activia had worked for me, do you think those drs would offer me such a surgery..?" darn, they just can't porccess this. i can't believe the way those drs talked to you, what an awful thing to say! stay strong, my dear, and don't give up. you'll find the right dr who will listen to you and help you! Sarah, thanks SO much for all the advice and information, i appreciate it greatly. and it's very encouraging to know you feel so good with your ileo and it doesn't limit you in your daily life. i first must try it all before doing this step, but it is SO good to know that having a stoma is not the end of the world. you make it sound better. Rottie, so nice to meet you too! so sorry for all the trouble you've been going through for so many yrs.. i can honestly say that even though i still have issues, it all was MUCH worse before the surgery. i feel MUCH better w/o my colon. and i believe that you will too. Shannon, your dr is wrong, i don't think your zits test was normal. most drs do the last xray after 5 days and not 7, and if after 5 days you still have most of the markers in, then that is considered abnormal. if you don't feel the urge to go for days, then that certainly means a motility prob. what ever you do, seek a second and even third opinion. Laura, welcome! gosh you're so young! yep, i say find a different dr, cause these drs don't seem to listen to you. what tests have you already had? Judy, gosh, i hate that you're going through all this pain.. your shoulder and arm.. it sounds SO painful. i hope you're better now ((hugs)). your encouragemnent always makes me feel so much better and i just love you for it! well, it was so good to finally catch up on you all, dunno when i'll have the computer again though.
Posted 3/8/2010 8:34 PM (GMT 0)
Lori, i have been thinking about you all day!! how did your appt with dr Wexner go?? so anxious to hear all about it, so anxious for you to start heading to better days, my dear!!! love you and waiting for your update!
Posted 3/8/2010 10:00 PM (GMT 0)
hoddaya,

no, my ileo does not limit my quality of life. The persistent symptoms caused by my stomach/small bowel and bladder dysmotility do limit my quality of life yet severely.
I am not able to got out, have constant pain in my bladder/ureter and I still have to deal with nauseau and fullness, distension and abdominal pain if I eat too much (for me, not for normal people) at one time, I am also extremely limited in what I tolerate. I eat very little throughout the day.
I have not an even roughly normal life, I have no social life at all, I have no further education and can't do studies after my second school grade and I can't work either.
I have a permanent bladder catheter that constantly causes infections and a hickman catheter for intravenous feedings which has been infected recently.

I don't know how life will be like for me in the near and far future, I do not know if I will be ever able to find a partner, have a family, or live independently from my parents. All what my docs can say is that chronic intestinal pseudoobstrcution usually tends to deteriorate and worsen.
BUT the ileo is the best thing I have ever had so far.

Before the ileo, I was in constant SEVERE abdominal pain and hadto force myself to eat 400kcal a day which causes even more pain and nausea.
I think it is a relative thing. It am not good, but everything that is different from the condition I was in before the ileo is an improvement. And since I was extremely bad before considering an even slightest improvement as a gift for which you are very grateful is not difficult at all.

But since it is not very likely that you have small bowel motility problems (although this should be ruled out once again since sometimes small bowel issues can appear after colectomy for the first time) I am sure you would be very fine with the ileo like Rosemary.

Post Edited (pelztier86) : 3/8/2010 3:07:47 PM (GMT-7)

Posted 3/8/2010 10:18 PM (GMT 0)
I was about to have bladder surgery to remove my bladder that is also affected by the underlying condition. Well, this is what happened:

I was admitted to the hospital since I should undergo the planned bladder surgery (removal of the bladder and creation of a continent (catheterizable) urinary diversion that is made of small bowel loops, ileum-pouch, kock-pouch etc) the next day. Everything was prepared and coordinated between my docs.
After preoperative preparations when the exact surgery time on the next day was already determined (surgery should be done by both my urologist and a pediatric urologist who is familiar with (congenital) bladder malformation and dysfunction and a visceral surgeon who should remove the dysfunctional rectal stump in the same session) I was told that the Director of Urology would like to talk to me again before surgery.

He came in and immediately said that he had his opinion and nobody would make him change it. He wouldn’t allow to perform surgery on me in his clinic since he could not take the responsibility for a surgery when there is no 100%guarantee for an excellent (that means no fair-good, too) outcome. However, it was not me he was concerned about: He just stated that he represented a clinic that is well recognized and that he would not jeopardize his reputation by any outcome that is different from being excellent. In other words: this director only allows surgeries that are very good for the statistics and these surgeries are the common ones for the common reasons (that is cancer).

He was not interested in how I have to live, what my conditon is etc. although I tried hard to explain it to him but he he did not let me to do so.He was not willing to consider the underlying condition CIP (he just neglects) as the possible cause for my bladder issues and compared my case with previous studies on young women with undefinable pelvic pain that does not have organic and/or functional causes but normal bladder capacity and in whom pelvic surgery (inclusing bladder removal) is unsuccessful even with total evacuation.

