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TOTAL COLECTOMY PART 35 THREAD 14

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Posted 7/15/2010 10:21 PM (GMT 0)
Val, oh how I hate bowel preps. YUCK Is it moviprep? Beware, it is disgusting...tastes like salty lemon pledge. I am shuttering just thinking about it. Be sure to have some miralax and dulcolax on hand just in case you can't stomach it. That stuff made me barf....so, I took a few dulcolax and drank about 12 doses of miralax. But, I started a few days early increasing the miralax. I made sure I had watery stool a few days before the prep so it wouldn't be so hard cleaning myself out. Good luck, Tracy
Posted 7/16/2010 1:39 AM (GMT 0)
Allie,

glad to hear info about Lizzie.

I am still very miserable, even more since I have had bad reactions to the immune therapy.
Unfortunately I only expereince the possible side effects but no improvement at all which makes the docs some angry.
Still unable to find appropriate support for the endocrinonolical part; I feel as if each doc happily put a stope in my wheel.


I also get the joint and nerve pain and when it hits it's terrible but my recently repeated antibodies/ANAs came back normal as well.

I think that a significant part in your transit time must be attributed to the rectum which acts like an obstrcution also for the distal small bowel. If you are like me at least in the rectal issue (and it does sound so) I could add 4h and more to the mouth-right before rectum transit that was already delayed subsequently to the diffuse motility. But the rectum would not let anything out and the stuff would also be not transported within the rectum, from the top to the bottom..so it became just longer and longer and loopier as well.


Sarah
Posted 7/16/2010 2:11 AM (GMT 0)
Tracy - It isn't Movieprep, thank goodness!  It is HalfLytely & Bisacodyl tablets.  I've never even heard of HalfLytely before but assume it is like GoLytely. 

Each Saturday night I take a handful of Dulcolax so I can "go" on Sunday.  The Saturday before surgery I'll follow the usual routine.  Tuesday I am supposed to start the prep so I'm planning to eat light Sunday and Monday.  Perhaps that will make the process easier.  Unless you have a better idea. 

Like you, I HATE bowel preps.  And I've had more than my share of them over the past five years.  Maybe this will be my last one.  yeah

Val 

Posted 7/16/2010 2:40 AM (GMT 0)
Hey ya'll... I was out of town for a bit and so I haven't been on the boards much.

Went in for my first biofeedback appointment.  The lady was really good at explaining everything and knew what I was "talking about."  While I was hooked up my "resting pressure" was around 20.  Apparently you are supposed to be flatlining??  She also had to use stimulation at the first appointment - which she says she hasn't done in years.  Hooray for being broken.

I brought home my list of exercises to do every night.  She said 90% of her patients have undiagnosed anxiety.  I'm diagnosed and I think I have it under control pretty well...  I thought it was also amusing she said that most of her patients are anal retentive.  I kind of giggled at that one since everyone knows I am :) devil

I'm not sure if I have much faith in this, but I'll definitely try my best!  I've started thinking more about getting a temp pouch just to see if my muscles will relax.  Any input?  I thought removing my colon would fix things, but now that I realize my outlet issue is so bad.  Arrrrgh.  mad

Sorry some of you seem to be struggling these days.  What's the status on Lizzie?

Tracy - how are you recovering?

 

Posted 7/16/2010 3:31 AM (GMT 0)
I gals, so doctor is pretty sure that I have some kind of autoimmune disease. Got a shot of cortizone in my buttocks, as he called it, and it is still so sore. Took some bloodwork and will find out exactly what is going on. My next appt is on the 2nd. Pain is getting worse by the day. He said something like Lupus or Hirshsprungs would fit my profile due to the extreme damage that my colon had. Just hope we can get it figured out and get me on some meds.

Pooing is still going great though. And I am still off Pain pills and that has definetly helped me go more. Have not had to take Miralax in the past week. So at least that has been working. Hopefully I can stay off the drugs with this new joint pain.

