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Total colectomy 2011.2

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Posted 4/10/2011 10:36 PM (GMT 0)
That's good Gimpy. All I know is that surgery made me sooooo much worse. BUT we are all different. BUT do ask him how your special condition would react to scar tissue that naturally forms in any surgery. Rosemary
Posted 4/26/2011 7:15 PM (GMT 0)
Hello, dear friends! Just checkin in on all of you. I have been training for a race that is coming up in September so I have been very busy. So far I can run about four miles without stopping. But, when I do stop my ankles and my knees are just killing. But icing does help. I keep thinking my body will get used to running, but I am not quite sure.

Boat, sound like you are having a not so good time. I hope things are starting to improve. Its so frustrating, cuz you would think things should just fly right through you. But that is not the case. I still take Miralax at least once a day, just to keep things moving.

Snowing again her in the great state of Idaho. It is so depressing, I want spring so bad. So those of you who have it, enjoy.
Posted 4/26/2011 8:47 PM (GMT 0)
yeah i have spring, but also the allergies along with it lol.... been sneezing and having major running nose for 4 weeks. now i'm trying to get over a stomach flu YUCK. lost 6 lbs within 3 days!!! my whole family and me got it - vomiting, real bad nausea and diarrhea (of course, the diarrhea always skips me lol). yeah... spring time is great and is making me sick every year all over again :/ lol but i'm getting better. tho we never have snow here... wish we had some, snow is so beautiful. :))

good for you with the running!! GO Marisa!!!!
Posted 4/28/2011 2:31 AM (GMT 0)
Ok girls, I need your help. I have been having these intermintant, painful cramps today. And my belly looks like it is four months prego. It is also quite firm when I push in on it. Dont know if I need to be concerned about it or what. My abdomen has never swollen like this so it has me concerned a bit. Any thoughts?
Posted 4/29/2011 1:17 AM (GMT 0)
Marisa,
Just saw your post and wondered how you're feeling? I haven't had that issue, but hope you're doing better!!

Hugs,
Janie
Posted 5/20/2011 2:44 AM (GMT 0)
Hello Everyone....

I cant believe this hasnt been updated in quite sometime!!! I miss you guys SO much and need updates on all of you. I have not been on in forever....I wish I could say its because everything has been perfect, but thats not the case. I am still having so many complications :( I am not sure the last update Allie put on here, but I have many things going on I guess. I see a new internal medicine doctor tomorrow since my pcp said I am so far beyond primary care and to get a new point of view. I am still according to my labs malnourished, yet my wt is fine and too high for my liking. This is partially from my feeding tube (i had removed about a month ago) that was bypassing my stomach as the inertia is affecting both. I have probable hypoalbunemia and I am retaining about 10 lbs of fluid from the inablility for my bladder to contract ( results of urodynamics performed by my urology surgeon). I am now on high doses of lasix and potassium to combat hypokalemia and its horrible. My bladder issues are getting very frustrating and I hardly urinate if at all without the lasix. My bladder has to get to the point that is overfilled and empties by gravity. I have to self cath if I cannot pee and I have had 5 sever UTI's in a row. Since the removal of my feeding tube (I was doing fine for over a month) and the feeding tube was incredibly painful. Now I am doing very poorly....large amounts of vomiting again and immediate distention and symptoms of obstruction. So if I eat its horrible and it messes with my potassium evenmore and so I have been eating very little (maybe 700-800 cal ) a day. So I am having a MR enterography on May 25 to see if I have a twist or kink going on in my small bowel causing all the new symptoms again. They are afraid to do a CT on me as I have had a severe amount of radiation exposure and actually am seeing my OB ( just had annual with NP) and because its too dangerous for me to carry a child myself, the risk for CA, recurring pelvic pain, recurring bursting ovarian cysts they are discussing a possible hysterectomy. My urology surgeon said my WORST case scenario would be a urostomy, but Im trying everything to avoid this and its just hard and tiring trying to get everything to work together. This inertia has taken over my life and I have had only a six week stretch at most without being in the hospital in the last 2 years. Anyways....I think thats the jist. I am still obviously out of work....I never would have expected the surgeries (8) and complications to have taken me to where I am today.

