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TOTAL COLECTOMY PART 30

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Posted 12/29/2009 6:50 PM (GMT 0)
Jenise - Miralax is osmotic and it pulls water into your gut.  You may find that you are urinating less because a lot of your fluids are being absorbed into your stools. 

I hope you all had a great Christmas celebration with your families.

Take care,

Amey

Posted 12/29/2009 8:18 PM (GMT 0)

I will glady show you pictures...it happened again at work and was sick for 30 min in bathroom.Ugghhh...but I do not know how to post them. They are on my phone. I can either email them to you if you give me your email or sendthem to your phone. Sorry would write more...at work.

Love you all.

Lizzie

Posted 12/29/2009 10:28 PM (GMT 0)

Quick Update:

Jen was admitted today for dehydration/weightloss....thats all I know. She texted me when I was at work. She needs our prayers and hope they will keep her PICC in this time or a central line and give her the nutrition she needs. I know her surgeon handed her off his service back to her GI doc.

Lizzie

Posted 12/30/2009 12:22 AM (GMT 0)
Lizzy - Thank you for the update on Jen. Poor Jen.

Jenise - I emailed you photos of Lizzy's email. She sent them to me last night. You will be astonished!
Posted 12/30/2009 12:54 AM (GMT 0)
Poor Jen! I just can't imagine more time in the hospital! Prayers are going her way...

Amey, thank you so much for sending the pictures - I emailed you back. The decrease in urine and such.. I never realized that the MiraLax could have that effect, but it does make sense. I know I sure like getting up less during the night, and that alone is worth taking MiraLax!

Lizzie, om our dear Lizzie! I have always been worried about you, but even more so now. Your belly is beyond what I had imagined! You MUST bring these photo's with you as well. It is so clear to see that you are a tiny little thing with no meat on your bones, and than.. you have this belly that is blown up and definitely lopsided! I'm truely wooried about you and relieved that you are going to the doctors tomorrow. How can an emergency room even send you home!?

Tracy, I'm checking back in hoping that you may have posted how your visit with the doctor went today. I hope it was a good appointment!
Posted 12/30/2009 12:57 AM (GMT 0)
Hi Lizzie,

Do you have your questions written down for tomorrow? good luck. Thanks for the update on Jen. Rosemary
Posted 12/30/2009 3:23 AM (GMT 0)
Oh poor Jen! I hope she gets well soon.

Lizzie, I hope your appt goes well tomorrow. Write all your questions down so you don't forget anything. My email is [email protected] Send me the picture of your belly.

My appt went well today. The doctor was compassoinate and listened well and responded well. I asked him to prescribe nitroglycerin, but he said nitroglycerin has too many side effects and causes a horrific headache...so he prescribed a topical ointment that is like nitroglycerin, but without all the side effects. He doesn't think it will help, but said he had no problem with me giving it a shot. I don't know what it is  called though because I had to take it and leave it at a compounding pharmacy. I should get it tomorrow. It is supposed to relax the anal spincter muscle, but "may" help with the puborectalis muscle.

He also said I have to try biofeedback for 5 sessions.....he said if it doesn't help after 5 sessions that it will never work. So, if it doesn't help, then he would recommend a temporary loop ileostomy. He also said anismus is very hard to cure and even if biofeedback helped, that it would likely be temporary and that the anismus would likely rear its ugly head again. This goes along with what I have read on the internet too.

I asked him about colonic inertia and the total colectomy. He said he would never recommend for me to get a total colectomy because I have such a terrible case of pelvic floor dysfunction.  He said the pelvic floor dysfunction has to be much much better before he would even recommend that. I told him I would really like to keep my colon. I also told him the outlet problem got so out of control after my hysterectomy and he said "something went wrong in that surgery". He thinks nerve damage.

