Total Colectomy Part 35

Part 35.. can you all believe how long this has been going!

Lizzie, oh sweetie, so glad you're home! Just take it easy and follow doctor's orders. My pelvic repairs I had the same restrictions on lifting weight, so remember - no vacuuming or cleaning! Praying for your continued recovery!

Marissa - good to hear from you again!

Rosemary, my goodness... all your cruises are just so wonderful sounding! I know that your ordeal with your ostomy has to be a bit more difficult to accept, since you had nothing wrong with your colon as far as CI or other issues!

Tracy, your time is nearing!! I just will be praying and praying that you'll be a success story! (even if you will be like me and have to take a dose or two of MiraLax a day). I do pray that the Miralax never stops working, as it has been the only thing in my entire life that has worked! Even though it works, I know the colon is still full of stool (I can actually feel my filled colon through my stomach! Can you?)

Hodaya, that MiraLax not working when you don't have a colon.. is a sure indication something is still wrong!

Janie, finding the perfect combination is the hardest thing! I found that taking fiber supplements with the Miralax made it worse for me. I also reduced the Miralax to 3/4 dose a day.. but because of the pelvic issues, I can't go without using a fleet glycerin or 2. I PRAY that after this next surgery it will improve enough for me not to use them... but I just don't know at this point, and I don't think the doctors are sure either. However, I CAN go using what I'm using and I would never think at this point of getting a bag, but not to say it won't happen. From my researching.. the older I get, the worse my pelvic dysfunction will come, possibly making it necessary... :(

Poor hubby was in the hospital this week! Not 100% sure what happened to him but they think he had a gall stone in his bile duct. When I took him to the ER his temperature was 104.7!! His liver functions were way off and he was yellow! They ending up doing a procedure on him and inserted a stent into his bile duct. He was released on Sunday, and is doing so much better! (Went to work on Monday!) We are getting ready for a road trip in our RV.. still a little nervous he might end up back in the ER to have his gallbladder removed!

Janie-No I do not have pelvic dysfunction. At least I do not think so. I do not have a GI doctor. I am wondering if I need to go see one just so I can stay on top of things. I never had a GI doc just my surgeon who has been wonderful but I dont think he wants to continue to see me just to figure out what can help me. I am interested to know what your new doctor has to say.

Allie-so sorry you had to do those awful tests. All these tests are just cruel and inhumane!! Who would ever have thought that these test even existed. You feel to violated after them to and I always had a flippin man who did mine. What the?? I think that is why I do not want to go the doctor is cuz of all those tests. I will just continue to use the Miralax as long as it works.

Yes, I do believe a lot of our problems are genetic or congenital. My surgeon told me mine was most likely congenital. And that my small intestine looked good, but that it can become affected any time in the future. So discouraging when I have already been through so much. I just wish there was a magic fix to all our issues. Like most other problems once you fix it your good, but with bowel problems it seems like it is a life long problem. So not fair!!

Jenise, so sorry about your hubby! That is scary! I just had my gallbladder out and it was pretty rough for about a week. I thought it was going to be easy cuz of what I have already had done, but I was wrong! I hope he gets feeling better.

Well, back to work for me! Oh Joy!! We have been so busy today and have a busy afternoon! Love you all!

Hi everyone. I haven't posted in awhile, but have catched up on my reading tonite.

I am cramping horribly. My abdomen is distended. My husband can flush water thru a syringe into my tubing, but he can't pull anything out, not even the water and I am so bloated.

I called my surgeon's office that did my surgeries last year and they said that I could go to the emergency room tonite or come in first thing in the morning and my surgeon may admit me and have me do a CT scan. The doctor thinks that I may have some bad adhesions that are giving me troubles.

Of course it is at the worst possible timing. My cousin from out of state is arriving on Saturday and we're supposed to be going to Busch Gardens. I have some leftover pain meds that I'm using until I see my doctor. I'm hoping that I can hang in here until my surgery on June 11 at Cleveland Clinic. My strength is about gone at this point.

butterfly

Hi Girls!

I typed an extremely long post on Sunday then poof it was gone!!! and it was like 11:00 and there was no way I could start over bc 4:30 arrives way too early!!!!!  Anyway, I only have a few min. to chat bc it's already 10:45 and I REALLY need to get to bed by 11:00.  My class is so very challenging these days that I  need ALL the energy I can get to use with them each and every day.  So very sad all of the baggage that children bring with them and they don't know how to express their needs which usually results in negative behaviors.  I, myself have always been for the challenging child bc there is always a reason for the way they act and truthfully they have always been my heros due to us (teachers) expecting them to come to school every day and learn with all of the things that are going on in their personal life:(  And WE think we have problems......

