Total Colectomy Part 35

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tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 5/19/2010 11:09 AM (GMT -6)   
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!
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/19/2010 12:24 PM (GMT -6)   
Oh my. I hope your husband is doing much better. That is a scary temperature!
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 5/19/2010 12:55 PM (GMT -6)   
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!
<UL>
* Marisa

* 1999-Appendectomy with Cecopexy

* 2001-Ruptured ovarian cyst

* 2004- Emergency hysterectomy

* Lifetime Chronic Constipation

* 6-1-09 Total open colectomy with illiorectal anastomosis
</UL>

* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/19/2010 5:07 PM (GMT -6)   
Jensie, yes, I can feel the stool when I press on my stomach....my husband can too.I am always saying, push here, listen to my stomach, etc. I can't believe I even talk to him about such disgusting matters, but hey, who else can I talk to??? LOL HEEHEE

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 5/19/2010 6:13 PM (GMT -6)   
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

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/19/2010 7:22 PM (GMT -6)   
Lori,

I'm so sorry you're having so many problems. Please keep us posted on how you're doing.

L, Janie

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 5/19/2010 9:30 PM (GMT -6)   

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

 


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


Jacoby
Regular Member


Date Joined Nov 2009
Total Posts : 36
   Posted 5/20/2010 9:43 AM (GMT -6)   
Hey everyone!

I haven't read up to see how everyone was doing but just wanted to give a quick update. Last we talked I couldn't even urinate. Well they found out I had an ileus like everyone here said. They shoved the NG tube down my nose on friday night. Honestly the worst experience of my life. From friday to monday I had the tube down my nose and thankfully I dont remember much except for being miserable. I guess my whole body just kind of gave up when the NG tube was down there because my mom said it looked like I was ready to check out at any moment, and a few of the doctors commented on that as well. But I made it :) Monday when they pulled it out I felt like a whole new person.

I actually just got out of the hospital late last night so I'm finally home!! Only 6 days later than anticipated but I can't complain I made it back here!!

I promise I'll read up and get the update on everyone soon! Hope all is going well. Love and prayers!

ColonBlow2010
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/20/2010 1:34 PM (GMT -6)   
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.

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 5/20/2010 9:02 PM (GMT -6)   
Hi everyone,
 
Darlene posted this update on Lizzie in another thread. I'm pasting it here so that everyone is aware of the situation. Keep up those prayers for Sweet Lizzie!!
 
Hi, this is Darlene (Nutz), Lizzie's (Xtreme Misery) friend.  I couldn't figure out how to update the total colectomy thread so I thought I would start a new topic with the same heading in hopes that you all would find this.  Some of you may already know this but today is Lizzie's 30th birthday!!! Unfortunately, instead of celebrating, she spent the day in lots of pain and very distended.  I just texted her and found out that she is on her way to the emergency room:(  We all know that Lizzie has been to hell and back...she needs our prayers more than ever right now.  I just wanted to update everyone per her request.  Take care everyone and hoping you're all doing well.


Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009. Reversal February 1, 2010
 
 
Allie


Life-long GI problems.
- 2004: Motility problems took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic    debilitating pain due to a small intestine dysmotility.
- May 2010: Doctors suspect rectal dysmotility; another manometry scheduled for the 18th; sigmoidoscopy scheduled for the 26th (checking for strictures around the anastomosis).
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/20/2010 11:07 PM (GMT -6)   
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

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/21/2010 6:12 AM (GMT -6)   
Jacoby, so glad you're home... you made it girl! take it easy and rest, don't over do it, go slow with foods, don't eat large meals and just take care of you now. my gosh, yeah the ng tube is one of the worst things, i remember too well how awful it was for me too, but it wasn't as bad as it was for you... so glad you've made it and are o.k! hope you keep doing good!