Allie and I still talk everyday, she is hangin in there. They are consulting for a stomach pacemaker as her gastroparesis is so sever before they decide 100% on the ileostomy. I believe as well as she that an ileo seems like its a necessity at some time...I think now. The poor thing is miserable with eating. I guess their reasoning is that they wonder if the stomach pacemaker is trialed and works and placed will it help the rest of her symptoms and I honestly think her rectum is an obstruction just as mine was. I do not know what will happen, but she has been super busy taking 6 classes qand is finally down to one....I hope that she will have more time to come on here and get some support as well as myself. I miss all of you so much and miss talking to you :( Please update me as I did not have time to reas back and I am sure there are a lot of newbies!!!

Love you.

Lizzie

Posted 5/20/2011 3:10 PM (GMT 0)
oh my sweet sweet friend..... it breaks my heart reading all of this. i don't even know how to begin to express how bad i feel for you, sweet girl. such a wonderful and amazing person you are to go through all this and at such a young age. you deserve so much more out of life. wish i was close so i could come to see you and just be with you :( and poor Allie. i wish things will finally work out for the 2 of you.

i'm doing ok. my small intestine is really slow. even if i eat liquids all day, if i don't drink my prune and pear juices, hardly anything will come out to the bag. even with these juices i have to eat only soft and liquids and small amounts, otherwise even the juices won't work. but i manage ok and it's the best i can get. my surgeon once told me that we can do the stoma higher up in my ileum - 1 meter upper (w/o taking out anything), but i don't want to go through that experiment. i can eat enough to keep my weight and i'm ok.

i had few UTI since surgery, but doing ok now. as long as i make sure to drink cranberries juice every day, the UTI doesn't come back. i quit drinking it a month ago for more than 2 weeks and it came back, so now i don't dare quiting it.

i still havn't gotten back to work. i need to find a new job. i have disability - only 65% and it's just peanuts. i will have to find a job soon, but it's really hard. thinking of studying something, like farmacy or optics.. not sure yet. problem is it's hard for me to consentrate on studying, but i can try.

i'd like to talk to you, Lizzie, if it's ok for me to call on Saterday night (your Saterday morning)?

love you sweet girl!

Posted 5/20/2011 6:06 PM (GMT 0)
Lizzie,

I don't come here offen any more as i am very miserable. But i want to throw something out: you could ask for a suprapubical bladder catheter which i have - at least for the meantime before another solution is found.

Its a nasty thing for the long-term but would help you with the electrolyte abnormalities, and prevent kidney damage and urinary tract infections. This is Not a long-term solution: i have had my catheter for 3 years and have now multiple complications from the use of antibiotics etc.: incredible nerve pain, have had vasculitis etc....and i may have developed an auto-immune Problem.

I don't know why your doc just give you lasix and don't take care of your bladder. If you do self-catheterization there may be some urine Left in the bladder. This was in my case as the bladder spasms prevent the complete emptying even with a catheter.
Posted 5/23/2011 9:37 AM (GMT 0)
Lizzie i am not surprised you havent been on here  - you have had so much going on and ditto with what Hodaya says - it is incredibly sad what you have gone through with all your surgeries which i cannot remember how many !  And WE thought we had it bad cry

i was doing ok until i had the reversal several months ago but it is not going well and it seems i will go back to the ileo as no real quality of life now.

i hate the thought of another operation and the worry of complications too. x

Posted 5/23/2011 10:15 AM (GMT 0)
Lizzie, i texted you, but havn't got an answer from you. did you get my message?

Sarah, hope things work out for you too. you've been struggling hard and my heart breaks for you.

Karen, i know what you mean about having another surgery. hopefully everything will work out ok and you'll have you're health and quality of life back.
Posted 5/25/2011 6:16 AM (GMT 0)

Hi Everyone!

 

So sorry it has been awhile since I have been on. I went and took 6 classes (definitely a "what was I thinking?!" moment), most of them sciences, so that took every last bit of time I had.