Have been very busy with some personal family issues, will spill my guts when I get a chance.  But will tell you we ended up with oldest daughter moving back home (this is a great thing!) and getting a new puppy (boxer-for her) tonight-don't know if this is a great thing-LOL now we have 3 of them- what were we THINKING!!!!!! though she's so adorable:)

Tried to read up on posts, there are soooooo many, I will try to respond to a few then answer more tom. when I'm up for late tv night:)

Lizzie-Soooo glad to see your note; hang in there, you've come a LOOOOOOONG way.  Love you more than words. Promise I will call or text asap. hugs my dear friend:)

Rosemary-the best thing to prevent kidney stones is to drink water.  Most stones are caused by urine staying/standing in the kidney too long, thus producing stones.  There are 4 different kinds of stones with calcium stones being the most common.  These stones can help be prevented by certain foods-chocolate, spinach, tea, and several other foods depending on what dr you talk with.  You need to know what kind of stones you produce in order to know if your diet will help.  So again, the best preventitive for any stone is drink, drink and drink some more:)

Also, don't remember how long it's been since your surgery and it really doen't matter bc NOTHING will ever take away the FACT that it was UNECCESSARY!!!!!!! and I know that you have the case against your surgeon/s therefore any correspondence is forebidden but for your own peace of mind or shall I say healing; I didn't have uneccessary surgery but I did endure numerous years of rediculous meds and tests with a dr who actually wrote in my chart, "I just don't know what to do." but continued to test & put me on meds, (17 at one point) until I finally left him and sought help elsewhere (BTW- he had the absolute best bedside manor ever) that's when I ended up with in the city where my current drs are and eventully to them.  I wrote a letter to the CEO of his hospital & received a letter back from the ceo & was informed by some people who worked with him that  he was reprimanded for his actions; of course he is still practicing but I didn't take things any further.  But the letter made me feel better.  This is the same thing I am doing with my last urologist who caused all of my difficulties over this past year; I have written the letter in my head, I just need to get it in the paper.  It may help you to write it down even though you can not send it at this time.

I have to go, sorry so soon battery dying.

Love and hugs,

Judy

I posted this on a thread I created called Nervous (because I am thread and forum challenged) but have copy and pasted here where it is better suited.
Hello,

I am going to have a total colectomy next week on Wednesday 26th and am getting nervous and anxious. I have battled constipation for 13 years and was very comfortable with this decision of surgery but as the time looms nearer the butterflies are setting in. My Dr. is very good and I feel confident with him, as he has been informative and kind. However some things are going through my mind that he can not answer in a solid form as each patient is different, so I am hoping some one on this site can help ease my mind. I am not even sure what to ask or post since my mind is reeling and in truth most of my concerns are what ifs and petty vain issues. So please bear with me as I spit them out.

The plan is to attach the remaining 10% of my colon to the rectum. Have any of you had this done successfully or was a temporary stoma needed due to unforeseen reasons and what may those reasons have been?

If a temporary stoma was used, how long till reattachment?

How does this effect clothing?

I have read online issues with anal leakage, is this common once home from the hospital? Were feminine products or depends needed?

Thank you for helping. I am sure after someone answers more questions will come to me but I appreciate any help with the above ones for now.

WOW Allie, thanks for the update on Lizzie! She had 2 good days, then this! I can't believe it (yet unfortunately I can). I so hope they can do something for her. I don't know how much more of this she can take. What a bad 30th birthday. She has been through way to much. Thanks for the update and prayers to her.

Jenise and Judy thanks for the condolences on being with the permanent ostomy though with all that has been "discovered" in my case, the original surgery was unneeded and I had no motility issues. Technically speaking I should not have ever had to join healingwell. But then I would never have met all of you. Today output sooo thick, past few days sooo liquidy. I gotta find out what to eat, when to eat it, and what to drink with what solid. It's a real brain twister.

