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TOTAL COLECTOMY PART 30

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Posted 1/6/2010 8:56 PM (GMT 0)
Ah, I see, Peltz.

Good. You are the one with most of the knowledge of all this more advanced, hard to diagnose SMA syndrome, etc. A proximal obstruction would be easier to get diagnosis as it would show on the gastrograffin enema xray or on a cat scan.

I personally hope mine is just a mild case of gastroparesis. Thanks for clarifying. Hope Lizzies is something obvious and easy to fix on her image tests. Rosemary

Jenise, interesting info about docs and lawyers and their impressions on you in terms of dealing with you and your husband at your business. This would have likely done ME some good back in 2006 to see some of those 3 "wrong diagnosis docs" in another situation....without their white coats and out of their offices with all those diplomas. Good point. Rosemary
Posted 1/6/2010 9:00 PM (GMT 0)
Hi all...meant to post earlier but fell asleep after my two appointments. I had my annual and in two years have lost 42 pounds!!!!! (before my TC I had gained from my colon not working ever even though i ate nothing) I was 100 still today, but super distended at the time and with all clothes on. My obgyn said from the girly persective everything is ok, but she could not even palpate my abdomen without mw whincing in pain. I have taken 2 percocet already today and had only gatorade and a few baked lays and so distended. I went o my gastrograffin enema and gave them as much ino as I could...the test was so painful for me. Both rectum wise and when my belly filled with the contrast so they could get up to my connection at my old ileo I was almost puking from the pian and nausea. They said the test will not be dictated until friday, but that both of my connections were open with no strictures....as expected by my surgeon. My mom is so upset with how i feel again and how i look she called my surgeons office today and demanded talking to his nurse. She left a message. I should describe the pain for you peltz...when i just have pain its stabbing pain in my right lower belly, but this new pain feels like burning and ripping and its more in the middle and goes upward. I have not been able to get even gas out very well for two days...I have to push on my belly and push and strain and finally a little will come out. They drained the contrast from me today and then I was able to get rid of a little of it with straining.

Jen did go to the ER...I just heard from her...I am sure her hgb is low and she may need a transfusion. She was waiting in waiting room...they need to take her back and care for her. I am worried for her.

Rosemary- Thanks for the links. I will have to check them out and see what they had to say about these women. I am curious about the SMA, but my friend that has it we seem to have different symptoms in a sense, but at the same time I also have a paralyzed rectum and she is ok throughout the rest of her intestional tract. I am curious as to what that brain is ticking about over there!! I always keep a very professional tone with doctors and working with them daily I know they are not Gods, my only frustration with them now is that someone needs to just make a decision....if its an ileo that so be it. I am ready to feel better.

Peltz- I hope I answered your question about the pain difference....and when I do eat, the pain and distension almost feels as if its pressing on something that triggers my nausea and the rapid heart beat. Its all hard to explain.

I was only able to talk to radiologist today and he is going to call my surgeon. I am a but nervous for my mom to call my surgeons office as she is a hot tempered Italian and I am her baby...I am sure you nothers understand. We will see if they call back.

Lizzie

Posted 1/6/2010 10:01 PM (GMT 0)
Thanks for the update Lizzie. That gastrograffin enema must have been real painful for you; glad they sucked out the contrast for you. So at least no strictures at the joinings. But that could throw this in to something functional rather than structural. Harder to DX but check out the articles and print them out. Sometimes a hot blooded Italian mother might be a help in a situation like this.
Poor Jen. Glad she went to the ER. They gotta deal with her.

