TOTAL COLECTOMY PART 29

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2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/7/2009 2:18 PM (GMT -6)   
well, here goes part 29.... we're moving soooo fast!
 
it finally rained here and BIG TIME yeah !! kept raining all day and will continue tomorrow which is great!
 
Jen,
SO good hearing from you! we're all so worried about you. i hope the cramping can be figured out. when i had the infection, it also wasn't shown on an x ray and only when it started pouring out through the incision did they know about it. do you feel like your abd is so heavy and painful? there has to be a reason for these cramps. i hope all is figured out soon and you feel better. please keep us updated when you can. you're in my prayers honey!
 
Lizzie, have you called the dr yet? i really think you should, i can't imagine vomiting like this, this is no way to live, so worried about you, love, and praying for you!
 
Rosemary,
thands for the info about the sugar substitutes, but if i eat this chocolate every day will it lose it's effectiveness like all laxatives?
 
Jenise,
just 2 more days left, i'm so excited for you honey! trying to send as many good vibes as possible your way!
 
my surgoen also said no prep, but i went on clear liquids from friday morning, then friday night took my usual laxatives, kept being on liquids on saturday too and sunday, then sunday evening was the surgery. i just felt more comfortable going as empty as possible.
 
LOL, the dr didn't say it about the esophogus, it was me who was kidding. i told him that and he laughed and said it's really cute tongue
 
i'm not taking the mag yet. i had my blood work today. the results should be in 2 more days, then i'll email him the results and he should be able to tell me how much to take from everything.
 
yes my bosses are giving me grief. they say i'm a great employee and they need me, but they decided on a very low salary for me and i can't eccept it. i'll have to discuss that with them, but i so don't feel like it. but i must insist on a little better salary!
 
you know, you brought tears to my eyes saying i'm hiding my sadness. well yeah, i am sad, but i must laugh at times to shake the sadness off of me, otherwise i get too depressed it's suffocating. thanks so much for your understanding and sympathy, you have no idea how much it means to me and i love you for that!
 
BOY! your colon sure looks like a total mess on that barium x ray!! pelz is right, mine looks like a mess too and i couldn't recognize anything in my x ray either. at least the drs know how to recognize everything in there ha ha..  my GI said my transeverse has collapsed too into the pelvic and that my whole colon was twisted and redundant. the dr who did my barium enema was amazed they even managed to do a colonoscopy on me at all.
 
pelz,
poor thing, i feel so bad for you that your whole system is in such a mess. the dr i saw thinks my small intestine is also slow, but surely not as slow as yours. my best wishes to you!
 

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/7/2009 2:29 PM (GMT -6)   
hodaya,

did you try miralax yet? the sugar substitutes have the same osmotic action as miralax, draw water into the stool. I think over time as with anything, you may have to increase the sugar subs, but what a sweet thing to have to do, right? Rosemary

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/7/2009 3:41 PM (GMT -6)   

Think I am going to ER.....thought i was doing ok and did not call...now its after office hrs. I just had 350 calories in last 4 hrs (pudding, ice cream, little turkey) and nauseated as ever and feel like i could puke and getting distended. Trying to get a hold of someone to come with me. will keep you posted if I go.

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
 
"The Greatest Healing Therapy is Friendship and Love"


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/7/2009 5:42 PM (GMT -6)   
Lizzy - did you go to the ER?  Please send me an update. I will look for you on FB later.
 
Poor Jen has to stay in the hospital for longer than expected. Poor thing! She is so unhappy.
 
As for myself...I'm having an ultrasound on my kidneys and bladder tomorrow @ 1:15. My bowels are working fine.  I'm still not hungry most of the day but I do eat a least one meal a day and I snack on rice cakes w/ peanut butter a lot.
 
Sorry I cannot stay here longer...I am really exhausted today.  My energy level is low, low, low.
Amey
 
Reversal 9/2009 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/7/2009 6:13 PM (GMT -6)   
Lizzie,

Hope you went to the ER; hope you got someone to go with you. Please let us know how you do.

Jen, If you see this am glad they are keeping you a bit more to hopefully sort things out for you.