 

I have a big prayer request tonight...Lizzie's test to look for twists/kinks/strictures is today (Wednesday) at 3 PM Eastern time. Please pray all goes well. She has hardly been able to keep anything down for weeks, and for this test she has to drink quite a bit of contrast liquid. They will also be giving her IV glucagon to slow down her intestines so they can get a good picture. This is very worrisome because anytime she has been given something to slow her intestines down, she has ended up with an obstruction and in the ER. Please pray that this does not happen!! Pray that they can clearly see what the problem is, that the effect of the glucagon is very short and that it does not keep her intestines asleep- pray they wake up quickly and fully, and pray that the contrast liquid passes quickly. We all know how miserable it is to have contrast stuck inside :(

 

Her appointment with the new internist last Friday went really well. She likes him a lot, and he is very thorough. He feels like the fluid retention is due to her serum proteins being low (as a result of malabsorption). Low serum protein levels can trigger nephrotic syndrome in which the kidneys recycle or hold on to excess fluid instead of excreting it. He is running a ton of bloodwork to find what's going on.

 

Tons of catching up to do on all of you! Please keep Sweet Lizzie in your thoughts and prayers!!!!!!!

 

Love to you all!

 

Allie

Posted 5/25/2011 8:43 AM (GMT 0)
Poor Lizzie - i have just said a prayer for her - only God knows why she is going through such testing times... :(
Posted 5/29/2011 7:29 PM (GMT 0)
Hello all! Lizzie all you need to know is that we are all still here for you and will always be. I think about you literally every day! Wondering how you are and just wishing that you could feel well. You have been through more than any of us can even imagine. I know that there is no way I could survive what you have. There is a reason why and I believe it is to help others in educating and supporting the rest of us. You have always been there to encourage me and get me to where I am today health wise. Please dont stay away from here is if is because you dont think we want to here about how badly you are doing. Because we care so much about you! We are all here to support each other even if we are so far apart. I care for so many of you and you guys are in my life always. Love you all.
Posted 6/2/2011 4:18 PM (GMT 0)
Hi Everyone,

Please excuse any glaring spelling/grammar issues...first attempt posting from my phone.

I am asking you all for extra prayers for Lizzie. She is not doing well at all. The vomiting continues, as well as the horrible distention with even a couple bites. The MRI didn't show anything, although her new internist is going to get it and give it a thorough look. Her labs are puzzling as well. The internist drew her albumin at 4.4 last week. Her albumin has NEVER been that high, and we suspect lab error because that would make her serum proteins higher now, in a time of frequent vomiting and malnutrition, than when she was on tube feeds. They are redrawing labs next week, but I want her back in there today or tomorrow. Her B-12 is way below normal due to malnutrition/malabsorption and her lack of terminal ileum; vitamin D is way low too. Kidney function looks ok, thyroid was fine; she's not diabetic, yet is extremely thirsty all the time, and she still has quite a bit of edema from holding fluids in her tissues. Her pain has also skyrocketed. Please keep her in your thoughts and prayers...she is so tired of this, discouraged, and feeling like no one is doing anything. She's having a nutrition consult per her surgeon's recommendation; pray that between that and the internist they can get a solution such as TPN worked out.

Thank you all! I will keep you posted...pray for and believe in a miracle for Sweet Lizzie!

Xo
Allie
Posted 6/2/2011 5:01 PM (GMT 0)
Allie,

have you brought up the idea of SMA syndrome?

Sarah
Posted 6/2/2011 5:19 PM (GMT 0)
will say a prayer for Lizzie!!
Posted 6/2/2011 6:06 PM (GMT 0)
Sarah, I have not brought up SMA. I don't see how it could be that since she did ok for awhile after the feeding tube was removed. If the feeding tube was holding a portion of her small bowel open, the collapse would be apparent immediately after the tube was removed. Also, the caliber of those tubes is so small that it wouldn't hold anything that was occluded, open enough for food to go through, and she was eating solids with the tube. The MR enterography also showed no narrowings, no areas of compression where things were getting stuck. It is certainly a puzzle, but I don't see how SMA could be the answer. As always though, your research is brilliant and I so appreciate you taking the time to hunt for possibilities! How are you feeling? Any word from the doc you went to see?
Posted 6/2/2011 8:06 PM (GMT 0)
sma syndrome is a very puzzling disease. has she lost weight after tube removal?
weight loss can worsen or make sma syndrome reappear.
as far as the pediatric surgeon goes. would be too long to write it here down. if you are interested just visit my caring bridge site. i have uploaded some photos of me.
Posted 6/3/2011 3:21 PM (GMT 0)
Lizzie,

Praying for you big time!  I cannot even imagine having your situation go on for so long and for things to get so much worse.  Your new internist seems like he is very knowledgeable.  I so often ask "why" for all of us, but I think the real question is "how?"  I hope they discover the "how" for you very soon.