I took omega 3 fish oil today and it is soooo gassy. WOn't be taking any of that on the trip with me. Good luck everyone, Rosemary
Posted 1/6/2010 11:36 PM (GMT 0)
As far as I know Mayo Clinic is the best place to go when it comes to motilitiy diseases and diagnostic work-up.
Lizzie, do you vomit undigested food? Vomiting undigested food is a sign of gastroparesis since food hasn't left the stomach. Partially digested/predigested food is rather a sign of a proximal small bowel obstrcution when the first part of the small bowel has already begun to digest the food before throwing up.
Posted 1/6/2010 11:52 PM (GMT 0)
"and when I do eat, the pain and distension almost feels as if its pressing on something that triggers my nausea and the rapid heart beat"
this sounds like gastroparesis. Though I have marked gastroparesis too I don't suffer from pain with my gastroparesis but from nausea and early satiety. But there are many peope with gastraoparesis who do experience pain.
However they mostly feel this pain right under the rib cage. Do you think the apin after eating fit this description?
Is the pain after eating different from the pain that just comes without eating?
SMA syndrome as well as gastroparesis and proximal obstrcutions mostly cause pain you feel in the upper/mid abdomen where your small bowel is located.
However keep in mind that your anatomy has changed after colectomy and that the small bowel descends since there is no colon any more to hold it in place.

Normally, pain in the lower abdomen (under the belly button?) would indicate that your problem is rather in distal small bowel. But you are not normal since you have lost the normal anatomy.
If tyou have a distal obstruction then it could be caused by the paralyzed rectum acting as a obstruction.
And it could be two different things: vomiting caused by gastroparesis, SMA syndrome or proximal obstruction AND the other pain by distal obstrcution subsequently to the rectal obstrcution.
The only thing that can be excluded in my point of viwe is a mechanic obstrcution (like it would be with adhesions, malrotation and kink in your small bowel since this would clearly show up on the x-rays, gastrograffin enema etc)
Posted 1/7/2010 12:00 AM (GMT 0)
Rosemary,

I had all of the required tests, including the gastric emptying test. I completely failed the sitz marker, (119 of 120 markers remained throughout the colon), defecography showed "relatively good emptying; minimal decreased emptying distally". The Manometry showed "diminished resting and squeeze pressures, rectal sensation normal". My EMG wasn't good and showed "significant pelvic floor dysfunction". I also had the gastric emptying test, which I failed, but when given erythramysn (sp) response time was excellent. My surgeon said that there was always the chance I'd have trouble going after surgery, but because the defecogram was pretty good, he didn't think it would be an issue. I tried biofeedback before surgery, but because the stool never reached the rectum, it wasn't successful at all. I've tried since surgery also, and also had another defecogram and anal mamometry. The defecogram was much worse than before surgery, and I haven't been back to see the surgeon for the results of the mamometry. I have an appt. later this month.

Today I haven't had the rectal pressure, but I haven't felt well all day. I've had sort of a racing heart, and just feel jittery. I've gone to the bathroom a few times, small amounts, but haven't eaten much. I think I need a good night's sleep because I didn't sleep well last night.

Anyway, enough about me.....have a terrific time on your cruise. I hope you're able to eat and enjoy the food, that's always been my favorite part of a cruise...in fact we went on a cruise last
February, the month before my surgery.

Jen, I agree...with your history you probably should go to the hospital. Please let us know how you're doing.

Lizzie,
You're so sweet. I love you too, and I just want you to come on here one day soon and post how wonderful you feel! You certainly deserve it, sweetie!

Janie
Posted 1/7/2010 12:02 AM (GMT 0)
Lizzie

I have some links where you can read about the symptoms of gastroparesis and other motility disorders from patient's perspective
http://www.inspire.com/groups/agmd-gi-motility/topics/
http://health.groups.yahoo.com/group/gastroparesis/messages/180576?viscount=-30&l=1
Posted 1/7/2010 12:34 AM (GMT 0)
Janie,

Sounds like you sure had plenty of tests. Hope things improve for you and you get some info from your appt.

Lizzie, All I can say is Good Luck. If CC doesn't come through, follow those steps I posted for you to get reviewed at Lahey. Between everyone, someone has got to come up with an idea for you. Maybe docs could even pool their knowledge, work together for your benefit. (That is my dream for the medical world to come together, each contribute an idea, collaborate, etc.)

Best wishes to everyone else too.