Glad you are doing so well Jen and Hodaya. Thats awesom!!
Well, going to head to bed, love you all
Posted 7/16/2010 10:22 AM (GMT 0)
Hi Ladies,

Just a quick hello as I'm getting ready to go with hubby for his procedure.

Val, I have had the GoLytely. and I aslo did the one your doing. I hated drinking all the disgusting GoLytely.. just awful stuff.. and the HalfLytely was so much less to swallow.. but it didn't clean me out. This time I have a "2 day" prep - which I'll start 3 days before. So surgery is on Monday, so Wednesday and Thursday, I'll eat light foods, on Friday, I'll start the 2 day prep... which is a liquid diet (milkshakes, coffee, soda, etc) and on Sunday - it is strictly CLEAR liquids. I have to do 2 bottles of Magnesium Citrate.. yuck.

Marisa, hope they can figure out what is going on and that you can stay off the pain med's. So glad to hear you're poo'ing good!

Any more on Lizzie?

My appointment went fine.. he said I don't have a hernia, but something weird has happened.. he was honest and just didin't have an answer. (I posted photo's here with the weird budges) any way, he said he wasn't concerned from a medical view point, that it appeared to be muscles. So, otherwise in regards to my surgery, it is really "unknown" exactly what he'll do. He said "Ideally, Ideally... if all goes the way I'm hoping, I'll go in and be able to find the detached graph and reattach it.. Ideally" The ideally's didn't sound very reassuring, and I questioned him more, and he said he may have to go in via an open incision and fix things. he also plans on doing another rectocele repair - posterior and anterior. Bladder is alway a problem, and I'll most likely come home for 2 weeks with a catheter.

Gotta head to the hospital now!
Posted 7/16/2010 3:17 PM (GMT 0)

Hi Aliie,Thanks for Lizzie update.  GLAD she is now with a team that is WITH her.  She, and I think the rest of us, need to know that so she and the rest of us can have hope for her.  When she finally does get straightened out, as I now believe it WILL happen, she has GOT to write a book!  Maybe we can collaborate.

Thanks for the compliment about my transit time 3 hours mouth to ileostomy bag.  The whole thing with me was I had perfect transit time even with my colon (24 hour transit mouth to anus) before the 2006 disaster surgery was done that lead me to need a permanent ileo.  Makes my case all the sadder as I was totally healthy.  BUT at least I don't have motility issue with this ileo.  Thanks for your gift of perspective.  I wish you well with your motility complication.

Jenise,  I'm on the Ocean Princess.  Small older ship.  Nice, but not the social scene of the Queen Mary 2 which we will be returning from England on.  That QM2 Cunard is the best of the best with Cunard Queen Vic right behind or actually a bit nicer as it is smaller yet has all the dancing.

The radiology error in my original 2006 surgery is FINALLY being looked at.  Even if I finally win my suit, I have got to find a vehicle for getting those 2 original surgeons out of the OR.  With me being their 10th suit and God knows how many more patients in search of legal help; I feel a calling to protect others.  Even with well intentioned surgeons as the rest of you have and the ileo surgeon who saved my life and did the best that could be done for me, I really do think we possess the full scope of knowledge that there is.  We are the experts.  What each of us is dealing with seems to be the full realm.

Peltz my heart goes out to you.  You have my prayers.

Hodaya and Tracy, best continued recovery wishes.  Things will slow down, I promise.

Tracy, compared to what you have gone through you can lick this smoking thing; I KNOW you CAN DO IT!

Anchors Aweigh, Rosemary

Posted 7/16/2010 5:27 PM (GMT 0)

Hi Ladies!

 

In the spirit of all of this bowel prep talk that has been going on, I have some humor to toss in the mix. We all despise the preps, and the only good bowel prep is no bowel prep at all! It's Friday, so if you don't have plans, get a hold of (Blockbuster, Video on Demand, etc.) the movie "Ghost Town" with Ricky Gervais and Tea Leoni. Ricky Gervais plays a self-centered dentist who goes in for a colonoscopy, has an issue with the anesthesia, and well...you'll see! Hilarious movie, also very sweet, and I guarantee you will all get a kick out of the prep part! Enjoy!

