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TOTAL COLECTOMY PART 30

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Posted 12/31/2009 3:07 AM (GMT 0)
LIZIE,

GO TO THE ER AND GO NOW. Tell them that your surgeon today told you to go there for fluids and pain meds. You will be acting on his orders. Get someone to go with you. Tell the ER doc to write a note to your surgeon you saw today that you cannot wait until next Wednesday to have the gastrografin enema to check for strictures. Tell them exactly how long it has been since you've been able to eat a meal (has it been since October if I'm correct?). Tell them you just can't go on being unable to eat, gain nutrients, or pass waste. Keep your statements simple and short. By looking at you they cannot deny something is wrong.

Good luck. Rosemary
Posted 12/31/2009 4:23 AM (GMT 0)
Well, I was just writing and poof, it vanished. Crap.

I've missed so much in a couple of days! First, Lizzie sweetie, I'm so so sorry you're having such a difficult time. Your abdomen is way too large and the doctors have to know this. Please do what Rosemary suggests if you haven't already and get to the ER. I can't imagine how much you hate going there and constantly having to ask for help. I really hope you can get to Dr. Wexler and let him help you. He sounds like an amazing doctor.

Jenise, to answer your question....sometimes when I have to go my rectum will start itching. Sometimes I just get a little urge, and sometimes I sit down to pee and I'll end up pooping without realizing I needed to. You said you go about 4 times a day....with me, if I take miralax in the morning and then drink my coolata, I'll go 2 or 3 times quite a bit, but it's very liquidy. If I eat during the day either I'll go a couple more times, or I'll start getting the rectal pressure. It's not unusual for me to do a warm water enema in the afternoon, and that seems to help alot, even if only a little comes out. Then I have dinner and drink more miralax, and I may go another 3 or 4 times before I go to bed. I am so much better than before miralax, but I still have rectal pressure, but an enema helps quickly.

Things are far from perfect, but so much better than before. I've learned that if I go out for the evening and want to eat, I do an enema before I go, and then take a lomotil or immodium and it will keep me from having to go, or from getting the rectal pressure for a few hours.

I feel that if I could ever learn to relax to let the poop come out, I'd be so much better. It takes me several trips to "empty" out, and then I'm still not completely empty. The last time I went for an exam, I took 2 enemas and felt completely empty, but my doctor said I had quite of bit of stool in my rectum. I'll find out next month is he's going to try to STARR procedure. I want to have it if there is any chance it will help, but I feel like the biggest problem is just that I can't get it out.

Gotta run, still have a house full of family but wanted to check in to say hi.

I've missed you all and will catch up soon.