Darlene, thanks so much for the update on Lizzie... poor girl, so sorry to hear that and i hope it's nothing major. if you know anything more about her condition, pls let us know, we're all praying for her.

hello colonblow and welcome! you've found the best place for info! i had my colon removed for constipation as well, they removed all of it, but 20 cm of rectum and attached the end of my small intestine - that's the ileum - to my rectum - no stoma was needed. although i still have constipation issues, this is still better than before surgery and i'm glad i had it done.

usually when a temp stoma is done, it takes about 3-4 mons to attachment surgery. but the chances this should happen are low, so i hope you don't go that road.

i don't know about clothing, since i've never had a stoma.

about leackage, well i had it only at the first 1-2 days after surgery once my bowels woke up, but then it totally stopped and didn't have to worry at all about it. though lately when my stools is too liquidy it can happen if i don't go on time. but anyway, most of the girls here don't have that prob at all.

i wish you the best of luck, my dear! you're doing the right thing!

Jenise, how's hubby doing?

Rosemary, i think you're right, if k pouch causing so many complications, i'd say Lizzie will be better off with the ileostomy. i hope the drs can figure out the best way to help her.

i'm having the scope earlier on June 28 at a different place. the secretary there is SOOOO nice and compationate and went out of her way to set me on the nearest appt. but my surgoen is leaving the country for 2 whole weeks and will be back only mid June.... so i won't have a chance to see him with the results anyway before he leaves :(( well she said if there will be a cancelation on the 25th, then she will squeez me in, so if that happens, i may have a chance to see him, but i'm not keeping my hopes up on that.

Judy, good to hear from you!

Lori, is it going better now with your tube?? poor thing, i hope you're hanging on till surgery, it'll be here soon and will hopefull improve things significantly for you.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/21/2010 7:25 AM (GMT -6)   
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??
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


rylannjacob
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/21/2010 8:50 AM (GMT -6)   
snuggle[


I just had surgery at the cleveland clinic in weston Fl on May 3, 2010 I had a subtotal colectomy with IRA for colonic inertia that developed after a mesh rectopexy. The surgeons there are top notch and really listen to you!! I live in Iowa and have been flying back and forth for appts, it is well worth it. I had previously been to the University of Iowa and Mayo Clinic, while they were good they never solved my problems with colonic inertia. I assume you have had a stiz marker transit study. All my markers were present at day 5 and basically scattered throughout the colon. I had to do this test 4 times and always the results were the same.


Best of luck

mesh rectopexy 3/07
Biofeedback= did not help
removal of mesh 9/09
subtotal colectomy with IRA 5/10

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/21/2010 8:56 AM (GMT -6)   
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?
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


ColonBlow2010
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/21/2010 12:22 PM (GMT -6)   
Everyone here is so kind and knowledgeable. Kudos to you all. Even though my friends and family have been very supportive and we laugh through my condition, it is nice to find a place where others truly know what I feel like and am going through. Your stories are all my own. There have been so many times where I would tell my husband "I just wanna poop like a normal person.". Here in this forum, I feel normal again.

Thanks to all who responded to my post and for all the other posts I have read over as well. All this personal information has really calmed my nerves and made me feel like its going to be ok, I am not a freak of nature but rather one of an elite crew.

Looking hopeful again and counting down till surgery on Wednesday! :)

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 5/21/2010 1:21 PM (GMT -6)   
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
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
Bowel Obstruction 1-7-10 through 1-19....PICC, Tpn/Lipids...transferred to Cleveland Clinic 1-19 for BCIR (k-pouch). K-pouch surgery Jan 25 by Dr. Dietz in CC. Muiple complications (blood clots, hemmorrhage, three abscesses) After near six weeks in hospital home recovering. Now developing some type of RA and aving issues with pouch. Going to get scoped this Thursday 2/8 in Cleveland. Say your prayers. Worst fears came true....another major surgery.
-Slipped valve and replacement tube in until surgrry May 7, 2010
"The Greatest Healing Therapy is Friendship and Love"


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/21/2010 2:58 PM (GMT -6)   
Lizzie,

Glad to hear it was only a food obstruction and nothing to do with the pouch going wrong. Tell everyone that you have not been able to eat for over a half year and that medically you can't just eat like a "normal Person." There is this whole thing with refeeding syndrome that these people do not have a clue about and are not qualified to judge. Their intent is no doubt good.