 

For another laugh, if you haven't read Dave Barry's column "A Journey into My Colon -- and Yours," you need to! NOW! It was originally published in February 2008 in the Miami Herald, and it is the most side-splitting description of a bowel prep and colonoscopy I have ever seen. http://www.miamiherald.com/2009/02/11/v-fullstory/427603/dave-barry-a-journey-into-my-colon.html

 

*Disclaimer: If you are a fresh post-op and still have a sore abdomen that hurts when you laugh or cough, you will want to hold off on these.

__________________________________________________________________________________________________________________

 

Lizzie loves being closer to home. Having her husband, family, and friends nearby is such a relief for her. She is exhausted, though. Thankfully, because she is being better taken care of, she can relax and just rest. Pain and inadequate nutrition contribute so much to fatigue, but they are doing a better job at controlling her pain, and the nutrition team is consulting- a PICC and TPN are probably (hopefully!) in the near future. Keep praying!

 

Sarah - I am so sorry the immunoglobulin therapy is only causing you more discomfort. What side effects are you having? Did your MRI show anything? I pray you can find an endocrinologist with the curiosity needed to figure you out! Food related question for you: what do you eat/drink for protein?

 

Do you have any hypotheses as to what causes your joint and nerve pain, yet all ANA panels are normal? I have no idea! My rheumatologist is excellent, and he puzzled over my case for a long time and just couldn't find anything.

 

I agree with your thoughts on the rectum acting as an obstruction. The physical therapist has not been able to do any internal measurements or work on my rectum because it is impossible at this point. She said my resting tone is so high that it exerts and inhibitory effect over all small bowel motility. She works under a pelvic floor physician (apparently there are only five doctors in the US that specialize in pelvic floor problems), and because I'm such a mess, I will have to see this physician pretty soon.

 

Rosemary - thanks for your wishes on my motility problems...I guess we'll see what happens! It breaks my heart that human error, and not genuine pathology, is responsible for your struggles.

 

Love and prayers to you all! Happy weekend!

 

Allie

Posted 7/16/2010 5:54 PM (GMT 0)

Hi Allie,

Thanks.  The human error element breaks my heart too.  Seems all so unreal.  Traffic accidents happen, illness and pathology all too saddly happen, but mine was not only error, but surgeons actually seeing I did not have the redundant sigmoid and removing it anyway.  Seems like my story transcends even error of mis-read of original defecogram.  Then all the unconsented procedures done that I did not need.  Bladder lift though no bladder symptoms and no bladder prolapse.  Vaginal vault reconstruction though vaginal vault had no descent.  That is why I think one of the most high profile atty's in the U.S took my case.  I think he views it as a slam dunk winner.  BUT as a former surgeon himself, he said that too bad winning can't undo what was done.  But I think I will prevail and make some headway in getting these 2 surgeons to stop doing this type of combination over-done surgery as I am their 10th case.  Past patterns all the same.  If the state Board won't deal with it in the end, there is always the media.  Would hate to go that route, but I am determined to save others from going down the road I did.  I asked my atty if we will ever find out what caused the intermittent incomplete rectal emptying issues and he said no because muscle and nerve tests were not done that should have been.  Could have been some nerve disruption from my previous hysterectomy done in 1995, which by today's standards is a totally unnecessary surgery for small fibroids such as I had.  Seems like I got trapped in Americam Medicine's "Treatment Trap."  I'm sure I'm not alone.