I am coming home on the QM2 from an amazing journey to Israel during which time I toured a whole day with Hodaya.  It was fabulous.  At the wailing wall in Jerusalem you write a prayer on a piece of paper and put it in a crack in the wall.  I wrote a special prayer for you and put it in the wall.  You are always in my thoughts.  Best wishes.

Rosemary

Posted 6/22/2011 1:34 PM (GMT 0)

Hi Everyone,

 

I have lots of catching up to do on here, but wanted to check in and give you all the update on Lizzie. Last Thursday was her consult with the adhesion specialist in Cincinnati. The consult went very well, and he spent about two and a half hours talking with us about her history and current problems. He made it clear that there would be no rushing into surgery given how her body has not reacted well to her previous seven. He admitted her to the hospital for observation and to get her well hydrated, get her labs all back in normal ranges, and ensure that her bowel had every opportunity to function optimally. X-rays upon admission showed a partial bowel obstruction, and subsequent daily x-rays showed "improvement" everyday. I asked him how this was possible, as her distention and pain were not improving. If anything, they were getting worse. He continued the plan of hydration and maybe TPN if needed (which was never started). Still no change! On Saturday, they advanced her diet to full liquids and then had to take her back to just clears because the full liquids increased pain and distention further. During this time, he maintained that the x-rays were improving. My thoughts: so what! Clinically, she's not improving! It didn't take too long to realize that he wasn't sure what to do.

 

Fast-forward to Monday morning...I had to leave the hospital at 9:30 AM to drive the six hours back to MI, then catch my 5:30 PM flight back to Dallas :( No doctors, dietitians, or anyone came to see her before I had to leave. It wasn't until 3:30 PM that the doctor came to see her. He informed Lizzie that she was being discharged and that he felt the problem is her gallbladder. He instructed her to get to Mayo Clinic ASAP to see if someone there could remove her gallbladder laparoscopically and take a look at the urology side of things. Keep in mind that he is now diagnosing her with a bad gallbladder without a SINGLE gallbladder-specific test. He also knew the situation- we were from out-of-state, I was visiting from Texas, I had to leave on Monday AM, etc. He knew ALL of that and could have discharged her in the AM so I could have driven her home. Instead, she had to book a last-minute flight from Cincinnati back to MI.

 

Back in MI, she has been admitted. The admitting ER doc basically politely called the adhesion specialist an idiot for getting everyone all panicked about her needing a stat cholecystectomy 10 hours away at Mayo before any testing was done. They did some testing on her gallbladder, and so far, everything is FINE!! They admitted her for gastroparesis, put an NG tube in, and are having the GI physicians do a full work-up. Because she has had so many back-to-back surgeries, she has only seen colorectal surgeons lately. It will be great to get GI docs back in the mix, as they are more focused on treating the problems than just cutting. If something does eventually turn out to be goofy with her gallbladder, there are doctors in MI who can take care of that. Cleveland told her that she will likely never be able to have a laparoscopic procedure done, so it is pointless to travel all the way to Mayo to be told that again. Her urologist in MI came from Mayo, so he really knows what he's doing- again, making a trip to Mayo unnecessary.

 

Keep praying for answers! Love to you all...I will catch up soon, and keep you posted!

 

Allie

 

Posted 6/22/2011 1:54 PM (GMT 0)
Allie,

Thanks so much for the update. Well, so much for that adhesions specialist. All I found on him were good things, but not everything on the net is to be believed. Then there are other adhesion specialists in and out of the country where there are very mixed stories on them. A stat gallbladder removal without any testing.........yeah that would be a wake up call! Glad that was squalshed. So good of you to go to be with her and what a bad timing of her being discharged, unbelievable. Glad she is back in caring hands, but sure hope someone can do something about all this.