Janie
Posted 12/31/2009 3:09 PM (GMT 0)
hey all, so much is going on... Jen, praying for you honey! Tracy, you crack me up, you're so funny!! i just love reading your posts, they always make me smile, esp when you said you never thought your biggiest dream would be to just poop!!! LOL but you're not alone.... it's everyone's on here biggest dream!!!! you asked if im having another surgery, well i'm not having any surgery any time soon    and hopefully never ever again, unless i have to. the last one was not too horrible, but was no fun either. about my pooping, as long as i stick to the soft-liquid diet, i'm doing o.k, but if i eat a small bowl of rice, small ptatoe, something with wheat in it, fresh fruits or vegies, dairy, grains, nuts, any kind of beans, mmmm... what else..? well anyway, if i eat just a little of those things, then i'd get totally constipated, bloated and miserable with LOTS of pain. the pain gets so intense i can't even sleep at night and it would last for at least a day. what your dr said about needing immodiun after surgery, huh!! it's very unlikely with us gals with CI, just the opposite, most of us (and i do mean MOST of us) still need LAXATIVES, even after taking our whole colon out!!!!! anoying!!!     i actually WISH i were in a condition that i need immodium, diarreah is much easier treated and controlled than constipation, all drs say so too. your belly sounds like a watermellon is called a hyperthympanic abdomen - extremely full of air. for ppl with CI the colon doesn't even move the gass through, so lots of gass gets caught throughout the entire colon causing a hypethympanic abd. mine was like that too prior to surgery, now it's not and it feels so much better. yep, with all the issues i still have, i do feel better now than before. you're right, the pelvic MRI is quite new and it's not done in all hospitals. Jenise, i'm waiting for my sister to send me all the vits and supplements from San Diago. well she just went on a vacation in San Francisco for a few days, then she'll order it for me. it'll take maybe a month till i get it.. but what can i do..? anyway, i also don't feel it when i have stool in the rectum, only when it's massive enough, but even then, i have hard time pushing it out, so for me the sensation also damaged, but also the functioning is not good. Lori, thank you for your kind words, honey! as i described above, i'm not doing that great, i have hard time keeping the diet and lately i have a lot of pain, the kind that won't let you sleep at night, but it happens only when i eat things i shouldn't. i think it's great you found such a good counsler you connect with. i'm working on my depression and i think it's getting better, only i feel i can't move on with my life, like meeting a guy and get married. it's like i'm just used to being alone and it's hard for me to shake this way of living off of me, esp when my bowels are still giving me such a hard time. i can SO relate to what you said about  not being able to do things well, ever since this whole constipation thing started, which was when i was 20 yrs old (i'm now 36), it seems i'm not able to concentrate on things like reading, studding. i just CANNOT concentrate at all, i can't listen to what i read or hear.. my mind is "full of crap" LOL. that's all i can think of.  Lizzie, your abd is big! mine also looks like that after i eat, it always has ever since i was a kid. my girlfriends were always tissing me that i looked pregnant. even now after the colectomy, if i eat before i go out and go on a bus, ppl stand up and give me their sits     oh well... but lately i have so much pain, that i think it's time to go to the dr, i just hate the thought i still need the dr.. i'm waiting to hear about your tests results, hope you're holding on honey! Judy, how did the surgery go??? miss you a lot and hope everything went well and you're o.k. Janie, i'm so glad you're still doing o.k. well it doesn't sound terrific.... but i'm glad it's at least better than before. i hope you keep doing good. Rosemary, your trip sounds awesome!! i didn't go to work today, i had a tooth implant.. yuck! the influence of the anesthetizia stuff is starting to fade and i'm starting to feel the pain.... ouch!!!! i also have to take antibiotics for a WHOLE WEEK!!!! to prevent infection. i'm so worried it'll make me even MORE constipated, cuz my bowels usually get paralized when i take antibiotics.. uugghh i just wish this week will fly fast.  
Posted 12/31/2009 3:46 PM (GMT 0)

Hey girls-

You are all so sweet and I agree maybe I should have gone to the ER. I fell asleep at 8pm and woke at 6 am just feeling "strage" and weak and heart was racing. I took some potassium and headed to work. I think I have worn myself into the ground working four days in a  row. I have thought about going to the ER tonight and getting refueled and pain under control. I have called my pcp to try and get some more pain meds to help the pain. I also had my cbc/cmp drawn here at work to make sure something is not really off. I told my husband I honestly feel worse that I ever have in these last few weeks. Rosemary I think your right about the meals...its was mid October I believe. I just wanted to tell you all to have a wonderful New Years....I thank you all so much for your support and prmise if things get real bad I will go in.....I will have to. I will check up on everyone else later. Miss and love you all.

Lizzie

Posted 12/31/2009 4:22 PM (GMT 0)
Lizzie,

Watch the racing heart. Electrolyte imbalance can cause cardiac arrythmia. I had a few episodes during my 13 months of being unable to eat. Good Luck, err on the side of going in. They have to deal with you, you are at risk. Did you call Cleveland for sooner appt. I have not heard back from Lahey. I put in a word for you. DID NOT give your identity, just said "A friend of mine......" I was trying to arrange for possible record review for you by mail that I would even pay for for you. If CC does not end up dealing. RJ
Posted 12/31/2009 5:56 PM (GMT 0)
Hi girls~ trying to catch up on everyone. I just dont know what to tell you lizzie. I honestly do not know how you keep going. It just seems like you never get a straight answer as to what is going on and how to fix it. They just keep sending you away. If I was you I would have definetly have gone "postal" on someone by now!! I would just think a doctor would admit you until they can figure out what the heck in going on in your body. If it frustrates me this much I cant imagine what you and your hubby are going through. You will for sure be included in my churches prayer needs this Sunday. We are all here for you!!

Rosemary, your trip sounds great!! I went on a cruise to the Bahamas for 7 days. It was so great. Thats what we all here need to do is go on a cruise together! Then we could all meet each other and have fun in the sun!! Which sounds great right now in the dead of winter.