Tomorrow St. Anthony, New Foundland, then a sea day, then 2 stops in Greenland.  Smooth seas so far, but we are buffered by land so far. Give Lizzie all my best.  Being cared for and feeling cared for will take her a long way.  Will give her the emotional support she so desperately needs and deserves.  Rosemary

Posted 7/17/2010 9:43 AM (GMT 0)
Hi Ladies

Please can I join you? Earlier this week I was diagnosed with Colonic Inerita and the Functional Obstructive Disorder Anismus. I've already had a Colonoscopy, Evacuation Proctogram and Colon Transit test. They are repeating the latter next week as we need confirmation before going ahead with any surgery. I can't take the bowel prep solutions, so had to have a manual evactuation done the day before the colonoscopy, which was streets worse than the test itself. Glad that one doesn't need redoing! The surgeon has expained that a Total Colectomy is the only option, yet he's reluctant to go ahead at present as I have several other health problems. So, I'll be seeing a colleague of his who is a physician Gastroenterologist on Wednesday and having the Transit scan on the Thursday. They will then have a meeting and we'll go from there. I've had Chronic Constipation for years, but things have got worse as a result of Severe M.E and then about 6 months ago I started with what I now know is Anismus. I just want it sorted even it means taking the risks of yet another operation, as the symptoms are getting worse and more painful. Thankfully the surgeon understands M.E and knows it is a physical not psychological illness and how it affects a patient's muscles and nerves.
Posted 7/17/2010 2:40 PM (GMT 0)
Hi ladies...
Been a while since posting and i have to thank my sweet friend Allie for keeping my journey updated. I am back closer to home after having a nervous breakdown and wanting to just throw in the towel, but Allie would not let me and talked to me all day and night until i fell asleep. She has been an absolute blessing as well as Judy, Rosemary (emails), Tracy for her daily check ins, and marisa and janie for texting!!!! All of you i have forgotten and those of you skways checking my status on hete and thank you for yourvprayers. I could not dovthis without all of you
My surgery is scheduled for august 23....i am not happy as i am in so much pain and cannot eat without getting so distended i am sob!!! And this puts more pressure on my stoma which is all swollen and leaking yellow mucous. Being close to home has been wonderful and i feel safe finally. Cleveland was a nightmare!!! It would take to long to explain, but i never want to go back, but i have to.
Well this is exhausting to type on my phone. All of you with upcoming surgeries are in my prayers and Hodaya i am sooooo happy you are doing so well!!!! I have tried to get a hold of you, but had no luck :(
Love to you all
Lizzie
Posted 7/17/2010 5:05 PM (GMT 0)
cookie, hi. I also have colonic inertia and obstructive defecation syndrome....I had several tests and was diagnosed with anismus, intussusecption, and a rectocele. This has made my life a living hell, not so much the colonic inertia because I could control it pretty good with miralax, but the obstructive defecation syndrome. I spent 3 to 6 hours everyday on the toilet....UGH I finally had surgery on June 21, 2010. The doctor did a subtotal colectomy, rectopexy, and fecal diversion, which means I now have a "bag", an ileostomy. I feel so much better this way.

My doctor said I was not a good candidate for a total colectomy with ileorectal anastomosis because of the outlet disorder, mainly the anismus. I had to disimpact 100% of all bowel movements for the past 5 years, no matter the consistency of the stool. Even water would not come out without me inserting my finger into the rectum to release the water. Sorry for TMI! So, my doctor said I would still be in the same boat after the total colectomy with my bathroom acrobats and having to disimpact. EWWWW Not fun!

So, when you had the defogram, could you poop out the barium paste? Did you have an EMG, pudendal nerve studies, anal manomtery tests?

Wow, how did they do the manual evacuation before your colonoscopy? And I am not familiar with M.E.

Lizzie, so glad you are close to home. Why is the stoma putting out yellow pus? Is it pouchitis? Are you on antibiotics?

Tracy
Posted 7/17/2010 11:29 PM (GMT 0)
Lizzie,

Glad you are closer to home and feeling safe now, but why on earth is Cleveland making you wait until Aug. 23rd?  ANd Can you wait that long?  Glad Allie kept you going and that the rest of us are here for you in various ways.

cookie,

Welcome!  What is M.E. I don't know what it is.