He did not make any other therapy proposal except for the one that I should go to an urologist/surgeon in Munich (another big unviersity clinic) who would evacuate my whole abdominal cavity and remove everything that I’d like to. (No comment on this!)
He did not show any compassion but he finally revealed that he had not changed his opinion since three weeks ago when my urologist had talked with him twice about my case. Obviously, he had looked at the results within a few minutes without considering my whole clinical picture and history. Apparently, he did not see the neccessity to inform her, me and my docs about his decision; he prefered to fool everyone and demonstrate his influence.

You have to know that German chief docs are untouchable and have too much power. They mostly do not have anything to do with the treatment of patients any more. There is a very strict hierarchy in the wards. The actual and good work is done by their superior and assistent docs (like my GI doc and the urologist who took care about my case) who have to be strictly devoted to their chiefs and are not seen as an equal partner with competence and partially independent decisions for the patient’s benefit. In consequence most chief docs lose any connection and compassion for he patient and act as if they were half gods in white.

When the chief doc make a decision his docs have no chance to correct it and express their own opinion officially no matter if it seems to false to the majority of them.All of my docs agreed that the behaviour of the director was not acceptable and some said that I should try to complain about him at the superior director office of the clinic but this might not be successful in helping me get surgery/therapy.However they would never take the risk to express their opinion in presence of the director or in public. Although I have found an understanding gastroenterologist this advantage is useless when there is only little he can do for me for reasons that are not medical-related but are to be found in the system.

I am currently trying to find another urologist/clinic that are willing to perform surgery but this is very very hard especially in my age and with the history and the reports I have.
Posted 3/8/2010 10:25 PM (GMT 0)
2b ColonFree
Thanks so much, this journey has been a pretty rough one but getting better by the day.  It is my 6 day with the drainage from my incision.  It did not leak during the day yesterday but in the middle of the night I woke up 2 times for pain meds and the last time I woke up I had leakage from the incision that soaked my gown.  so had to get up and tend to that.  So I am wearing my pressure bandage around my waist because most of my steri strips have come off from all the leaking and they were just put on March 3.  With the band around my waist it feels like it is keeping my incision together better and it lessend some of the pain..

Boy the last few days all the muscles they cut through are rearing their ugly head and hurt trememdously.

But I am keeping the faith that everything will get better in time, just starting to get a little bored with tv, so I am going to have to find a good book to read.

So to everyone suffering I feel your pain along with everyone on this site, I pray for all of you...Leslie

Posted 3/8/2010 10:31 PM (GMT 0)
pelztier86
OMG, how terrible for you.  After all you have gone through and for a power tripped man does not like the odds he blows you off.  There has to be someone you can go to and report him to the AMA.....best of luck to you...Leslie
Posted 3/8/2010 11:48 PM (GMT 0)
Hello everyone..  Finally, I've had my appointment with Dr. Wexner.  He is going to do my surgery on July 14, making certain that my small intestine is in the best state that it can be.  He blocked out the entire day of my surgery for me and said that I would have his undivided attention for that day. 

Dr. Wexner said that my surgery would probably last 10-12 hours.  He wants a urologist available to give me stints, and 5 units of blood available.  He said that he would do the best that he could for me, but worse case scenario, I could end up with short bowel or die.  With short bowel, I would not be able to keep any nutrition and would have a tube in my neck to feed me. 

Dr. Wexner said that this was going to be a very difficult surgery, and made a point of telling me that my nutritional intake had to be good prior to surgery and I must take vitamins.  He could not tell me how long it would take for me to recover.  It's all a very big risk, so we will pray for the best.

It's been a very long day and I'm very scared, but at least now I have a date and can work my life around it for now.

butterfly

Posted 3/8/2010 11:58 PM (GMT 0)
lasbutterfly
                               Hello to you...OMG, wow huge, huge, surgery.  I bet your anxious, and scared, and the fear that come with that type of surgery.  Every surgery has a risk of death, no matter what kind.  I hope that you have a wonderful support system and plenty of help when you return home...  NOTICE :  that I said RETURN HOME....   So I know in my heart your going to be just fine.  I had so many people praying for me so I know that prayer work, cuz I am on my way baby to feeling great I can just tell.

I will put you on our prayer list at both churches plus have all of my family sending prayers and well wishes for you to be safe and to heal and get well.

God Bless you as you face this huge challenge, and just know that all of us are pulling for you... 

Best of luck to you

Leslienono

Posted 3/8/2010 11:59 PM (GMT 0)
Thanks for your replies. I know I will learn a lot here just reading of everyone's varied experiences.