Hey, have you guys tried drinking that Activia? I drink one everyday and it has been great! It has a ton of nutrients in it and 4g of fiber. If I drink one daily I have no problem going poo. They also sell it as yogurt, but its nasty. So I tried the drink and its not bad at all.

You all are in my thoughts everyday.
Posted 12/31/2009 6:12 PM (GMT 0)
Ah Crud! I was up until 2am this morning reading and then I posted a long post to everyone individually...and my post did not come through! Now I am to exhausted to type everything up again! Please know that I am thinking of each of you and hope you all have a great new year.

Here is a short version of my post...

Jenise - Did your surgeon recommend that you gradually decrease the Miralax?

Lizzy - Hello Mr. ER, I am sending Lizzy to visit you.  Please give her a cure before sending here home.  Sincerely, Amey.

Rosemary - Please attach me to your luggage because I need a cruise vacation.  I am very envious! Cruises are the absolute best way to get some true relaxation! I hope you have a wonderful and restful trip!

Hodaya - Has your dr talked to you about an ileostomy?  Does he think you would benefit?

Tracy - I hope the biofeedback is helpful.  I definitely try this before opting for a surgery that cannot be reversed.

Oh Sheesh, I cannot remember what else I wrote...Darn!

Anyway, for those of you who are following my FIL's cancer, he is still with us - Yippie! I am so glad he lived through Christmas and my daughter's 12th birthday. His stomach is filling with fliud more rapidly.  I have to drain liters off his stomach every morning and night to keep him comfortable.  For the most part, he is doing well. Only his body is weak, his mind is sharp!

I hope you all have a fantastic  New Year's Eve!

Posted 12/31/2009 6:16 PM (GMT 0)
i took 4 pills of antibiotics today and i think it's giving me diarreah... YAY!!
Posted 12/31/2009 6:38 PM (GMT 0)
Marisa, i tried the activia (yogurt), it helped for 2-3 days then it stopped. do you think the drink is more effective? Amey, i havn't seen or spoken to my dr since my last follow through on Sep 23. actually for now i'm doing better as long as i stick to my (very stricked) diet. IF i go for an ileostomy, it won't be untill i've exhausted all possibilities. i should go through some tests first to see if there's something that can be fixed, i would try normalax (the israeli version of miralax) first if i have to, but only when i stop going and nothing else works and i have no choice i would go for a bag. anyway, i do need to set an appt and i've been thinking of doing it for weeks now and havn't yet.... i keep putting it off, which makes no sense, i know, but i just hate it that i still need drs. you take such a good care of your FIL, i'm glad his mind is still sharp, that's definitely a major plus. BTW, i know how it is when you write a whole long post and it disappears.... SO anoying! so here's a tip, before you submit a post just mark the whole post first then press Ctrl C (copy), so that way if it vanishes you can press Ctrl V and it'll be there again, that's how i do it :)
Posted 12/31/2009 6:54 PM (GMT 0)

Lizzie-You poor thing, I feel so badly for you that you continue to suffer and are not getting the help that you need.  I just saw your pictures and am horrified that your dr didn't admit you and help you.  Please go to the ER and get some relief. I love you so much and don't want to see you in so much pain.  I know that someone can help you; I know my drs would NEVER let anything like what is happening to you go on with me.  You need to get to Dr. Wexler or to someone at Lahey asap.; you really need to see someone before things get any worse, you can't continue this way.  Please call someone and don't wait. We are all here to support you but you have to do the hard work to save yourself, please fight the fight and DON'T wait until next week for testing. LOVE and HUGS

Jenise-Bms will be very irregular for the first year; they will be anything from watery, shrimp-like, pea-sized to mushy, stringy, etc.; there will be no normal for about a year.  My rectum always felt full and many times I thought I just had to urinate but would end up having a bm also, I never did have any "accidents" though.  Your stools will be based a lot on what you eat; I still eat a low-residue diet and my surgery was in July of '08.  My surgeon said I could eat anything after eight weeks but my GI said I need to stick with the low-residue diet.  I have strayed from it twice and it caused severe diarrhea so now I stay on the diet, plus I don't want to risk a blockage.  My stools are now formed and I usually have 1-2 formed bms a day.  I do tend to get really constipated if I eat a lot of wheat (breads, pastas, cookies, etc.) I then take 1/2 a dose of miralax and it works within 2-3 hours and things are back to normal.  I had a wheat sensitivity before the surgery that they thought would go away afterwards but hasn't seemed to.  So remember that there is no normal and things will be different, your body will adjust and you will figure out what is normal for you.