Amey, Glad you are having the ultrasound.

Peltz, You have some great info. Though I have the permanent ileo I will read your link as it seems like so many have trouble after the sub-total colectomy or even the whole colectomy for that matter.

Jenise, Good luck to you. Am thinking of you. Best Wishes. Sincerely, Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/7/2009 6:13 PM (GMT -6)   
Lizzie,

Hope you went to the ER; hope you got someone to go with you. Please let us know how you do.

Jen, If you see this am glad they are keeping you a bit more to hopefully sort things out for you.

Amey, Glad you are having the ultrasound.

Peltz, You have some great info. Though I have the permanent ileo I will read your link as it seems like so many have trouble after the sub-total colectomy or even the whole colectomy for that matter.

Jenise, Good luck to you. Am thinking of you. Best Wishes. Sincerely, Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 12/7/2009 9:21 PM (GMT -6)   
Lizzie I hope you are alright. Worried about you.

My CT scan looked good so they have determined that my nausea, dehydration, and cramping is coming from having two major surgeries in a month. Also the state of my body. I am very weak. I weigh 99-100 pounds and at 5'6" that is not good. I get sick after I eat...last night I was throwing up. So they are going to start a pic line in the morning and give me the nutrition through that. They are also going to have me eating whatever I can tolerate. He will not release me from the hospital until I can eat without cramping or having nausea. I also have to show that I am gaining weight. Basically he is hoping to send me home at the beginning of next week though he did say perhaps this weekend but I'm not holding my breath. I am really hating this right here at Christmas time. I am missing out on so much with the kids. My husband and the kids decorated the tree today...I always do that with the kids. I am very sad and have had more than one breakdown already. This is going to be the longest week , week and a half of my life.

I am thinking of everybody. Jenise good luck to you. I'm sure everything will go great with you.

Love you all and appreciate all your support.
Jen

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/7/2009 9:26 PM (GMT -6)   

Quick update:

Sorry on had 4 mg dilaudid.....CT scan showed HUGE 5 cm ovarian cyst and constipation. NO bowel obstruction, but he thought I had one. Cannot concentrate and will update later.

Jen- Please update

Amey- Good Luck with ultrasound, thanks for your prayers

Rosemary- I emailed you back AND THANK YOU for the nice words about my pictures.

It has taken me forever to dtite this b/c of all the medicine from ER

Love you..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
 
"The Greatest Healing Therapy is Friendship and Love"


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/7/2009 11:14 PM (GMT -6)   

Ok, been home about an hour or so and just thre up twice.....What is going on?? So frustrated...

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
 
"The Greatest Healing Therapy is Friendship and Love"


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/8/2009 4:31 AM (GMT -6)   
Jen,

I know this is a bad time of the year to be in the hospital. BUT, be glad they are taking responsibility (unlike my original 2006 surgeons). Your surgeons are doing what you need done. Nutrition, monitoring, glad you got the CT scan and all looked well. Be glad they are going to get you well before sending you home so you won't bounce back and forth to the hospital over the long term. I think the timing of this is throwing you, but hang in, a good life-long result will be worth sacrificing one week near Christmas. (I realize easier said than done, especially if one has children.)

Lizzie,

Thanks for the message. I think I'm slowly getting the hang of face book. I'm 53 (and lucky to be) but I think "my generation" is a little slower to pick things up in the field of Cyberspace! Having younger friends is great; I learn a lot from them. Was your 5 cm ovarian cyst found to be a simple cyst (just fluid filled) on ultrasound? This kind is "always" harmless. Do check with your doc on this. Also ask if you can have a CA125 blood test just to be on the safe side. Glad you got to the ER. What did they say to do about the constipation? (to "call your doctor"? ) Likely. So you call your surgeon at CC later this morning? Right? I woke up again at 3 a.m. (just a frustrating thing I do sometimes) Hope I can get back to sleep. Let us know what your CC surgeon's opinion is. I think you are nearby to them? Is it the ER at CC you went to? Good luck, Rosemary

Jenise,

GOOD LUCK, Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/8/2009 6:55 AM (GMT -6)   
Rosemary, thanks for the well wishes! I often have nights that I'm up at 3 Am.. I blame it on my age (48) and perimenopause! I was up early today.. as I'm getting a bit more nervous! I really am pretty good with computers.. but that facebook thing is pretty confusing to me!! All these people inviting me to "farm"!!??" I actually closed the account as I was clueless!