But here are my recommendations; eat like I eat and I've had an ileo for 2+ years: small meals, small amounts, hunt and peck, throughout the day. Here are some suggestions based on your own tolerance of these foods: cream of rice cereal, milk (8 grams of protein in 8 ounces), ice cream (LOADED WITH CALORIES), pudding made with whole milk (calcium and protein), cottage cheese, scrambled egg well chewed, white flour crackers well chewed with a bit of milk or water, juices loaded with calories, jello, chicken broth has salt you need, gerbers baby food meats in jars. The chicken and gravy and turkey and gravy are not bad. Just add salt. Nuke then on 50% power for 30 seconds. Each jar had 10 grams of protein. Yogurt with SHOW ME THE WHEY protein powder. 8 grams of protein in the yogurt and 12 in one scoop of the protein powder. Be sure it is well blended. It is easy to take in 50+ grams of protein per day. You should actually take in 65 grams per day to get back menstrual cycles. THat is the first thing that goes in people who are starving. I regained my lost 35 lbs in only 3 months on this regime and you can too.

Now a bit about what I know of refeeding syndrome. I am not a doc. but here's what I learned first hand. Your metabolism has slowed down to help you stay alive basically on no food since October. You will regain weight QUICKLY if you are consistently able to eat only the above things. Reason is, your metabolism will stay slow for a long time. It may never regain normal; mine has not and I had a year of being unable to eat. Because your body is not burning calories at the normal rate, you will gain rapidly. Be careful not to gain too much too fast so you don't ditort the inner pouch. I am going to ask if my weight gain will affect my stoma. DON'T eat mashed potato. I'm only telling you this because of my bad experience. Though they are mashed, they are fibrous if that makes any sense whatsoever. Even blended veggies. THe fiber is still there. In time, like over a year, you will be able to experiment with tiny amounts of things well chewed, but you need to take it really slow. I hope so much this works for you. If you are lactose intolerant then they have lactaid pills that do wonders. But soft, gush for now is what to do regardless of who says what. Sincerely, ROsemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/21/2010 3:03 PM (GMT -6)   
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

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 5/21/2010 4:25 PM (GMT -6)   

Snuggle- I so hope that they give you the green light for surgery! I never understood the logic behind not doing a colectomy because of a suspicion that the whole system is slow. I think of it like a Los Angeles freeway at rush hour. If the freeway (colon) isn't moving, folks on the on-ramp (small intestine) certainly aren't going anywhere fast, either. Even if you do end up having problems with your small intestine, you will feel better with the colectomy. Although I have significant motility problems in my small intestine, that total colectomy saved my life.

 

ColonBlow- So glad that you feel at home here! I know what you mean...wish I had found this site six years ago! Who would've thought that "pooping like a normal person" would be such a tall order? I will be praying for a smooth and successful surgery on Wednesday. Please keep us updated!

 

Hodaya- YAY for having the scope earlier! Praying for a cancellation so that you can see your surgeon! How are you feeling?

 

Lizzie- I'm so glad that you're past that obstruction! My heart all but stopped when I saw that you had another trip to the ER. YES- eat only what you know your body can handle, and only when you know that it will go down. Family means well, but that refeeding syndrome is one tricky and stubborn little beast to tame. Stick to the puddings, ice creams, yogurts, and other things that slide down easily. The less work your GI tract has to do, the better. Graze throughout the day. As you get stronger, your cycle will come back. Sometimes it takes awhile...there were times when I went years without a period, and when I was able to gain enough weight, it came back. The last one I had was in December, until it showed up a couple of days ago, and now I'm realizing that I really didn't miss it that much (ouch)!  