Thanks for the scoop on the stone issue Judy. Luckily so far I've not had one my concerns are just for prevention. One GI doc said to avoid oxalates: chocolate, grape juice, tea, coffee (all the stuff that thins effluent when it's too thick.) ANother GI doc said you won't get any oxalate stones unless you are using at least part of your colon (which I am not). I do drink tons of water daily. BUT part of my pelvic injuries from the 2006 unneeded surgery is that my bladder was raised even though it was not falling. So I do retain a lot of urine OR sometimes if I have to pee real bad, my bladder just lets go. I think a lot of nerves were injured in the unneeded bladder surgery. But as long as my kidneys stay OK I will be thankful. Yes, it does make all this all the worse as I had no transit issues in the first place and no sigmoidocele. All so unnecessary.

Jenise, sorry about your hubby. I hope he will be OK and can avoid gall bladder surgery. I hope all of us can get settled at some point and never need anything else done to our bodies.

I worry for poor Lizzie. My gut feel is that she will end up with an ileo. It's just a premonition based on all the issues she's had. BUT, if her stoma was made right and worked AND she felt well with it, then there are worse things. I just want her well so much, whatever it takes, as we all do.

Butterfly, I think you may be onto something with your idea that you may have adhesions. They are the hardest things for docs to diagnose because they show up in no test (except a CT entercolysis test, then it is just a narrowing of small bowel, not an actual picture of an adhesion, but at least this much can be seen.) I think you should get to the ER right away and get that CT scan, it may also be able to show some narrowing or thickening of small bowel wall. That can also be a sign of an adhesion. I'd go tonight if I were you. Maybe they can get your surgery moved up even sooner. It's only mid-may. At this point let go of the fear and just roll all this forward; distention is placing a strain on the walls of your small bowel and that is never a good thing.

Snuggle feel so bad for you. At least you know your small is normal. The stomach slowness can be helped by some drug to speed up stomach emptying, so sounds like the colon is the culprit. Keep at it, we all know how frustrating it is to search for help.

Tracy, glad school ends in May for you. Then you can prepare for your surgery. I've been so busy playing catch up from my last trip and planning my next one. I have this whole bucket list I'm working on of places I just have to see. Without the use of my colon I sure get dehydrated, I need one of those camel backs just filled with water (only ostomates aren't supposed to use straws because you suck in air and get gas), maybe I can invent a camel back container with a wide-mouth glass type drinking spout for dehydrated ileostomates. Necessity is the mother of invention.

Praying for Lizzie and for us all.

Rosemary

Marisa -

In regards to your question about getting a GI doc instead of just having a surgeon - I don't think its completely necessary. I've had two GI docs and neither could really solve my issue. They just kept suggesting I keep up with Miralax, try various diets, and drink lots of water.

Lizzie -

What a crummy way to spend your 30th birthday! Hope you come through this!


I talked to the nurse this morning about my gastric emptying test - everything looked normal. Hooray! Tried contacting the Cleveland Clinic and got the run around about getting a telephone appointment. Left a message with his assistant to give me a call back. Hopefully I'll get a call sometime today. Maybe now they'll let me get my colon out??

rylannjacob -

My doctor at the CC said I could do a phone appointment since I live so far away. I think since my other organs are normal.. surely they'll let me remove it??

What doctor did you see?

Ok, I seriously just spent 45 min on a post and poof it was gone!!!! I am so sad :( I had spent so much time on each of you and explaining what happened to me yesterday so after gettin only about asn hour of sleep in the hospital last nite and just getting home I will have to make this short :( sorry my loves....

Basically, bottom line is I have to stop listening to everyone around me and what they want me to eat and when they want me to eat it.....I paid royally for it for the last four days of pure MISERY, nausea, just crappy feeling inside and out and yesterday, my birthday it ended me in the hospital with an obstruction from not chewing properly and eating too much when I cannot do it right now. Yes, I understand I was 94 lbs when I went into surgery and everyone says i look sickly thin, but i have to take it slow or what happened last night will happen again. THANK GOD and my mant prayers to God and to all of you my obstruction broke loose about 11 am and I was able to eat some ice cream and go home :) :) and spend the nite with my girfriends in my condo as we had planned. Much different from the 7 am doctor rounding and my surgeon who did my first three surgeries telling me I probably would be airlifted back to CC again as I could not ride 5 hrs with such extreme pain (it was as bad as waking up from surgery) and thankfully I was getting 2 mg dilaudid every 2 hrs after getting 6 mg in ER.....I am small, but man do I have a tolerance to that pain med!!!!! I left and they asked me if I wanted any pain meds and i said no.....I am just going to try ibuprofen and meds for my rectal and belly spasms. The stoma nurse told me I had a little fungal rash and that my stoma looked great. I know exactly what obstructed me and my mom feels horrible ( i will not be having a turey sandwich anytime soon and it was so small!) but instead I have to eat very very small portions more frequently, like ten times a day as my stomach has not had hardly any food in it for SOOOOO long (since like Oct!) and I stilll have not had a menstrual cycle since December :(

JANIE- THANK YOU FOR THE BEAUTIFUL flowers and ballon arrangement.....SO SO SO sweet of you!!! I tried to call and text you, but it kept saying error....so shoot me your number so I can compare, but I swear we have chatted. I got a new iphone and i am just learning how to use it so i am not sure if something happened. feel so bad i did not get to thank you yesterday.....I cried when i sw who they were from!!!!