Today, clear liquids, and I'll have to get up at 3:45 AM.. in order to reach shower and reach the hospital by 5:30 AM. I haven't packed my bags yet, which I'll do today. I know once I am actually there.. in the hospital, I will be a lot more afraid!

Sarah, that was a very interesting link.. I've bookmarked it! I'm hoping that by keeping part of my colon things will work well. I really have nothing to lose.. since there seems to be many who have issues after the whole thing is removed.

Hodaya, thanks for starting our new part.. we've all been busy posting! That's awful about your job and pay.. I know it makes you feel so unappreciated. I hope they either change their ways or you have great luck in finding a new job.. with the pay you deserve. Keep your chin up.. (HUGS)

Jen, that sucks to have to stay at the hospital for so long. It's awful.. and I can't rest well when I'm there. I'm sure that they just need to make sure you go up hill from here, and not down hill. You must be so very thin looking!

Lizzie, Hope you get to CC soon... must be awful feeling so sick!

Amey, good luck with your test today, and hope they find your issues!

My.. many here are still going through so much! prayers and thoughts with all of you.
~Jenise~


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 12/8/2009 8:06 AM (GMT -6)   
Just a quick passing through--

Jenise,
If I don't get another chance to post before your surgery, GOOD LUCK. You know we'll all be here praying for you. I just know you're going to be one of the lucky ones who have no complications:) Please be sure to have your hubby keep us updated!!

Lizzie,
So sorry you're still having trouble. Can't the hospital just keep you until you can eat without throwing up? Seems like something is really going on that shouldn't be. You need to have some good days!

Jen,

My heart goes out to you and your family. I can't imagine how you must feel not being home with your kids and husband. BUT if being there for another few days means you can go home and enjoy the holidays, it will be worth it in the end. I hope you're able to gain some weight, you must be so thin...and your energy level will be better too.

Hodaya,

So sorry about your employers. I hope you're able to work things out and not have to leave. I don't know how employment is in Israel now, but in the US it's not a good time to be looking for a job!

Hugs to everyone, back to work.

Janie

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/8/2009 10:51 AM (GMT -6)   
Hi.. more nervous!

Thanks Janie (HUGS)

Just received a call from my surgeon... he and his associate (Amey's surgeon) just reviewed all my studies again, and are both in agreement of what needs to be done. They will be doing the revised rectopexy (for the prolapse rectum), however, this means the surgery has to be open, not laparoscopic. He didn't want me to be surprised when I arrived in themorning.. so I'm glad he called. I do feel I'm in good hands.. but scared! Going to pack up my things now.. and watch a movie to try and not think about my surgery! I'm sure I will have a hard time sleeping tonight.
~Jenise~


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 12/8/2009 11:01 AM (GMT -6)   
Jenise,
Sounds like you have a wonderful surgeon to be so concerned about you and your feelings! You're gonna be just fine:)

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/8/2009 12:26 PM (GMT -6)   

Quick update:

Jenise- I agree with Janie! Your in good hands and I am praying for you...I have good feelings about your surgery and recovery. Hope your hubby will be able to keep us posted. I will think of you tomorrow..I will be driving to Cleveland and bearing the blizzard that is coming today....but you will be in my thoughts.