Seas are ROUGH tonight off the coast of New Foundland.  Our shore trip was good though. 

Rosemary

Posted 7/18/2010 3:31 AM (GMT 0)
Welcome cookie. M.E. is tough. I have FMS so I understand what you are dealing with. So glad that you have a doctor who understands your condition. Why can't you take the bowel preps and how do they do manual evaculation? I have colonic inertia and am scheduled for a sub total colectomy on July 28th.

Lizzie - It is good to see you posting here. Allie must seem like your guardian angel. She has done a wonderful job of keeping us updated. God bless you both.

Val
Posted 7/18/2010 9:50 AM (GMT 0)

Thanks for all your welcomes. :-)  

 

M.E is also know as Chronic Fatigue Syndrome.  There are a variety of symptoms and it overlaps a lot with Fibromyalgia.  It's still very misunderstood, especially here in the UK.  confused Too many people still believe it is 'all in the mind', even though there is loads of evidence to prove them wrong and the World Health Organisation say it's a real Neurological illness and is not psychological.  mad Unfortunately, my immune system was damged by neurosurgery, they didn't know it was a risk at the time of my op, and after several viruses I started with M.E in 2004.  The worst symptoms for me have been chronic pain, extreme fatigue, lack of mobility and goodness knows how many allergies.  I was bedbound for about 4 years and have been housebound for 6.  Whilst this health problem is definitely improving, I'm in the process of relearning to walk and have even managed to start some voluntary work roughly 6 hours per week, the bowel symptoms have got progressively worse.  This is how I know that they are not 100% linked to the M.E  I can go 6 weeks without a BM!  I think I started with Anismus roughly 8 months ago, so it explains why bouts of feacal impation have become more frequent.  I'm sure I've had Colonic Inerita since I was a teenager as BMs have never been straight forward.  Had to eat loads of fruit, bran and drink goodness knows how many bottles of prune juice.  Last year, I tried probiotics and they helped for about 6 months, then just stopped working.

I can't take the bowel preps as it would cause me to miss the medication that I need for epilepsy, as it sends things through the body so fast they wouldn't have the chance to absorb into my blood stream.  I know from previous experience that this would cause a convulsion and I might not get it back under control.  So it's a risk I can't afford to take after having had 6 brain ops to control severe epilepsy.  I need the meds to keep hold of the part the surgeons couldn't remove. 

Manual evacuation was similar to colonic irrigation.  They had to insert a large tube, roughly a metre shocked   and then, over an hour, injected 5 enemas and goodness knows how much water.  The doctor then removed as much of the solution as he could and then I had to sit on the toilet.  We can't understand why hardly any faeces was found even though I had not had a BM for 4 weeks.  

Tracy, did he explain why a total colectomy wasn't a good idea when you have Anismus?  I didn't managed to evecuate any of the Barium paste in the defogram.  I haven't had the EMG, pudendal nerve studies or anal manomtery tests.  Please can you explain what they involve, as he hasn't even mentioned them?  I've been told that a subtotal colectomy won't work and the surgeon will have to remove all of it.  Not sure why at the moment.

Posted 7/18/2010 10:01 PM (GMT 0)
cookie, wow. I can't imagine having brain surgery x6! How are your seizures now?

I had the same problem with the defogram-I pushed and pushed and could not get the barium paste out. Do you manually disimpact? I learned real quick how to do it myself....going to the ER was just too humiliating...UGH

Since you failed the defogram, you need further testing to rule out other issues like hirsprungs, nerve damage, etc.

Have you googled anismus? I have researched anismus until I am blue in the face and am also in anismus groups and I have NEVER talked to another person that has been "cured" of their anismus. Many have taken biofeedback and showed improvement, but the improvements did not last. I have had botox injections directly into the puborectalis muscle and I have spoken to others that have also had botox injections and none of us showed any improvement from that either.