Hodaya-So sorry that you are still having difficulties; please stay away from the fresh fruits, veggies, nuts, seeds, etc. they can cause you a lot of problems.  Try to stick with the low residue diet as much as possible.  Miss talking with you, LOVE YOU!!!!

Jen-I hope you get better soon.  I am always praying for you.

Rosemary-Thank you so much for helping everyone on here.  You are a wealth of information and have been so encouraging to all.  I wish you the very best health and happiness on your trip, it sounds absolutely WONDERFUL!!!

An update on my surgery: my dr changed my stent on Mon. & put in a new kind that he has never used, unfortunately it was shorter than expected but he left it in to see what would happen.  The good news: it was the first time in months I didn't have any stones so the stent was doing it's job and the stent didn't get stuck:).  By the time my dr got done with his next surgery I had a lot of back pain so he kept me overnight to do some tests and to see about placing a new stent in.  Well my dr was scheduled for vacation so one of his associates took over; I had one test done & went right to the OR, while there the dr said to stop everything because according to the radiologist (who is nationally known) there is no blockage and the dr didn't know what to do because I wasn't his patient.  I said that I wasn't going to miss school in a week or a month when this tube closed off so the dr said if I was his patient he would place the stent so we went ahead and replaced the stent.  When I woke up he said he was glad he put the stent in because even though the test showed no blockage, my kidney tube had a much better flow once the stent was in place. Now when my dr gets back in town we have to decide what we are going to do which is most likely to keep replacing the stent until next summer then remove the top half of the kidney that isn't working correctly. So I'm back home after 3 days and 2 surgeries and have a little discomfort.  I'm not pleased that I have the same type of stent but if it's changed more frequently maybe it won't bother me as much.


Also, I don't know who was talking about antibiotics but remenber to becareful with them and getting c diff.  make sure you take probiotics while you are taking them.

Tracy, Marisa and all praying for good health and a peaceful new year,

Judy

Posted 12/31/2009 7:51 PM (GMT 0)
LIzzie, I agree - I'd be at the ER - the 2nd one, that seemed more concerned. My belly swells and stuff - but never to this point.. and the lopsidedness - is concerning.

Judy, so glad your home.. and I wish you didn't have to keep going through all these procedures.. it must take a bit of a till on you. Wish your doctor was there so that they had all the information. How long is this stent suppose to last.. hopefully till summer vacation? Thanks for telling me about your BM's.. I guess I sound as things are working better for me. Prior to the surgery - my stool was stuck above the rectum, now it is definitely getting to the rectum - and withOUT using a suppository! That's a big thumbs up! I can't recall when I haven't used my fleet - in order to go. Oh, I also have sat down to urinate - and had a BM as well.. glad to know I sound normal!

Amey, don't ya just hate it when we lose all our typing! I'm so glad your FIL made it through Christmas and your daughters birthday.. although it is hard to know what you look like and think of you having a 12 yr old!! You look much too young! My surgeon told me to stay on 3 doses, and that I could try and reduce it to 2 - but warned me that it must say soft, and for me not to get constipated at all. After reducing for 2 days, I'm back at the 3 day dose - as I can feel the need to go better, and I seem to go more.

Jen, thinking of you again today. ((HUGS)) get better soon, we miss you here so much, and I know your family misses you even more.

Rosemary, you're an angel for reaching out to help Lizzie. Besides that - you're just so helpful with all your knowledge and information. I just adore you too!

Hodaya, after learning the hard way - I too copy my posts - just in case! I'm with you on the lack of sensation in the rectum.. maybe it will return eventually. I have read that it really does take 1 full year to see the total results. I still think you should give the Miralax a try!! It really is great stuff!

Marisa, yippee for the activa drink! That's gotta be much tastier then prune juice and better the MiraLax! I did try the yogurt in the past with no luck... but maybe things would work better for me now.

Janie, thanks so much for replying.. again, where else in the world can I ask how they poo! LOL. There are times I go.. and 5 minutes later I go again, and 5 minutes later again.. but guess that is normal too. AT least I'm going! Do you need to strain/bear down any.. or do you just sit and go? I have a sensation in my rectum, and I do have to beardown in order to go. I'm afraid to strain too hard, which is why I think I sometimes have to keep going after the first time.