 

I hope and pray that things go smoothly from here on out. Never ever, ever give up! I know you can handle ANYTHING.

 

Sorry about the disappearing post act. Love technology, but it's so irritating when that happens! Now I type all of my posts in a Word document, then copy/paste.

 

Rosemary- I have the same dizzy/weak/lightheaded problem that you do. I live in Texas, and many of our summer days are over 100 degrees and very humid. And to think I used to be able to go work six horses a day in this heat...not anymore! I'm not sure exactly how much I drink in a day, but it's a lot. Way past the eight 8-ounce glass rule. I am never without a glass of water or a water bottle, no matter how short any errand run may be. For the amount of fluid I take in, I'm a little surprised that my urine output isn't more, but my kidneys are perfectly fine.

 

High sodium foods really make me sick. I will never forget when I was in the hospital recovering, they brought me some chicken broth. It smelled so good, and I only had a little, but it made me so nauseous. The doctor kept upping the dose of the anti-nausea meds, and they didn't touch it. I have the same problem with Fleet enemas- nausea, shakes, and elevated heart rate.

 

According to my Mayo doc, most of what a person drinks is absorbed in the first foot of the small intestine. That's why Miralax works so well for some. It prevents that water from being absorbed right away, and allows it to reach the colon. There is absorption that we're missing out on because we don't have colons, but I didn't get the impression that it was enough to really cause dehydration issues. But, then again, everyone is different. Maybe a complete panel of blood work wouldn't be a bad idea?

 

A happy Friday evening to all!!

 

Allie

 

 


Life-long GI problems.
- 2004: Motility problems took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic    debilitating pain due to a small intestine dysmotility.
- May 2010: Doctors suspect rectal dysmotility; another manometry scheduled for the 18th; sigmoidoscopy scheduled for the 26th (checking for strictures around the anastomosis).
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/21/2010 4:41 PM (GMT -6)   
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

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 5/21/2010 5:26 PM (GMT -6)   
Hi Allie,

I just wanted to say that I am back from my hospital stay for the bladder issues..so far it was pretty disappointing. Don't have the strengh to tell more I will do it within the next days..

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/21/2010 9:11 PM (GMT -6)   
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

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 5/22/2010 7:48 AM (GMT -6)   
Lizzie, what a great surprise to see you post! Happy Belated Birthday - surely not a fun birthday when you have to spend it in the ER! Thankfully, it sounds like it was from eating - just be careful. You are in my daily prayers...
 
Hubby is doing "okay" still has some uncomfort.. but he sees the GI on Monday. He has muscle spasms in his stomach, and I think it is just a reaction to the state they placed... hope so, as we are suppose to be going on vacation!
 
I made an appointment with my GI.. just confused as who I should see.. GI or colon surgeon? I'm so afraid that my urogyn is going to repair the pelvic issues and rectocele.. but I'm afraid they are missing a thing or two! First, my stomach is so big and distended.. way more than before I had surgery. I don't know if it is because the cut and separated my stomach muscles with the vertical incision.. PLUS  I think I might be developing an incisional hernia from the colon resection! When I sit up, there is a small bulge on the right side.. and than there is that tissue that protrudes out when I have a BM... which could mean the rectopexy collapsed or it's prolapsing hemorrhoids...  PLUS that fact that I really hardly go when I go! If I take just a little too much MiraLax - I end up like Janie - going several times, just a little each time! I just know my colon is not emptying like it should be.. I have a 64 lb. 8 yr old and he goes 2-3 times as much as I do! Even my 5 pound puppy had better BM's than I do. Gosh - I hate all this! I just don't want to go back for surgery in July and than they figure out more should have been done...
 
Hello to everyone else.. I wish I had more time to write everyone, but I'm heading out the door - and I'm late! Have a wonderful weekend!
 


*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/22/2010 8:24 AM (GMT -6)   
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
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