Everyone else--- marisa, judy, jenise, hodaya, rosemary......i miss and LOVE YOU all sso much and hope I will be on more. Today is the best I have felt since i have not listened or worried what I was eating at what time and when and how much, etc, etc, etc. Rosemary and Hodaya- I am ok if an ileo is the result, but for some reason both of my families have good feeling about this valve revision and my surgeon said he put extra staples and sutures in as it was almost a five hr surgery, I havent given up yet :) but I am ok with whatever comes my way as ling as I get my life back. I have cried so much in the last two days and i think it has helped me as i never release how i really feel and just put on a show for everyone. I also started Lexapro 2.5 weeks ago and I am on 4 times what my mom is thats how low they think my seritonin is/was, etc. LORI- I love you honey and pray for you daily, you can always call me or text me and I am here for you. I am so glad they loved up the surgery. I hope you get to enjoy Busch gardens...please update us/me....i am where you are or have been where you are not knowing what lies ahead or if i would even make it through. I love you all so much and before my OC dies i better submit this.

LOVE LOVE LOVE YOU ALL, and newbies (sorry I have not responded, but i am here for you all- i have been through almost anything so ask away)

Lizzie

Do any of you without colons have a real problem with feeling dizzy, weak, and lightheaded in hot weather even though you drink a ton of fluid?

I just can't seem to stay hydrated. Even if your small is hooked to your rectum and you don't have an ileo, you still do not possess the water and electrolyte absorption capacity of your colon. How much water or fluid do you take in in a day and how much urine about do you put out?

Maybe I have some undetected issue that is giving me the above symptoms, but everything heart, etc checks out just fine. The heat really gets me and it did not back when I had my colon and before the surgical injury, etc. in 2006.

Thanks, Rosemary

Hi Allie,

Thanks for your response re: the dehydration. WOW Texas, I would never survive there. I think I drink 13 glasses of liquid per day and output a lot less urine than I did when I had a colon. But, like you, so far my kidneys are fine. I guess I should just drink a lot and not worry about it. ( but boo! hoo! I should not even be dealing with all this as my colon, rectum, and small all worked just fine. Mine was a mis-diagnosis of a redundant sigmoid sigmoidocele blocking the rectum, it was just a loop of small intestine that needed to be lifted from the rectum, the pelvic defect which it feel through closed and no sigmoid resection which then strictured and lead me down this garden path. Man what a turn life takes. Rosemary

Hi everyone,

We have family in town from out of state, so I'm just reading and catching up a little.

Lizzie,
I'm so glad you got your flowers. I didn't know it was your birthday, or I would have added a Happy Birthday Balloon with the get well wishes! I'll send you a text later with my number. Hopefully we'll be able to chat sometime next week. I have a house full this weekend, but I want to talk to you. I'm so glad you were able to have a happy ending to your birthday. I hope you continue to do well, and take things slowly. You've been through so much and you know your body better than anyone. We just want you feeling well! I know you want that, too.

Rosemary, I live in Florida and it's so hot here in the summer. I try to drink alot of water, but sometimes I can tell I don't drink enough. I've been so lucky that other than the continuing constipation issues I've felt pretty well. I know in the summer that I really have to stay hydrated, though.

Hodaya,
Hope you can have your appointment early and get some answers. Are you still drinking plum juice and getting up so early?

Welcome to the newbies, and hope everyone else is doing well. Will check back in a couple days...we're having a surprise BD party for hubby tomorrow so I'll be busy!

Hugs,
Janie

Jenise,

Before you have ny more surgery is there any way you could get a full battery of tests at George Washington University and see Dr. Bruce Orkin. From all my research I've done he seems to be the only one (or his facility with Pelvic FLoor Dept) seems to be the only place that has a handle on full assessment and how to interpret the results. I forget where you live. Good luck with all. Rosemary