Tracy, I never did the vaginal splinting too much either. Because of my descent - it always seemed to work better when I pushed up my descending perineum area. With the surgery just done down there.. it is just so incredible sore to touch! I do still have to take sitz baths just to make it feel better. Although.. the last 2 days I feel am improvement and it is not as swollen as it was.

As far as eating.. last night I ate a salad, and 1/2 baked potato and a small piece of steak. It seemed pretty good stomach wise - no real bad cramps (just little cramps). Hopefully - it doesn't constipate me. But seems promising I can eat normal foods!

Okay, here is my scary thing... I'm scared for my daughter and a little for me! My daughter (29) lives out of town, and her lifestyle is one that saddens me. Anyway, she was sick, has no car or money and wanted a ride to the hospital. Thankfully, I'm not driving yet - and sent my husband to get her. He brought her to the hospital with what she thought was an infected spider bite or ingrown hair on the back of her neck - turns out it is MRSA! She also has a very bad cough - and I read way too much about this superbug.. The hospital drained it, told her she was lucky she came in, as this would have killed her. She is on antibotics now, and resting at her friends house. My husband washed his hands. but never washed his car seat.. so I just hope it doesn't spread. They said anyone who has had surgery within the last year is more at risk for getting this, and I've had 3 surgeries within the last 9 months! Can you please add her to your prayers?
Posted 12/31/2009 8:50 PM (GMT 0)
Thanks everyone. I PRAY I continue to stay well on this cruise as I really need it. A group cruise when we all get "well" would be FUN. Maybe the Oasis of the seas, biggest ship ever! 6,000 passengers. Just floats about in the Caribbean as it's too big to really go anywhere. Interesting concept for a cruise ship.

I leave Jan. 7, Lizzie, so call me if you want me to take action for you at Lahey, otherwise, I'll be away until March 17th. (1-413-773-7686).

Why is it not ocurring to any of these docs you're dealing with that you could die of their neglect and your survivors would have more than substantial grounds for suit! (I'm certainly NOT saying that will happen, but they are seriously setting themselves up legally and setting you up medically.) This case is as bad as mine. But like you said, our bodies must be strong. You are in month #3 and I lasted 13 months. However, I was not trying to work 10 hour days. I'd basically wake up, drink a bit of fluid, obstruct or not, phone and fax new docs for help, then go back to bed.

You need to contact the patient advocacy department at whatever hospital you are dealing with and the advocate at CC. Tell them the situation and send the picture. You will get action I promise. These advocates can smell a potential suit a mile off. I know that is not in your mind, but it certainly would be in theirs. Try it; you have nothing to lose. Praying for you. Rosemary
Posted 12/31/2009 9:45 PM (GMT 0)
Hodaya, I never knew there was a name for my watermelon belly. HEEHEE I learn something new everyday. I feel for you still having issues with pooping. When I talked to Rosemary the other night we both came to the conclusion that the rectum is what is causing the continued constipation since it is a part of the colon. Maybe removing the rectum and getting a j-pouch would solve the problem????????? I also read several studies done by different doctors that say anismus is truly rare and that many normal people have a malfunctioning puborectalis muscle and have no problems with pooping. WHAT? These studies have really made me step back and question what exactly is the reason that I can't poop. I personally think all of us have a rectum problem!!!!!!!!!!!!! What do you think?

Janie, think long and hard about getting a surgery on your rectum.....I understand your desperation, but I think surgery is risky to do more damage to the rectum....Just my opinion. Glad the miralax is working for you though. Miralax is definately my laxative of choice.

I tried activia and my stomach swelled up so huge it looked like I was almost ready to give birth. I have to be very careful of consuming too much fiber. I also can't eat frosted mini wheats due to the same issue, bloating and a horrible burning in the intestines. EWWW

Oh yeah, did I tell ya'll my doctor said I have megarectum??? WHAT? That sounds so nasty. My husband thought it was hilarious considering my rectum is tighter than a drum. LOL He said my rectum doesn't register when it has poop in it until it is ALOT! But, I don't have poop just fall into my rectum on its own EVER! I have to force it to the rectum with my bathroom acrobats.
I think the megarectum probably was caused from my years of being constipated and having rock hard poop!

Judy, you are 1 strong woman. I hope they get your kidney issue straightened out this summer. You will be so much better without those nasty stents. They have to hurt. OUCH

Lizzie, have you tried taking other laxatives to melt the poop that is in your small intestine? Have you tried miralax, mag citrate, golytley???? Because MOM never built up in my system like miralax does. You need to poop alot to get some relief from the awful bloating.