So I just returned from rectal PT and she said I am "clinically regressing". My tone was over 20 today and my external sphincter that is usually contracting but usually about 7.5 was up to 17.5. When I am thinking back to April when I had my emergency ileo I do not think anything significant showed up on the CT and that is why after 8 days with NG and no improvement he went in open to find it was my rectum causing all the issues. So I am not sure last nights CT not showing anything significant is good or bad. I just had some lunch and again feel very nauseated and pain in right lower abdomen. I was given zofran and percocet but am afraid to take the pain meds and set myself up to fully obstruct. I have only had brown liquid out since Sat. My cyst is on the opposite side of pain and think it was an insignificant finding even though its large. I have, according to ER doc had one with almost every CT scan just varys which side its on? I have my annual tomorrow before I leave for Cleveland and will let her know about the cysts...but like you said, Rosemary, they are "harmless". I just hope I can get down to Cleveland safely without anything happening before....

Hope you all are well.

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
 
"The Greatest Healing Therapy is Friendship and Love"


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 12/8/2009 3:48 PM (GMT -6)   
Lizzie,

I just want to say that the SMA syndrome doesn't necessarily show up on CT images unless you specifically consider this option and look for it. I have read the story of a girl who suffered from projectile vomiting and was diagnosed with gastroparesis. But then she searched in the internet and detected the option of having SMA syndrome. She then asked for an entero CT again and although she had one before in which nothing seemed to show up they found the duodenal compression/SMA syndrome in the second entero CT since they specifically looked for it.

Did you have a normal CT without contrast medium? It is important to have a entero-CT with an oral contrast medium since the compression mostly only shows up when "food"/contrast medium reaches the duodenum.

The girl finally underwent surgery to correct the compression and did better.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/8/2009 8:10 PM (GMT -6)   
Lizzie,

Ask about the entero CT Peltz is talking of. AM not sure if she means CT entercolysis but that could be the test.

Jen, Hope you're doing better.

Jenise, GOOD LUCK. Good thing they called you about it being open; sounds like they really care and are really planning this.

Today I read my tribunal materials which will be used Friday. As it turns out even my rectocele was very small and not in need of repair. SO, my defecation issue was not surgical! It was one of these functional issues that was not tested for. No prolapsed vagina, bladder, or rectum in spite of the fact that I'd had the hysterectomy 12 years prior. I needed to find out, but I cried all day. I went through all of this for nothing. The defecogram was read wrong, then not even that was used to plan the surgery. The only surgery I needed according to reviewers was my right liquid benign ovarian cyst drained. Not even that right ovary needed to be removed. I went through all I went through for nothing. I have to get strong if my case goes to trial and get strong to enjoy my well earned trips. I am sadder than sad at this news. But I was the one in search of the truth. Sometimes the truth hurts. BUT I do plan to deal with this on a broader basis than just my suit once it is settled. My 2 original surgeons do this template of 7 procedures to 2 women per week, then do not follow up. 8 suits, multiple deaths, and according to another atty I met earlier in the year, other women trying to seek legal help from damages from the same procedures. Guts all scarred in. My story is soooo different than any of yours. Mine is unconscionable. But, for some weird reason, I must have been the one selected by fate to blow the whistle and boy am I going to!

Take care, Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/8/2009 10:00 PM (GMT -6)   
Jenise, thinkink of you honey, GOOD LUCK! you'll be in my prayers, i'll be praying real hard for you!! go positive, o.k? hope hubby is informed on how to use this board and keep us updated.

Jen, i'm glad they did the CT. i hope you get better soon, honey. you're SOOO thin, i hope the TPN helps a bit. i'm praying for you. i'm sure it's not easy being at the hosp this time of yr, but it sounds like you're in good hands and your dr is looking for your best interest, i know about the breakdowns, sweetie, hang in there, it'll all be worth it in the end.

Lizzie, GOOD LUCK with CC!! praying for you, honey and want you to finally find a solution to all of this. we all deserve to finally lead normal lives, it's so unfair we can't do so many thigs b/c of our prob.

i just don't have much time and have to get ready for work. love you all!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/9/2009 2:27 AM (GMT -6)   
I'm up and ready to take my shower in a few minutes. I slept good for a few hours.. but I'll be sleeping all day today!

My uro-gyn called me last night too... they all had another meeting reviewing my studies! He is planning on being here and will correct the rectocele through a vagina repair. He said hopefully, all my issues will be forever over after this one surgery. I'm so happy.. as I was afraid I'd have to face another surgery to someday address the rectocele. Sounds like I'll have a few things going on today!