To bed early tonight, on a train for 25 hours tomorrow and next night, then in hotel 2 days, then onto ship.. Am praying I stay OK. I chased that fish oil I took for my joints out with grape juice, so now am really hungry. No more fish oil for me. WAY too gassy. Will check in in a few days from the ship's internet cafe. I really have to watch what I eat, but so far can eat, so that was the goal.

Anchors aweigh,

Rosemary
Posted 1/7/2010 1:27 AM (GMT 0)
All, I am really having some problems today.  My ileostomy (velcroed leg bag attached to my small intestine) is working, but I'm cramping terrible.  My bag is on my left side, and my right side of my abdomen is extremely swollen and looks like I have a small football in it and it is hard and extended. 

Ususally, I have only cramped when my tube is obstructed, but it's not obstructed today.  I took 2 pain pills and my husband has helped me flush my tube, but it hasn't worked and I'm still cramping very bad; enough that I've been in bed since 11:30 this morning when I got home from work.  How long and how bad should I go before calling my doctor?  I wanted to call him this afternoon, but my husband said to wait overnight and give it some time. 

My question is, do you all cramp extremely bad, too?  I haven't ever had it this bad before and am very nervous.

butterfly

Posted 1/7/2010 2:35 AM (GMT 0)
Lori,
I would definitely call my doctor, or at least talk to the Dr. on call. They will advise you whether to wait to see the dr. tomorrow or go to the ER. I don't know anything about ileostomies, but if it's working well and you're still cramping, maybe something else is going on? Have you eaten anything different today that might have caused a change?

Call the on call Dr. to ease your mind.

Hugs,
Janie
Posted 1/7/2010 2:48 AM (GMT 0)
Jenise,
I must have missed your post earlier. To answer your question, after surgery for at least the first 2 1/2 months, I rarely had to strain. It just came out pretty naturally. Because I was going so often, after about 2 months I added a small (less than a teaspoon) of metamucil at night and it was wonderful....for about 3 or 4 weeks, I had normal formed bms about 4 times a day. Life was wonderful and I felt surgery was a complete success.....but then around month 4, I started having trouble going. I stopped the metamucil as it seemed to stop me up more, and started prune or grape juice. Both worked, but grape juice killed my butt (sore) and prune juice made me run all night long. Then I started miralax, and it was great for about 6 or 7 weeks, and now it's not doing as well, although today wasn't bad. I think it's my fault partly. I just can't eat alot. If I eat a normal meal, chances are I'll pay for it. I also cannot eat chips or junk food, which has always been my weakness. It's great for the weight; I initially lost 13 pounds, and I've managed to keep about 10 off. I had been trying to lose that last 10 pounds for years, but this wasn't exactly how I imagined doing it!!

By the way, does anyone notice a difference in bm's if they exercise? At first I was walking every day and going great, then it got so hot here in Florida that I stopped....I have a treadmill, but yuck, that's no fun. Anyway, my resolution was to start walking again, and hopefully the exercise will help.

Anyway, not to be longwinded, but that's my story:) Glad you're going well, it sure feels great to poop, doesn't it???

Hugs,
Janie
Posted 1/7/2010 3:58 AM (GMT 0)
Lizzie and Jen, how are you? Been thinking of you both all day. I just had to take my little boy to the doctor cuz he severily burnt his hand on the stove. Poor kid!! The nurse wrapped it in pink tape and he was so mad. He said, oh come on, the kids are goin laugh at me tomorrow if I wear that to school! It was so funny. Thank goodness they found some blue. I have a feeling its going to be a long painful road with that one!!

Went to doc yesterday. Got more pain pills, antispasmatic drug for my cramps, and phenergan. He says that I am doing very well for six months out. Even though I only eat cereal bars and activia. I bet I dont crack 500 calories a day. I know, that is terrrible. But I hate the way eating makes me feel. I probably just have an eating disorder like all of you!!