Jenise, can you believe I took my 11 year old daughter to the doctor today with an infected big bite. Turns out it is MRSA!!!!!!! They gave her bactrim antibiotic. This is her 2nd time getting MRSA from an ant bite. I wouldn't be too worried about catching it from her. My son almost died from MRSA 2 years ago because it was in his tendon and the bone of his hand. He is lucky to have 2 hands right now. None of us ever caught it! You just can't touch it because it is not contagious through the air. What did they give your daughter for it?
Posted 12/31/2009 10:04 PM (GMT 0)
Tracy, oh my goodness.. I can't believe that about your daughter! Reading about MRSA.. it's scary!! They also gave her bactrim, plus a $40.00 ointment. Well, at least you made me not worry so much! That's interesting about your Megarectum...although my doctor didn't actually say I have that.. self diagnosing myself a few months ago, I think I might too. Sounds awful, doesn't it? I think that that could be the reason I have a diminished sense of feeling in the rectum. When at the hospital... with the huge impaction, I felt pressure, but I did not actually feel the sense that I needed to have a BM! My rectum had so much stool in it... but thankfully, it is making it pass the area where things got stuck (above the rectum). I can live with taking MiraLax if need be. Yesterday, I felt full.. and decided to take 1 dose of MOM. Before surgery, 1 dose would never, ever do anything for me - nothing at all, but yesterday - bingo! It worked!

Janie, do some research on having surgery done to your rectum. I know my doctor was very against it.. and they did fix my rectocele by securing the back wall of my vagina (never touching the rectum) and doing the perinoplasty too. I'm too sore to see if I feel the rectocele at all.. but I think I'm going to be happy with the results.

Rosemary, oh my.. the Oasis would be a blast! I just love cruising, and know it would be wonderful!
Posted 12/31/2009 10:18 PM (GMT 0)
Tracy,

Good Luck to your daughter with the MRSA; that's scary. From an ant bite?? Auugh!

Judy, Best wishes with the stent issue. I don't know how you're doing all you do.

Janie, If you're doing OK with Miralax, think twice on that surgery. The voice of experience, yet ours are all so different. Rosemary
Posted 1/1/2010 3:31 AM (GMT 0)
Jenise, yes we all freaked out when my son was dx and hosptalized with MRSA. We just knew we were all doomed to catch the dreaded infection. The doctor cut his hand open to let it heal from the inside out. It was nasty! But he had to keep it covered at all times. We just made sure we washed and washed our hands. I also used a bleach water to wipe things down. But I didn't go overboard or anything! But, probably better if you didn't go over to her house since you just had surgery. Just to be safe! :)

Who said they know how to splint? I must be dumb or something because I can't figure out how to do it. GGRRRRR But my female anatomy is very different since I had the sacralcolopopexy. Jenise is yours like this? Different?

Lizzie, did you have anismus before you had your total colectomy?

My stomach is huge and bloated tonight. UGH I am going to figure out how to take a picture and post it on here. It is unreal looking...but not like poor Lizzie's. Mine is perfectly round, just like a 5 to 6 month pregnant woman. But I have lots of extra skin to fill out since I have so many stretch marks from such huge babies. So, that explains why my stomach just gets huge. I need a tummy tuck, but my husband is against it. He said my stomach is like this from having his babies and he loves it. Isn't he sweet? But hey, it would be nice to not have all this hanging skin. It is sooo gross.
Posted 1/1/2010 3:54 AM (GMT 0)
Lizzie,

That's a good question Tracy just raised. Did you have the anismus prior to having the total colectomy. If you did and you were not tested for it, then you too were under-tested. So many docs don't get to test colon transit, pelvic floor function, rectal anatomy, anal sphincter issues. It all has to get tested to see what the issue is or issues are. Tell me about this....I learned all this way too late. But I did see 3 colorectal surgeons (one was a top US surgeon) prior to original unneeded 2006 surgery, and nobody mentioned the full battery of tests to me.

ANyway, good question Tracy.

Hope you're doing OK Lizzie. Cannot wait to see what the gastrograffin enema shows. Gastrograffin will give you the runs afterwards no matter what the problem is so it will clean you out. This will be a good thing. They gotta deal with you; they are responsible.

After we all get the best we can, we gotta write a book or go on a talk show or something. All this is just too unreal.