What is so ironic, is they have done studies and they saw anismus in totally NORMAL subjects, that could poop normally, despite the contraction of the puborectalis muscle. Some doctors don't even consider anismus a true diagnoses! Obstructive defecation syndrome is not understood and there is no "one size fits all" surgery to help us.

This is why I chose to have the temporary loop ileostomy to see if I could stand it....because I truly think I may end up with an end ileostomy because my rectum does not work properly to expel feces and I would rather empty a bag than sit on the toilet 3 to 6 hours everyday.

Wow, sorry for rambling....I just feel so angry that there is no CURE for us.....
Posted 7/19/2010 12:12 AM (GMT 0)
Hi Allie,

the MRI of the brain was clear but that is not really conclusive for anything since tumor in the pituitary gland can be too small to be detected by MRI.
Moreover there is the possibility that the cortisol excess is caused by overacting adrenal glands which can be either hyperplastic or host of a tumor, too. I should get a MRI/CT of the adrenal glands but I don't have a doc who is able to order this examinations since most of my docs work in the clinic where they can't transfer patients to radiologists outside their own clinic (and the radiologists in the medical clinic are not good at all and as you know much depends on the examiner and its interpretation of images). My general doc who could transfer me won't do this since he does not believe in the endocrinological issue and does not take me and my symptoms seriously in this regard. He just belives in what the andocrinologist I visited before told him and that was basically that everything is fine...and neglects like the endos erverything other...yeah that was before they said to me in the clinic while I was hospitalized due to the catheter infection that I should get an MRI of the brain because of very strange thyroid panels.

I don't know what causes my nerve/joint pain if it is indeed an underlying autoimmune problem which has not manifested yet in other ways. However I think autonomic dysfunction is common in dysmotility patients even if they don't suffer from an actual auto-immune disorder like SLE, lupus etc. there is an artcle I will send you by mail dealing wit this issue.
Moreover, in my case the joint/nerve pain could have been triggered by thhe excessive use of antibiotics since I have never experienced this kind of pain before my endless antibiosis therapy started, particularly the strong intravenous antibiosis for the septicemia. A. are know to mess your immune system and can cause a-induced peripheral neuropathy which I had and never resolved totally.
Do you experience worse pain when you have bacterial overgrowth which messes the immune system either?

I will have to return to the immune therapy this upcoming week but I am pretty afraid and I don't want to do this any longer either, but I guess I have no choice. I have experienced this time no improvement either but terrible side effects which still last. My nevre pain in my feet is pretty bad and I have very painful swelling of my right foot. I guess it is an inflammatory process may be of the vessels since auto-antibodies are known to cause this. My theory is that my body does not like the given auto-antibodies since it can't use them (which would indicate y underlying problem/CIP is not auto-immune related) so that they circulate in the blood where they can cause symptomy anywhere you have weak places.
I can't get a dosis of cortisone which is sometimes used to reverse the side-effects of immune-therapy since this would aggravate the cortisol excess and so my condition in the endocrinological front.

Honestly I don't think you will have luck with the biofeedback since they could not do the therapy properly due to an incredible high tone of the msucles/spasms. When I tried to insert the scope I was even in more pain. I could not stand this.
However I do hope that you might make a step forward with this guy you will visit.
May be he will see that there is no chance for you except for an ileostomy which would really be the best thing for you (same is true for every other patient with dysmotiliity issues exept for p. wit isolated CI)

Tomorrow, I am going to have an appointment with my GI doc and I hope I can convince him of the severity of the endocrinological issue; may be he can help me to get a MRI/CT if the adrenals etc.

I am so frustrated, I can't express it adequately. Everything I try has no success at all. I am at my wit's end, both with my body/numerous issues and especially with the docs.
Hugs
Sarah
Posted 7/20/2010 10:36 AM (GMT 0)
Lizzie, so glad you're back closer to home, hubby and family.. that will help! Always in my thoughts and prayers.

Hodaya, how you doing sweetie? Check in and let us know all is okay and still going well!