Well, its been a long day, goin to bed. Love you all
Posted 1/7/2010 4:40 AM (GMT 0)
Quick update:

Jen went to ER and had bad experience and felt they "shunned" her as they seem to do to me. She was dehydrated and painful and they gave her 2L NS and dilaudid and sent her home. Her Hgb is up to 9.9 which is still low (norm 12-13) and that in itself can make you feel weak and tired and still symptomatic. everyones body reacts differently. Praying she can get to feeling better....

I have now been distended since yesterday at lunch. I have had no relief and after two huge dose of MOM and even tried Miralax again I have had no relief. I am in much more pain than normal. I have had to take three percocet today and have only had about 500-600 cal i would think including fluid. I have had one serving baked lays, sugar free jello, gatorade, and two ice cream bars. I took MOM over 4 hours ago and cannot even strain to get anything out. I emailed my surgeon and updated him as they never returned my moms phone call. I do not want to work tomorrow as I feel so bad, but I have no choice right now. I cannot call in as we have a sick nurse already.

Lori- I would call your doctor right away, any abnormal distension is not normal....I hope you have called or call in the morning. I think yo uneed to be assessed. I hope you can get in tomorrow or go to the ER to make sure something else is not going on with your teisted intestines you have already.

Peltz- My pain is middle to upper abdomen, this new burning ripping pain....they have tried me on reglan before when I was in the hospital and it did not do anything for me so I am not sure if its an upper psudoobstruction or SMA or if its severe gastroparesis. I have not puked in two days except I keep having puke come up in my mouth since last night all day. When I do puke it is either semi-digester or undigested...it can be both depending on the time. I always have the lower abdominal pain and I am sure that is from my paralyzed rectum. They had to tape down the tube into my rectum today during the test and it was so painful as my rectum did not want to keep it in there. I am giving all of these doctors until early next week before I start moving on to Lahey or Dr. Wexner in FL. At this rate I am not sure how long my body is going to hold out as I have declined in two days significantly. I am also having horrible right sided back pain tonight and the pain meds are not touching the pain, just making me sleepy and I am sure decreasing my motility more.

Anyways it takes me hours to fall asleep so I will try now.

Lizzie

Posted 1/7/2010 1:42 PM (GMT 0)
Hey all,

Google "Mom of nine". .....I think a story will come up that was in Boston Herald where Baystate Medical Center decided to sterilize a woman who did not consent. All she consented to was implant of temporary IUD and they tied her tubes. No medical necessity. My atty is her atty. Baystate must be stopped. Good luck everyone. Let the Shunning stop. Rosemary
Posted 1/7/2010 7:38 PM (GMT 0)
Lizzie,

I have found the website whcih describes motility examples and has pretty good infos - it is from the american association of motility diseases
http://www.agmd-gimotility.org/ExamplesV.html
Posted 1/8/2010 1:22 AM (GMT 0)

Just heard from Lizzie and she is in the Emergency Room.  They took her back immediately and she is going to be admitted.  Her x-rays did not look normal.  She is in unbelievable pain and they have given her 3 doses of dilaudid and it is not helping.

Please keep her in your prayers.  Hopefully now that she is being admitted someone will help her.  She has been suffering so much lately.

Jen 

Posted 1/8/2010 1:30 AM (GMT 0)
Jen,
Thanks so much for the update. That poor girl has been through so much. Hopefully they'll keep her until they find out exactly what is going on.

How are you feeling?
Posted 1/8/2010 1:48 AM (GMT 0)
Lizzie, sending prayers your way. Hang in there and keep fighting the good fight. I hope you get good doctors that can help you get well. Please let us know as soon as you are able. Tracy
Posted 1/8/2010 4:55 AM (GMT 0)

  Hi Everyone,  I don't post often but I read your posts daily.  I had a sub-total colectomy in April '09 so this site is a good resource for me.  My surgery helped with some of my symptoms but created new ones.  Today I feel good though and I am thankful for that!