He told me to try and learn how to splint through the vagina. I am unsure how to do this. Do any of ya'll? He said it would be easier to go through the vagina because I need to get past the "blockage" that the puborectalis causes???? And this would be easier through the vagina instead of the rectum as I have been doing. I looked up how to splint and didn't get anywhere. LOL

So, I am going to try the biofeedback...and if it doesn't work, then I will have the ileostomy sometime in June. because I am off work all summer.

 

Posted 12/30/2009 3:30 AM (GMT 0)
oh my gosh...... poor Jen, maybe now they will give her the picc line she so needs to help her gain weight. she's in my prayers. thanks for the update Lizzie. are you seeing dr Nadav tomorrow or is it CC? anyway good luck honey! could you or Amey send me too the pic of your belly to [email protected]? i'd really like to see what's going on with you. everyone's reaction is making me more worried about you!
Posted 12/30/2009 3:53 AM (GMT 0)
Tracy, i missed your post... i'm so glad!! sounds like this dr is really after your best interest and wants to help you. sounds like he really understands what's going on with you. gosh, this is so sad about the anismus, isn't it..? it makes me so terribly sad that there's no cure for that, as so many of us are suffering with it. i mean, for heaven's sake!!!! if only that silly muscle could just relax, we could have benefit SO MUCH from the TC.... i'm so disheartened from this issue! at this point, i think you really have no other choice and i'm 100% positive the loop ileostomy can give you a much much better quality of life. i wish you never had that hysterectomy that caused all of the damage to your pelvic.. oh honey, i really wish you finally find relief and able to FINALLY live your life and NOT live on the toilet!! hello everyone else.. wish i had more time to catch up on the other posts, but gotta go to work.. oh... Rosemary, when are you leaving for your cruise? if you see this, then i hope you enjoy it and have the best time!!
Posted 12/30/2009 3:54 AM (GMT 0)
Tracy,

So glad the appointment went well.

Lizzie, my email is [email protected]

Send me the belly picture too. we are all so worried. Rosemary
Posted 12/30/2009 12:52 PM (GMT 0)
TDR, your doctor is correct. Using nitroglycerin on your bottem is pure torture. I tried it for 3 days and couldn't stand it anymore. Within seconds of using it, I was on the bed and couldn't move. I've never had migraines, but using nitroglycerin had to be even worse. Botox injections were not any fun either, but I'd take them any day over using nitroglycerin.

Lizzie, will you send me your photos, too? I am praying for you and you are in my thoughts always. My New Year's wish is that someone can help you. Also, I'm praying that you can see Dr. Wexner. Even if you can't see him, Rosemary was correct. You can fax him a letter and he will respond. More advice, you can send all of your records to him at Cleveland Clinic and I believe for $300 they will go through all of your records and give you their thoughts and how to help your condition. I think that it would be well worth it for you. Please consider giving it a try. It might change your life around, and for that reason alone, you owe yourself to try. Dr. Wexner is the best and I don't think that he'd disappoint you.

Rosemary, have a super time on your cruise. I will miss reading your posts, but go out and have the time of your life. I love cruises and think that I could live the life of luxury on them and never get tired of it..

Hodaya, how are you doing? Are your issues post-colectomy getting any better or are you still feeling frustrated. I know that it's difficult, but please think positive thoughts. I understand how easy it is to fall into depression from all of our trials, but you are a wonderful person and you will find a happy medium. For me, it's an ileostomy, but I think that God has been making me ready for it. I know that it would have torn me apart a few years ago.

I'm seeing a counselor and he is wonderful. He reads so much about things encountered with my condition, that I think that he knows more than me sometimes and I am so grateful to have him as a counselor and a friend. Yesterday, we talked about using imagery for me to think about my small intestine and imagine it flowing how it should and not inflamed and in knots.