Thanks so much for the update Allie. Prayers to Lizzie AND to you. Rosemary

Post Edited (esoR) : 6/22/2011 3:00:38 PM (GMT-6)

Posted 6/22/2011 10:03 PM (GMT 0)
thanks so much for the update, Allie. as we know, not only that x rays don't show much, but even ct scans dont. so we all know that what matters is the simptoms. i truly feel so bad for her for all she's going thru. all we can do is pray for her.
Posted 6/22/2011 10:46 PM (GMT 0)
Allie,

Can Lizzie sleep at night? Does she get rest? Or is she basically up nights? I don't know how she is doing this for so long. It's going on years. Stronger prayers for her. I was literally at my wits end by the end of 13 months, not to mention REALLY hungry, weak, and SO exhausted. I remember being on the phone to the patient advocate at the hospital where I did end up getting help telling her the whole story and telling her I was literally starving to death due to glued together guts and no TPN for a year. The next day I got a telephone call from my adhesion lysis and ileo surgeon who quickly set up my O.R. date. Interesting.

Anyway, good luck to you, too, with your appt for gastric pacemaker. I think it is June 27? If I remember correctly. If Lizzie's issue is not completely adhesions, have they thought of a gastric pacemaker for her? The only test I had that honestly showed the scarred in small intestine was done at Mayo, the CT Entercolysis test. NOT pleasant, but did show the truth. Most accurate test for small bowel adhesions that exists to my knowledge.

Rosemary
Posted 6/25/2011 1:44 AM (GMT 0)
Just do not understand what in the hell these doctors are doing with Lizzie. She just keeps being passed around from hospital to hospital. Why cant they just keep her somewhere and find out what the problem is????? She has been going through all this for years. You would think she would have some kind of diagnosis. If I am this frustrated for her I cant even imagine what her and her hubby are going through!

Went for my first dirtbike ride of the season and wrecked just once. I have put on about 20 pounds since my surgery and I can definetly tell the difference in my bike control. It weighs about 250 lbs so every bit helps. Just feels good to get out into the mountains and not see another person. So peaceful.

Taking my kids to a huge amusement park this weekend. Should be fun for them and very tiring for me!! Amazing what you do for your kidos!!
Posted 6/25/2011 2:11 AM (GMT 0)
Marisa,

Two things I think are going on re: Lizzie (Just my opinion but based on my extensive experience with gut adhesions):

Lizzie may be trapped in the White Coat Wall of Silence like I was. By doing something for her or giving her a diagnosis, new docs chance the fact that they will be saying in essence "patient injured by too many surgeries at other facility." Many Docs will cover for one another at the expense of a patient. Unless you find one that will step over the White Wall and do what can be done like luckily I found and like luckily his work is still keeping me alive. I have been lucky so far anyway.

A less political view is that from what I gather Lizzie has either some motility issue combined with numerous adhesions that are basically closing her small intestine shut. The question that I think is baffling docs who are honestly trying to help her is: does she have a motility (functional issue) OR are the adhesions from ALL Those surgeries at CC making it so that her intestines CANNOT function. A question of which came first, the chicken or the egg. At this point I think docs who are honestly wanting to help are hesitant on more surgery because more surgery makes more adhesions. UNLESS an adhesion barrier is used and that is used to reduce the number and severity of adhesions not to completely eliminate them as unfortunately that "cure" has not been found yet by medical science and I think it is a LONG way off.

Mark Puder, MD is doing some research at Children's Hospital in Boston on trying to eliminate or reduce adhesions as is Thomas Hilgers MD in Omaha Nebraska. But research is slow and or limited to specific techniques for specific surgeries or still in the experimental stages. I have corresponded with these docs and both say it is a tough issue. One even said he does not know why more advances have not been developed as adhesions are such a common issue especially amongst women who tend to undergo more surgeries.

So, though I think in a way, she is being caught politically, I also think that the docs who really want to help are either baffled or dare not do anything for fear of making things worse. But it comes a point of how much worse can things get. Having been where she is for 13 months, that is my take based on what I went through. BUt as you say, she has been going on for years with this. I hurt for her. It's like praying for a miracle. Tomorrow I will write to Dr. Hilgers on her behalf, not by name, but I will ask if he knows any adhesion specialists who can help her. He does a specific type of adhesion prevention when he does reconstructive pelvic surgery which miraculously leaves patients near adhesion free, but it is a specific set of steps and he said he personally cannot adapt it for cases where people already have adhesions as he is not a general surgeon, I believe he is a GYN.

So, I think that is what is happening Marisa. Glad you are out there on your bike. I just got back from a trip. I think of Lizzie a lot. So young and so pretty loving husband everything to live for. There has to be a way. Rosemary
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