Thanks again everyone for your thoughts and prayers!

Lizzie, have a safe trip to CC today. I've already prayed for you!

Rosemary ((hugs)) it really is unconscionable what was done to you.. and now you have to endure a lifetime sentence! I just hope in the end it hurts them big time in their pockets. You have to try and focus on that, and not the what should have been. You need to enjoy those cruises...none of this is your fault at all!

Hodaya, I've tried to instruct hubby.. but if it fails, I have Amey's email address and I'll have him email her.

Jen, thinking of you - hope you're home soon!

Bye everyone! I'll check back as soon as I can!
~Jenise~


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 12/9/2009 9:45 AM (GMT -6)   
Jenise, good luck and please post as soon as you are able.
I will be praying for an easy recovery and that the surgery is a success.

Lizzie, my heart just breaks for you. I can't imagine throwing up like you have been.
Surely, the doctors will figure out what the problem is. This can not be normal!
As far as being constipated???? Another mystery. Will you have another ileostomy
installed? Because if you have to do this, hopefully the doctor will build you a better stoma.
Do you think it is the laxatives that are causing you to throw up?

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 12/9/2009 10:30 AM (GMT -6)   

Leaving for CC in the next half an hour....the weather here in MI is awful!! and we are expected to get close to a 1.5 ft of snow! Thanks for all your prayres ans well wishes. I should be back tomorrow late and will check in. I just got the "ok" from my director of nursing to go back to work Dec 21 and I cannot wait to start helping people. I cannot forsee the future, but for now thanks for keeping this personal stuff off my FB since my manager is my friend and thanks for all your continued support. I did not want any of this to stop me from doing what I love...and thatis being a nurse and I refuse to let it. I am still having horrible pain in my right lower abdomen and have not had a BM in 1.5 days at all...I was out of laxatives and the roads were horrible last night. We will see what Dr. Zutshi has to say...again, thank you for all your prayers!!! Love you all....if there is an update on Jenise or Jen I pray it is a good one. I am prating for you all. I have not had a vomiting episode in two days...just nausea and pain. I know I will know when I leave CC what I m facing....good or bad...and I know I have all of you.

Love you all.

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
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/9/2009 11:25 AM (GMT -6)   
have a safe drive, Lizzie. we'll be here when you return, hoping to hear something good.

Jenise, you're probabaly cant see this now, but thinking and praying for you.

Rosmary, i havn't started taking the normalax yet. i'm enjoying my sugarfree chocolate and it helps for now. i want to try the treatment the new dr i saw gave me. i thought it'll be 2 days for the results of my blood work, but i looked again and it says the results will be only on the 27th of this month, so only then i'll be able to email him the results, so he can give me further instructions.

pelz, thanks so much for all the info you're providing us with. so thoughtful of you. i put it in my favorites and very interested to read it.

Amey, how did your u.s go?

Janie, the market is not so great here either and it's hard to find a job. i don't have much time or energy to both work 8 hrs every day and look for a job. i'm just checking the paper twice a week, when there are job offers, it's not really looking, but who knows, maybe something will come out of it. after all, i've found my current job the same way, through the paper, and have been there for 7 1/2 yrs. they've been really o.k with me all these yrs, and i don't know why they are suddenly giving me such hard time.

my goodness, Rosemary! this is truly unbelievabe... anismus! i guess that was all you had that caused you the devided bms. from your description it sounds like it wasn't that sever. it's not a perfect way to live, but considering the fact there are still no cures for this one, you would have been better off doing nothing about it. maybe some biofeedback, but other than that, there's really nothing to offer for this. i hope you kick their butts!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/9/2009 1:06 PM (GMT -6)   
Hodaya,

What tripped me up was that my 2005 dynamic MRI showed normal widening of the anorectal angle for pooping and normal angling for continence. Thus, no anismus was diagnosed. In the defecogram done in spring 2006, same normal working of this angle on a functional basis. Meaning the puborectalis muscle worked normally. Again no anismus. The sigmoidocele was diagnosed which was not a loop of sigmoid colon descending into the space between rectum and vagina but only a loop of small intestine. But this did not prevent my rectum from emptying. Did not find out about this until 2009 review of the defecogram.