What about Jen? Is she still dehydrating? Sorry I'm getting a bit lost...did Jen have her whole colon out and her small intestine is not taking over with absorption of water and electrolytes? I hope 2010 is better for all. I hope I continue to stay "OK." This is all so scary and to think it's all about poop. RJ
Posted 1/1/2010 6:09 AM (GMT 0)
Happy New Year!! hoping this year will be a good year for pooping!! I would have to say that is my new years resolution!! LOL!
Posted 1/1/2010 6:13 AM (GMT 0)
Happy New year everyone. Hope it's good for all. Rosemary
Posted 1/1/2010 9:47 AM (GMT 0)
Judy, thanks so much honey, and i love you tons too!! all of you girls just brighten my days :) WOW! it's SO wonderful to hear the stent actually did help to prevent the stones from forming.. but as i understand, it's very uncomfortable and painful to have it in, isn't it? how exactly does it feel to have it in? deos it limit your ability to move around, like sit/stand up/lay down etc.? but at least there are good results, so i guess it was worth it. what's the frequency of changing the stents? i hope and pray it works out the best way possible for you, honey. love you lots and will keep praying for you! Jenise, WOW! i'm so glad your daughter went to the hosp on time.. does MRSA means the swung flue? i'm surprised they didn't addmit her, just to watch her over. get this, my mom had the swung flue 2 1/2 mons ago. she was in the hosp for about a week and i was visiting her and i was then only 2 mons out of surgery!!!! OMG thank goodness i didn't get it myself.... i can't believe your perineum area is still so sore. i thouhgt it would be healed by now. i guess what they did is a more complicated procedure than the STARR. the STARR has no stiches or anything, cause it is done through the anus, like lapafoscopicaly through the anus. i know the STARR wasn't right for you, since you had all kinds of issues in the pelvic, which i guess the STARR can't help with. i hope it heals fast. i'm very glad you feel you can eat whatever you want, and actually you shouldn't have problems eating anything, cause after all, you do still have most of your colon in ther, so it's different for you than us. i'm praying everything keeps working great for you honey, you've been through enough. Tracy, we sure have a rectum prob, and i don't think even the drs have it all figured out about the anismus yet. i honestly dont know Trace, removal of the rectum is sure radical, cause you now, there's no way back after this, we can't put the rectum back, and we're not even sure it'll work. BUT then again, if we reach to a point where the rectum is SO not finctioning and there's NOTHING left to do, but go for a bag, then i guess we then will have nothing to lose and it'll be worth it trying the j pouch. but only then. i guess you're more at a point where it could be an option for you than for me, cause your rectum is much worse than mine, my rectum is still somewhat functioning, so i still have hopes i can still manage. plus, i still need to do a defecogram and other tests and i'm hoping there's maybe a prolapse/rectocele/narrowing of the anastamosis site/a kink in my smalls or some other thing that can be fixed and turn everything around for me and it'll turn out it's not the anismus causing all the probs for me.. only after i have some test, i'll be able to know what should be done with me. can you remind me why is it that your new dr isn't doing you the defecogram? couldn't it help diagnose what's exactly going on in there? a megarectum..??? wow. but you know i also dont feel the stools is there, and do only when it's really massive. i'm not sure what MRSA is, but i'm really glad your kids and you made it through! how's everyone else? hope you all have the best year!! may we all be happily pooping LOL!!
Posted 1/1/2010 2:17 PM (GMT 0)
Lizzie,

I just remembered a VERY EASY QUICK TEST you can just go get done at the 2nd ER you went to that seemed sympathetic.

Just ask them to do an upright and supine (lying down) plain xray. (pee before you do it to get your bladder "out of the way.")

If you have small bowel obstruction or pseudo obstruction the radiologist can easily tell this due to the patterns of fluid and gas in your small intestine. There is a stair case pattern if there is an obstruction and normal distribution of fluid/gas if there is not an obstruction. Piece of cake for the trained radiologist.

If you work at a hosptial, you could even ask any doc for an xray order and have this done on your lunch hour. Just do it before eating and after peeing.

Do this. It's easy. Rosemary
Posted 1/1/2010 2:23 PM (GMT 0)
Happy New Year everyone! May 2010 bring health and happiness and effortless poo'ing to each of you!