Janie, I do take Miralax 2x daily, and when I get realllly stuffed, I resort to Dulcolax, but I do try to avoid it. I drink tons of water, easily 3+ liters of water a day. The problem sets up with several days of no bms, and then the terrible cramping and shivering cold, and the awful episodes on the toilet. I am able to expel the stool eventually, and haven't needed to manually extract or use enemas. Sometimes once the 'plug' is passed, I have violent diarrhea. My GI says "the cork pops out....and everything behind it comes too".

Tracy, I am 45. I do not seem to have any pelvic floor dysfunction. But then again, how would I know if I did!? I AM able to push the stool out.

The barium enema wasn't terrible. The prep is just like the prep for a colonoscopy, and I've had several of those. In my case, I had a 'trainee' insert the tip into my rectum, and she was unsure, and I said "Just keep it coming---Don't hesitate because you're not there yet!" Infusing the barium was OK, too. Just felt full and bloated, almost like I always feel. I had the double contrast, with air introduced to expand the lumen of the colon. The exam took a long time as I mentioned, because of the very, very long sigmoid, and the radiologist had me turn, tipped the table head down, tipped the table so I was standing, and massaged my belly. FINALLY she was able to view the proximal end of the colon, though not very well. They did drain out some barium part way through, but for me, the worst part was post-test. It was like a terrible IBS attack. For me, that usually means really bad cramping, and becoming very, very cold. I thought I was handling things pretty well, but wasn't really prepared for the discomfort AFTER. I was glad to get home and curl up in my own bed with my own bathroom.

I was pretty fatigued for a few days. And imagine my surprise when I still had barium in my colon 16 days after the exam!

Right now, I've got a call in to my GI because during the Sitz marker test last week, I was taking two medications that may have contributed to the slow transit. Of course, I didn't know that until after the test was done! I did stop the Amitiza, Miralax and Nexium for the test. But I also take meds for fibromyalgia, which may invalidate the test. I really, really want to re-do the test before making any decision about surgery. If the problem is 'just' the redundant sigmoid, I'm prepared for that surgery. But if I screwed up the test and those results point to CI, well, I think I need to get confirmation of that.

So sorry to hear of you ladies having such challenges. Please know that in sharing your stories, you are helping me (and I'm sure a LOT of people facing this), SO much! So to you all, I say Thank You.
Posted 3/9/2010 12:02 AM (GMT 0)
OMG, my stomach has been so swollen and HUGE! Up above my belly button, but below my stomach....and slightly to the left is a hard ball, bigger than a golf ball. I am freaking my ass out. Could this be poop? Is it a tumor? I scheduled an appt. with my doctor, but it is not until April 2nd and I didn't notice this hard ball until just now. I am massaging it to see if it will go away. It has to be poop! But is the colon in the front like that?

I scheduled this appt. because I still have not heard from him with the results of the tests. I plan on getting all of the test results, doctor notes, etc. and send it all to Fl to be reviewed. I need to have something done about this and I am tired of waiting around!

And hopefully in the meantime, this hard ball isn't something horrible!

Oh yeah, the hard ball is not painful when I press it at all.

Post Edited (answers4me2) : 3/8/2010 5:15:45 PM (GMT-7)

Posted 3/9/2010 12:19 AM (GMT 0)
Your transverse colon is in that area and on both sides of your abdomen...could be poop, could be a hernia, but the doc will help you out...we shall pray for your healing....Leslie

Posted 3/9/2010 12:52 AM (GMT 0)
Hi Rottie and welcome! You have come to the best site for answers to your questions from the most compassionate people ever.  Everyone on here will be more than willing to help you and encourage you every step  of the way and they have a wealth of knowledge to assist you when making decisions.

I had a subtotal 7/08 and have about 2 in of my colon left.  My surgery was open due do numerous abdominal surgeries.  I was in the hospital for 5 days, started with 20+ bms and went back to work full-time 6 weeks later having 8-10 bms.  Was I really ready to go back to work, probably not, but I had to because of my workplace.  This was by far the BEST decision I ever made; I have NEVER had any complications, but I still to this day remain on a low residue diet.  My GI is very adament about sticking to the diet whereas most let their patience eat whatever their body "tolerates" after 6 weeks.  I have always said that is one of the biggest reasons for my surgery's success.  You will be totally amazed at how well you feel after the surgery and can't actually believe you were that sick. Many people will start telling you how healthy you look too! 

This surgery will take a looooong time for your body to fully heal, but you will slowly gain strength every day by walking.  If your dr gives you a choice, I would pick sooner rather than later.  You don't want to have to keep taking all those meds.  If you have more questions, please don't be afraid to ask.

I wish you the very best.

Judy

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