HOWEVER, there was something called "constitutional dysfunction" of thie puborecalis muscle. The radiologist who figured it out said, "The push is present and effective but it is not directed toward the anal channel due to an insufficient widening of the anorectal angle and the descending of the perineum. The insufficient widening of the anorectal angle is on constitutional base: there is no functional or anatomical alteration of the puborectalis muscle. In my opinion a surgical correction is not recommended. This I did not find out until analysis of the defecogram in 2009.

My divided rectal emptying did make me late for work or miss mornings of work depending on if it took me 2 or 4 hours to finish bowel moves every morning. BUT I was passing some complete moves and some incomplete moves. All tolled I was going a ton every day. So Yes, knowing what I now know I would not have had any surgery and just gone to part-time afternoon work.

But, with radiology misdiagnosis, 3 colorectal surgeons misdiagnosing, then the ones I went to giving me wrong info that I also needed bladder surgery and my good ovary out, then far exceeding consent, then the unneeded sigmoid removal done incorrectly, fate spun out in a huge way, all beyond my control. Tests that were supposed to be done that were not that I didn't know of at the time. The more I'm learning, the more I am seeing this was not my fault. BUT......hence the legal action. My learning from all of this is, if you have some issue that is not life threatening keep it even if it's a big inconvenience. And the info you are given is only as accurate as the person giving it to you. Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/9/2009 1:55 PM (GMT -6)   
Rosemary,
as far as i know, a loop of small intestine descending into the space between rectum and vagina is called an enterocele, but i have no idea what the procedure for that is. i think they may put a mesh or something to lift it, but i'm truly not sure.

my prob now is that if i eat solids, my stools is very formed and i hardly have bms and only by eating soft-liquid diet i can keep things flowing, but even then, it's again divided bms. it takes me now 2-3 hrs in the morning to finish and then in the evening i'm bound to my home too. if i eat things i shouldn't, then i must take something to help me go, cuz otherwise i get stuck terribly. so what i'm thinking is that b/c of the fact that by eating only little solids i get so plugged, it means my smalls are also slow and in addition i also have a functional prob within the rectum that causes incomplete evacuation. i'm very discouraged right now, but i'm hoping the new dr's treatment can help me. i can live with the divided bms (i guess..), but pleeeaaase.. i just CAN'T keep eating: eggs, fish, cooked and peeled carrots, zuccini, onion, cooked and peeled frutes, just a bit of oat bread per day and that's more or less about it.. of course sherbet and all kind of sweets i can also handle but too much high calories.. not pratical. this limited list is imposible to live with!

bowel functional probs are so complicated and unfortunately drs still havn't figured out a way to deal with it. i'm so sorry you fallen into this mess, Rosemary.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/9/2009 3:45 PM (GMT -6)   
Hi Hodaya,

Your diet sounds a LOT broader than mine even with a working ileostomy. I must limit due to the possibility of stomal food blockages. None yet but not want any. Yes the surgery for the enterocele (internal prolapse of SMALL intestine) is just closure of the rectovaginal septum which can just be up through the top of the vagina. No mesh needed. But in my case even this internal prolapse of small intestine did not prevent the rectal emptying. Enterocele's usually present only after the rectal contrast is passed as did mine.

By the way, Tribuanl (initial screening process for my suit) has been postponed. Was supposed to be this FRI. Dec 11. Judge got rescheduled to another town. Oh, brother, I gotta stay well and get on that cruise. One could just loose their mind sitting around waiting for justice to be served.

We have a foot of heavy snow here. Yuck. Good luck with your issues and I hope the doc has a good idea. I really fell into a heap of trouble that almost cost me my life. Be careful. But in the meantime, enjoy that fake sugar. I'm about to have baby food meat, cracker, yogurt and protein powder. Then get out for a walk. Then have some ice cream. Yum. I gotta start taking iron supplements. Rosemary
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