Of course I don't know any of you and I am one of the newest ones on this site.  I am praying for both Lizzie and Jen daily.  I think, by what I have read that you, Jen, are doing better.  I worry so much about Lizzie; I feel like I know her.  I have gone thru years and years of pain and severe constipation and my stomach used to bloat up huge like Lizzies!  I started seeing doctors when I was 20 years old, and finally, now at age 57 I am getting some relief.  I know that doctors are becoming more educated on "colonic inertia" and motility issues.  Hang on Lizzie, they will find an answer to your problems!  It sounds like you have a supportive husband and a proactive Mom; I am so glad for you.  My husband has had his times when he just "doesn't want to hear" about my problems anymore.  I try to understand that being in his position is difficult also; he so wants to make things better!  Luckily, finally after all these years I am having an equal # of bad and good days.  This is progress for me!  Your day will come too Lizzie (and Jen)!


Love,

Gilda

Posted 1/8/2010 5:13 AM (GMT 0)
Quick Update:

My husband brought up my laptop to the hospital. Today has been quite the day. As I wrote all week long I just have felt awful and honestly could have come to the ER everynight and how I made it through work, especially today...I do not know. God must have been carrying me. I started to make errors today at work because of pure exhaustion and lack of nutrition. As I said my mom had called my surgeons office yesterday, but they would not talk to her d/t HIPPA and I never signed anything. Little to my knowledge she had a bad feeling all day about me, called my husband at work crying, and both of them said they were refusing that I not get admitted. Little did they know it had now bwwn 48 hrs almos and I had taken 3 large doses of MOM and nothing. My belly was huge and so painful and the nurses at work said I must go to the ER, that something was really wrong. I had a few bites of soup for lunch and just could not eat. I got talked to about my little errors and my manager said "I was not like myself at all" and so I made the decision to go to my director and basically tell her i knew something was wrong, i was getting worse, and I could not work anymore. My FMLA is up so after many tears I took a indefinate leave of abscence for now with no length of time attached to it. She said they would love me back and will try anything to get me in when I am well whether it be 3, 6, 9 mo. whatever it takes. I then knew I had to go to the ER so I left work in tears, got to my car and it was dead!!! I had left the lights on. I had to wait 25 min in the freezing cold for security and it was below 0 with the windchill. It took me 30 min after getting jumped to drive a mere 7-8 miles to the ER and when I got here my BP was 152/87 (norm for me 90/60) and my pule was 116 (normal 68ish for me). I was in so much pain...they walked me right back and the doctor was in within 5 min. I got fluids and 5 mg dilaudid and 2 doses zofran. I had a series of xrays and there was a significant difference from New years day. I had varying fluid air levels, dilated loops, full of air, and presenting with an obstruction somewhere. I have this new ripping/burning pain in my upper mid abdomen. I am on clears, but not tolerating barely water tonight. My surgeon was actually in house doing an operation and came to see me in the ER. He said we have to call CC for results of smart pill tomorrow and make some big decisions. I am scared, in pain, and miserable. I am also going to call FL as my case was supposed to be presented today. He said I have done enough bouncing back and forth and said we cant drag our feet anymore. I am here for now and not sure how long. I am really nauseated right now so going to go....love you all and thanks for your prayers. Not such a quick update.

Lizzie

Posted 1/8/2010 5:45 AM (GMT 0)
Hi Lizzie,
It sounds like your doctor are really taking you seriously now and know that they have to find a way to help you! I am glad for that. I definitely know feeling "scared and miserable!" I have had so many times in my life when I was in tremendous pain, felt so terribly sick and didn't know how I could stand another minute! I think that maybe some of my problems have finally been resolved and most days I now feel pretty good. I just want you to know that it can and will happen for you also; just hold on and keep the faith! I am so glad that you took a leave of absence from your job. I had to do the same thing and for quite a while I felt guilty for doing that! Don't, for a minute, regret your decision. You have a right to be healthy, to feel well! You need to just rest and try not to worry about things. I don't know why God took so long to help me, but he finally heard my prayers. You will get better, I really believe it!