Butterfly
Posted 12/30/2009 12:55 PM (GMT 0)
Oops, Lizzie, I forgot to tell you my e-mail address. It's:
[email protected]
Posted 12/30/2009 1:05 PM (GMT 0)
What do each of you do to not think about your constipation, so that you can relax? I try listening to music or reading, but sometimes I get so frustrated by my condition, that I can't do either well.

butterfly
---------------------------------------------------
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10
Posted 12/30/2009 1:23 PM (GMT 0)
Lizzie, with your permission, I can post the photo's here so you don't have to figure out sending them via email. Please know I'm praying extra, extra hard for you today... you need help, and you need help now!

Tracy, oh my gosh - I'm excited and doing a happy dance for you!! It sounds like this doctor really sounds like he is going to work with you and treat you!!!! Everything you wrote, sounds like he is right on track with what you should be doing. The splinting.. I'm an expert at it with all my prolapses and rectocele.. you just need to insert 1 or 2 fingers into your vagina, and push on the back wall towards the rectum. If the stool is in the rectum, you'll feel it (a bulge - at least I do). I totally understand you wanting to keep your colon, and really - with nerve damage in the rectum, removing it isn't going to help.

Butterfly, so glad you have a compassionate counselor that is helping you.

Rosemary, what ship will you be on? It sounds so incredible, and I hope your friend doesn't back out on you!

Jen, thinking of you again.. wishing and praying all the best for you.

Judy, hope everything went well with your surgery too. Please check back with us as soon as you can. Miss you so much.

Hodaya, what are your plans from here on out? Are you going to see another doctor? I know it must be disheartening to still have issues after surgery. I really don't think my pelvic floor issues are to do with relaxing.. but more of not having the full feelings within the rectum. Maybe it is from the years of having a rectocele and having stool stuck in there.. I just don't think I feel things in the rectum the way a normal person does.

So, I reduced my Miralax down to 2 doses, and I'm scared things are getting more difficult! I feel a bit more rectal pressure and yesterday I felt I had to strain a bit more just to get a little out. It is now thicker than toothpaste, but in no way hard. Even though I reduced the doses, I still went about 4 times yesterday. However, I think I'll go back to 3 doses.. with the afternoon as a half dose instead of a full.

I think my other question got a little lost, and Jen is in the hospital so, I'm hoping Janie (who doesn't have any rectal issue) will read and see:

JANIE - question.. how does it feel prior to you having a BM. Is it a feeling of fullness or somewhat pressure in your rectum? Right now I can almost 'hear" when a BM is coming.. I hear gurgling, and then I feel a slight pressure or fullness in the lowest part of the rectum (almost like I might pass gas) and than I know it's time to go. It strange and different then what it was like before.. but maybe it is 100% normal...?
Posted 12/30/2009 2:15 PM (GMT 0)
Jenise, yes you can post the pictures. I did not know how or I would have myself. I am at work at cannot type much, but Jen is getting fluids and the are discussing PICC and TPN this am. The doctors are going to put their heads together to try and get her some help. She needs all are prayers. I will update more later....

LOVE YOU ALL.

Lizzie

Posted 12/30/2009 2:57 PM (GMT 0)
Here are the photo's our our poor Lizzie!



Posted 12/30/2009 4:45 PM (GMT 0)
Oh you poor thing Lizzie! That is not normal...the doctor told me when you have a slow stomach and small intestine that your stomach will bloat very badly. My stomach gets bloated lust like that, but mine is from being unable to expel gas and feces. It does not occur when I eat like yours does. And you have a double whammy...a bloated belly from eating and then being unable to expel feces. I know you are absolutely miserable. I sure hope the doctor today has some options as to what you can do. Did you bloat like that when you had your ileostomy? Does vomiting relief some of the bloat or do you have to have a bm to relieve the bloating?