Sarah, gosh.. you've been through so much, hope the appointment yesterday went well.

cookie, welcome! You won't find a better group of support!

Allie, thanks for the movie suggestions.. I may look into them while I recover!

All this talk about of pelvic floor dysfunctions.. from what I read, there are things that help, but not a cure. During my exam with the surgeon, he did another rectal exam and asked me to squeeze, it didn't feel like I could. Also, I don't really feel his fingers in there nor do I feel the poo! I notice that I often sit to go potty, and than get a slight... very slight feeling I need to go. I still have to strain hard help myself evacuate (pushing on the perineum area) ..I just hate it. As far as this rectocele, it is not so much anterior or posterior, but sideways. Rare, and I assume it is from my childbirth injury. The surgeon said that they don't have a solution for this occurrence, and I wonder if the STARR procedure would help. Anyway, I may need to go back to my col-rectal surgeon if the rectocele is still causing such issues. Anyway.. just went shopping and have some soft foods to eat and planning on starting Friday... Monday is fast approaching!
Posted 7/21/2010 6:34 AM (GMT 0)

Hi Ladies,

 

Lizzie has a new PICC line and TPN going! Huge praise! This will help her so much, and allow her body to heal properly after surgery. The doctors at her home hospital plan on keeping her for awhile, so it's great that her family is so close. She also had an NG tube down for a couple days to relieve the distention. Her pain is being managed so much better than it was at Cleveland, so that is another big praise. She still has quite a bit of pain, though, so keep praying for that. Surgery is still scheduled for August 23, but they are trying to get it moved up to give her the relief she so needs and deserves. Keep those prayers going!

 

Sarah, with all the problems you are suffering, I would hope that your doctors would look under every rock just to see if they can find something. I am so sorry that getting them to take a look at your endocrine system continues to be such a battle. Strange thyroid panels could be indicative that something else is off. I also hope that your doctors will see fit to discontinue the immune therapy if it continues to give you more problems. Do you know how many more rounds they want to do?

 

Thank you for sending that article! I look forward to reading it in the morning. I have not been able to pinpoint any event that makes my joint pain worse. It doesn't seem to be related to any bacterial overgrowth. I don't have the joint pain all the time, it comes and goes, but it is still very painful. At this point, I have no idea, and my rheumatologist doesn't either. He really checked everything possible, and I just don't have any autoimmune processes going on.

 

I agree with you on biofeedback. Thankfully, I didn't have a session this week, and I am so glad! The spasms it creates hardly make it worth going! How on earth my pelvic floor is such a mess, I will never know. Any idea what causes pelvic floor dysfunctions?

 

How did your appointment with your GI doctor go? Did he have any suggestions or ideas? Was he able to order any scans or additional tests? No giving up!!! Someone will find the answers for you! Whenever you need to vent, no one here minds one bit, or shoot me an e-mail. Hugs to you!

 

cookie, welcome! I hope you find great support here! And as you will see...we're not shy about discussing anything.

 

Have a great night, everyone! Love and prayers to you all!

 

Allie

Posted 7/21/2010 11:21 AM (GMT 0)
Hello! New girl here. I'm 22 and I'm having my large intestine removed on Tuesday, having a temporary pouch for three months or so, then having another op to have it reversed. I haven't really been wanting to think about it but this forum seems really friendly and helpful, so I thought it'd be good to read about other people's experience, especially since I'm getting nervous about going into hospital now. I hate hospitals. I haven't had a thing wrong with me before this year, but in January I was bleeding and went to A and E, turned out I had polyps, and eventually discovered that two of about eight of them had a few cancer cells, so they're getting rid of my large intestine just as a precaution because it's high risk for having the same thing in the future. So, that's my story! Thanks for reading. :)
Posted 7/21/2010 11:23 AM (GMT 0)

Thanks again for your welcomes :-)