GILDA
Posted 1/8/2010 10:30 AM (GMT 0)
Oh Lizzie, finally they are going to help and fix you. How do they get rid of the obstruction now? I will be praying for you. Tracy
Posted 1/8/2010 1:35 PM (GMT 0)
Lizzie, what great news to hear that they finally admitted you!! It's encouraging that they finally see something different on your x-rays, and I hope that they will all be able to figure things out to help you. You just can't go on living like this! Hopefully you or your hubby can keep updating us.

Rosemary, I know your on the train now.. have a great trip!

Amey, thinking of you today.. hope all is still okay with FIL. I know you must be so exhausted.. sending prayers your way.

Hi Gilda, glad you dropped in to say hello, and glad that surgery has helped some! As I said before, I don't think any of us will ever be 'normal' but if we can get improvement - I think that alone is worth it.

Janie, gosh - it does scare me things are going to stop.. and I'm afraid that the MiraLax will eventually stop. I felt it stopped working before surgery - taking 1 dose a day.. now I'm on 3, and doing fine with it. I have tried 2 times to reduce the dose.. but find that I slow down - enough to worry me, so I end up taking 3 doses again. Exercise does help!! I noticed that before surgery and after. I have just increased my walking on the treadmill and while I'm walking -I often have to up off and go! Glad I have the treadmill, otherwise an outside walk would be a bit scary!! I've been thinking about your issues.. did you have a difficult birth? I've been looking out "pelvic floor descent" and it sheds a lot of light on my issues.. rectoceles, prolapses, descent - all give women constipation and trouble emptying their bowels. You can fix one - but still have other issues.. so symptoms are still there. I've had a lot of surgery, and I'm hopeful that this has helped long term (so far - so good). I can at least get the stool to the rectum.. which I couldn't do well prior to surgery, and I am not having to use any enemas or suppositories - which I have used for 21 years!!!

Jen, thanks for letting us know about Lizzie! I know when something is happening to one of us here - we all worry! Hope you're doing better each day...

Tracy, have you started your bio-feedback yet?

Marisa, have you lost a lot of weight? I can say for sure - surgery has not changed my ability to eat. I had hoped it would, but I guess I'll be forever on Weight Watchers - always fighting the gain.

Hodaya, how are things going for you? Hope you were able to get the supplements from your sister.

Judy, thinking of you as well today. Know that school started back on Monday, but hope you're feeling okay with your stent surgery.

butterfly, how are you doing today? Did you end up going to the hospital to get things checked out?
Posted 1/8/2010 2:42 PM (GMT 0)
Lizzie I am so glad they are finally going to do something for you. It makes me so mad that they waited so long and now you are in really bad shape. It shouldn't have to come to that to get help. I am praying for you and thinking of you all the time.

I am doing better drinking and eating pretty good. I am having some abdominal cramps with watery diahrrea but thinking that is just from actually eating and drinking like I am supposed to. I have gained two pounds so that is good.

Well better run my son has been up all night vommiting, I guess its a stomach bug. That is one thing I know I can't get. I think a stomach flu would make all of us without a colon end up in the emergency room dehydrated pretty quick.

Jen
Posted 1/8/2010 3:13 PM (GMT 0)
Jenise,

I only had one child, but he was a big one...10 lbs. 3 oz.  They had to use forceps and he had very large shoulders.  I have no doubt that is part of my problem, every doctor has said that.  My GYN says that is why she always does c-sections now for any baby over 8 pounds.  Of course 29 years ago, who knew??

The miralax doesn't work nearly as well for me, but if I drink  just a little of a Coolata from Dunkin Donuts, it just blasts everything out of me.  I can't for the life of me figure out what's in it, but it's the only thing that works that well.  The miralax makes me go just a little, but I still need to do an enema at least once a day, except in the morning when I drink my Coolata.    Sometimes I buy 2 or 3 of them and freeze them so I always have one in the morning.  On the few days I haven't had one, I feel lousy all day.

Lizzie,

Hang in there honey.  Sounds like something really will get done this time.  We all love you.

Everyone else, have a great Friday!!  Back to work.............

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