Jenise, I could never get the hang of splinting. I will practice though to see if it can help me. But ewww, another disgusting practice to take a crap. LOL HAHAHA

Butterfly, I am glad my doctor didn't put me through the torture then with the nitroglycerin...OUCH The compounding pharmacy did call back this morning and he said he can make the prescription. It will be $45.00. I will pick it up later and tell ya'll what it is called. Hey, maybe it will help.
Posted 12/30/2009 5:20 PM (GMT 0)
LIZZIE,

Thanks for emailing me your pics. Then I saw them on here, the one from the side is unreal! This looks like a late pregnancy. Let us know after your appointment today.. Someone mentioned sending $300 and all your tests and these pics to Steve Wexner for review. That is an excellent idea. You may also want to send duplicate tests and pics and another $300 simultaneously to some other experts for review. That way if Dr. Wexner can't get a handle on this maybe one of your other reviewers could. I did docs one at a time and should have done multiple docs simultaneously. I finally ended up doing this with medmal atty's but by then I could eat and could therefore think better and coordinate all the record ordering stuff.

Let me know if you would like to send your records to Lahey Clinic colorectal dept. I have made hefty donations since my life saving procedure and I have an "in" with the donation dept who says if you ever need anything just call. I would get service there whether I donated or not, of course, but now I may have some leverage to at least get your records reviewed by the colorectal dept team. They would look at your stuff together and pool their ideas. None of them hold themself up as GOD they all work together. I could even pay your $300 review fee for you. One picture is worth 1000 words.

I leave Jan. 7 so let me know and I'll arrange. [email protected] my tel is 413-773-7686. Give me a call if you want. You are going to die if someone doesn't do something. You are so young and so beautiful.. It is not your time to go. We will, as a group, see to it that this does not happen.

Rosemary
Posted 12/30/2009 5:24 PM (GMT 0)
Lizzie, I forget...where do you live? Is it Michigan?

Glad Jen's docs are putting their heads together.

My friend is going on the cruise with me; she just freaked out with packing, xmas, company over staying at her house, trying to pack, the usual stress stuff. It's Regent Seven Seas Mariner. Jan 7 - March 17 around S. America. Sure hoping I stay well.

Tracy, your doc IS the right one. Who would know that cream would give you a migraine. Oh, Lord! So happy for you girl, you are on your way to a better life. I will personally coach you through all the external applicance stuff. It's not that hard.

Rosemary
Posted 12/30/2009 9:11 PM (GMT 0)

quick update:

just back from my surgeon here. I ate to show him and as I was driving there I had to call my mom as I thought I was going to pass out and my pulse was over 130. I got to the office and they had me lay down, but never took vitals. I felt so dizzy and weak. My surgeon examined my belly and said it was "unfortunate" and did a rectal exam to make sure I was not impacted and he said I was not. He set me up to have a gastrograffin enema to check my small bowel to rectum anastamosis and my bowel to bowel anastamosis for stricture next Wednesday. He said he feels an ileostomy is in the future, but he wants my results from the smart pill and gastro enema first before anything is done and in the meantime to go to the ER if I feel dehydrated or have too much pain. I was shocked he did not admit today the way I was feeling when I was there and again the appearance of my abdomen. I asked him if he though my belly appearance was "ok" and he said its not ideal at all, but we have to have the other test results back. I will not hear from FL until after Jan 4 about the BCIR, but my surgeon is a little concerned that due to the many many complications I have had thus far I may have them with that surgery since it is not as simple as the ileostomy (well nothing is simple). My rectum is so constricted these last few days I am having a hrd time passing even liquid.

To answer the question if I get relief after vomiting....yes, but I feel awful and feel so depleted. I was hoping to just even have a night in the hospital with pain meds, fluids, and nausea meds, but for some reason no one seems to want to do anything right now. I know I am dehydrated and I know I am depleted. I just thre up the lunch I ate and it was all undigested for the most part from 1230 this afternoon and this was at 330p. So for now I just wait until my tests are back and I hear from FL and have my connections checked. My surgeon is very compassionate...very, I just do not think he realizes how awful I feel even though i told him over and over and explained how I do not feel I can sustain the way I have been going. I am going to lay down...just feel exhausted.