Hodaya, MRSA is a staph infection - or what they call a "superbug". Here in the US, antibotics have been over used, causing normal bateria to become resist.. and more powerful. I think my daughter sounded better when I talked to her yesterday. You're right about me being different as far as digesting foods and stuff because I do still have most of my colon. I know for Janie, the MiraLax works almost instantly.. but unfortunately, it doesn't work that fat for me. I just hope it keeps working.. and my gut tells me I actually do have CI, since I've had years and years and years on chronic constipation, and the extremely redundant transverse and sigmoid indicated it as well. With the redundant transverse still in there, I suspect things will still be slower then a normal person. Because of the rectoceles , prolapses and the STARR procedure, it's no doubt that your rectum does have nerve damage. I think a lot of us have it, and that is why we don't have sensations unless extremely full. That said.. I do think mine is also functioning enough that I will avoid any surgery on the rectal area. Yes, my bottom is still sore, swollen, and tender and the stitches are visible - but it is feeling so much better the last few days.

Tracy, it was I who told you how to splint.. as I mentioned, I did occasionally splint through the vagina, but never had that much luck. Curious how is your anatomy different... as far as mine, my vagina just seems more straight up and longer.. where as before, my cervix was right there! The surgery did seem to also seem to pull up my descending perineum, and even though the latest defecograms indicate a large descent, it isn't the 8+ cm it was before. I also think, from what I can tell so far, that this last surgery - the perinoplasty, has added support. Your hubby sounds sweet.. my hubby is like that too, but he is my second marriage. When we married 22 yrs ago, I also had 2 children via c-sections and I gained so much weight with the pregnancies.. I was left with a hanging flap of skin. I hated it, and at age 29, I went, with the support of my than new hubby, and had a tummy tuck. Loved the results!

Lizzie & Jen, hope you both feel better today!
Posted 1/1/2010 3:37 PM (GMT 0)
Hodaya, I am not getting my rectum removed...I was just wondering if the rectum is the problem since several studies showed that many symptom free people pooped normally despite having a paradoxal puborectalis contraction. This was proven through defecogram. In the studies they used half symptom free people and half people with problems like we have. I truly think the medical community has no idea why we can't poop! Because honestly on my defecogram the paradoxal puborectalis contraction did not even show until the very end of the test after I pushed and pushed and pushed?????? So, what is up with that? My angle widened like it was supposed to also. I should of been able to poop in the beginning! Hey, I am just going to question and pick my brain and research since this problem we have is such a quality of life issue. I like the BCIR too. I looked at that and it seems pretty cool. Rosemary what did you say about the internal pouch?
Posted 1/1/2010 3:52 PM (GMT 0)
It just makes me distrustful when the medical community does not agree on what is wrong with us. You can take 100 doctors and 25 will agree on something, 25 will agree on something else, 25 more will agree on something else, and the other 25 will then agree on something else. We are guinea pigs and I don't like it. If this was a man's problem, believe me, they would have found a cure years ago. They still look at women as hysterical and crazy! Hey, we must of been molested because we can't poop!!!!!!!!!!!!!! Okay, just needed to vent!
Posted 1/1/2010 4:18 PM (GMT 0)
Hi Tracy,

The pouch issues I mentioned were stricture going into the pouch and pouchitis (an infection in the pouch). Doens't happen to everyone, but is something that doesn't occur with ileostomy as there is no internal pouch.

I was just going over some last minute things to get to my atty; so when I get back from vacation I won't have to get my mind so back into my case and hopefully just maintain well the way I am. But one thing I noticed. There is a defecogram review from an expert abroad that I had look at my 2006 pre-op defecogram in 2008 for the medical review. He, along with the rest of the reviewers, said I did not have a sigmoidocele but just a temporarily descending loop of smalll intestine that only happened after I pooped out the contrast. Which did not prevent rectal emptying.

Of interest to you with your correct anorectal angles, indicating good function of the puborectalis muscle, but still having "anismus" is this: He is a world reknowned expert pelvic radiologist and he said that anismus is slow, incomplete evacuation of rectal contrast DESPITE having correct angles. Apparently there is a lot more to anismus than a puborectalis muscle that does not let the rectum straighten for defecation. THis was new to me and something I missed in his original letter. As prior to surgery my angles were perfect and I could poop well, though many divided moves, some complete and some incomplete. SO apparently I did have some functional (non-surgical) form of anismus though my angles were fine. Just thought I'd add that to our confusion.

Happy New Year! Rosemary
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