Tracy - As yet, I haven't learnt how to manually disimpact, so I'd really appreciate any advice on how you cope.  I'm seeing the Gastroenterologist physician this evening, and have got quite a few questions that I need answering  confused Will ask about the nerve tests.  Thanks.  My epilepsy is now under control, but I did have a relapse last year following a treatment that I was told would be safe, but unfortunately that wasn't the case.  It's because of this that I'm at higher risk of something triggering my seizures so have to be super cautious.  I don't blame the Neurologist, as doctors aren't God, so can't always make the right decision.  Even though some of them think they can!  smilewinkgrin I've got the repeat Colon Transit scan tomorrow.  Can't see it being any dfferent to the last, but can always hope.

Posted 7/21/2010 5:01 PM (GMT 0)
snugglesaurus
  Hey, well I had out-let issues, turned down bio-feed back, and went straight to surgery.  Because I knew with all the pressure in my intestines and colon and rectum, that once I had my Total Colectomy the out-let issue would be resolved.  And it is, I no longer feel the tightness and pressure in my rectum because all of it is gone except for like a inch where they sewed my sm intestine to what was left of my rectum.  So that is my thought on that plus bio-feedback is expensive...good luck to you.

Leslie

Posted 7/21/2010 5:06 PM (GMT 0)
HalfLytely is nasty and I had to mix it with all kinds of stuff to be able to drink it. Moviprep was much better and I was actually able to stomach it. Just had to chase it with water.
Posted 7/21/2010 6:23 PM (GMT 0)
Hey Leslie,

My insurance is covering the biofeedback. I don't even have to pay a copay each visit unless they messed up last week. I go back for my second appointment tomorrow. I do pay for the hospital parking though. So ridiculous! At least I get a "coupon."

She had to zap me on the first visit which she said she hasn't done in years. I was like, "big surpise!" It was interesting to watch how my muscles are constantly squeezing in my rectum (around 20 if that means anything to anyone). There was barely a blip up or down on the screen when I tried to bare down without using my abdominal muscles.

I'm not interested in a pouch unless its temporary. I have five more sessions so I hope this helps even just a little bit. I've changed the way I do try to have a bowel movement. I try my "exercises" first and then go about my enemas/etc. I only bare down - not teeth clenching baring down. If it comes out, good. If not, I'll try another enema or go about my business.

I take a capful of Miralax everyday which keeps my stool from being hard as a rock, but it definitely is not mushy. It gives me a lot of gas which the bottle says it does not.

Both colorectal surgeons want me to try biofeedback first. I'm willing to give it a try. If this doesn't work out I'll harrass them some more. Being on more of a schedule about when I try to go helps. Either first thing in the morning or when I get home from work. If I don't then I get a lot of pain. It doesn't always work, but I seem to get less nauseous.

I know my colon is slow - other organs are fine. I know I have an outlet problem and it is between my rectum and descending colon (around my coccyx). If my butt can relax for six months with a pouch - that's fine with me.

Thanks for your input.
Posted 7/21/2010 6:48 PM (GMT 0)
snugglesaurus
  Hi, you must have amazing insurance because most wont cover it.  I really hope that this helps you and I am happy to hear about the ins. coverage for you.  If I would have had the coverage I may have tried it, but really I was just hopeless at that point and wanted to get rid of the problem that was making me so ill.

I had a bit of a problem on my vacation, spet a lot of time in the hospital for some reason my intestines went to sleep, and had ilius, so had a NG Tube most of the time I was in the hospital.  I believe that being in a airplane is what caused everything to go out of wack.  Because when I got back home everything worked, and 5 days later I got Paracarditis and ended up in ICU and they said I probably got it on the plane.

So today I am starting to feel better, because that paracarditis feels just like a heart attack,,,,OMG  don't want to ever feel that again.

But I feel like things are moving in a great direction now and just hope it continues...

I will pray for you and for all the others suffering, its just crappy ya know.  You don't realize how much feeling well really means till you have been so sick for so long.....OH to be young and healty again..

Leslie

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