Lizzie

Posted 12/30/2009 10:30 PM (GMT 0)
Lizzie, I am having the gastrograffin enema on 2/16. It is one of the tests that Dr. Wexner required I do. My stomach looks like yours, too, only lumpier. I have more scars. I really think that it's a bad idea for you to have the BCIR surgery, because of all of the problems that you've had. You're like me. We just haven't had an easy time of it. I believe that you need to consider an ileostomy again, this time having a surgeon that will make you a decent stoma. I've been told over and over that ileostomates do not have problems with constipation. I think that you need to take the time out from your schedule and really think about what you've gone through and where you want to go. Again, I think that Dr. Wexner could be an excellent resource and/or surgeon for you. Please think about it. Your health is so important and I know that your family has got to be worried about you.

butterfly
---------------------------------------------------
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10
Posted 12/30/2009 11:01 PM (GMT 0)
Lizzie, I've been waiting for your update, and very surprised they never admitted you. I feel so sad for you.. being 29 (my daughters age) and having to struggle the way you are! I am worried about you, as I know others here are as well. I agree with Butterfly, maybe it is time to think about going back to having a ileostomy. The key is having the stoma made correctly - so you don't suffer the same issues. Are you actually located in FL? I know I have heard nothing but good things about Dr. Wexner, but I also think that Tampa has a couple of really top notch surgeons.

Tracy, so where do you go from here? Did your doctor give you places to start the 5 sessions of bio-feedback?
Posted 12/30/2009 11:05 PM (GMT 0)
Hi Lizzie,

Thanks for posting. I am surprised you were not admitted too. BUT at least your local surgeon is going to check for strictures with the gastrograffin next Wed. Today being only Wed, that is a long time. So you have 2 anastomoses: one small bowel to rectum, and the other ? Was part of your small bowel removed giving you a small bowel to small bowel anastomosis too? That is 2 places that could stricture, WHEW! I'm betting the stricture is the upper anastomosis.

Once you get your answers and a plan is made tell them at work that you will die if you don't have something done. They will get it; you work at a hospital right? Trust me if you don't take care of you, nobody else is going to; I speak from experience.

Just my opinion, I would stay very well away from the BCIR and just have a "simple" ileostomy with a stoma made correctly. If done correctly it is a piece of cake compared to what you've been through. Also be sure whoever does it, likely Dr. Wexner, knows how to avoid the "ileostomy twist." It is an internal complication that can happen with ileostomies. My surgeon at Lahey wrote the book on how to avoid the twist. (So I'm sure assuming I don't get one, at least not from the way he did it anyway. Of course, as we all know, anything can happen.)

Thanks for the update. If you want contact info at Lahey in Massachusetts let me know. Assuming I stay OK I leave Jan. 7 but you will have your gastrograffin answers by next wed. Jan. 6, so still time. That camera pill was done a long while back, they still have no results? Good luck in the meantime, I am really surprised he didn't admit you and get those gastrograffin enema xrays done as an inpatient; it only takes about 30 minutes; it's nothing you should have to wait a week for. Anyway, good luck, Rosemary
Posted 12/30/2009 11:24 PM (GMT 0)
Hi Lizzie,

I just figured out where your upper anastomosis came from. I forgot you had the ileostomy take down, so your upper anastomosis is where the end of your ileum was reconnected with the rest of your small intestine after the stoma was taken down. I answered my own question. Rosemary
Posted 12/31/2009 2:13 AM (GMT 0)
Little update:

Talked to Jen earlier, they are not doing TPN right now becuase they think its too quick of a fix and she will crash again after she is discharged. They are trying meds and doing some testing....she has not eaten yeat and still feeling sick.

As for me, I have felt worse and worse as the night goes on. I have wanted to go to the hospital all night. I feel so weak and no matter what I drink it doesnt help. I had to take laxatives again...was able to eat some saltines and a few candies. I just cannot do this. I am in tears. So much pain, nausea, and weakness....

Lizzie

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