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Posted 4/6/2010 7:42 PM (GMT 0)

Hi Everyone,

Wow; I know it's been awhile since I've been on but there's so many new people that I feel like it's a whole new place.   I tried reading up on some of your posts but I haven't felt well so I didn't read back too far.  I would like to welcome all of the newbies and give you a short intro of myself.

I had a subtotal in 7/08 and have about 2 inches of colon left.  My surgery was open, was in the hosp. for 5 days, had NG tube for a little over a day, had an epidural for pain control, started with 20+ bms a day then had 8-10 by the time I went back to work full-time 6 weeks later.  I am a textbook success case as I have had NO complications but I still to this day adamently follow the low residue diet.  I see my GI dr every 6 mos and they still have me remain on this diet.  I strongly believe it is a big part of my surgery's success, that and the fact that I followed all the 'rules' post op for the first time ever. (didn't clean, lift things, etc.  but I had to get back to work by 6 weeks so I had to let my body heal).

If anyone wants to ask any questions, this is the best place to get answers from.  Everyone on here has an infinite amount of knowledge regarding the colon and anything to do with it and there is no question that can't be asked.  So many people on here have helped other and led them to get the necessary help they needed.  Know that everyone on here is always here for you and is always praying for you to become healthy.

Now; where is everyone??? Hodaya, Janie, Jenise, Jen- hope you are doing ok and just very busy.

Marisa- so sorry to hear that your gall bladder surgery didn't go too well.  When I had mine it wasn't a piece of cake either, but I've never recovered well from any surgery except the colectomy.  I had incision infections, 2 gall bladder attacks afterwards as well as very slow healing, it took like 3 weeks to finally start feeling better.  I hope things are better for you soon.  Praying for you girl!

Lizzie-My dear, dear girl; my heart goes out to you.  I pray for you everyday more than once and I will continue to do so.  I am so worried about you but I have such a strong faith that I believe you will get through this; you are such a fighter and you will persevere and conquer!  I put your number in my phone so I'll be texting you soon.  Love you girl!

Tracy-I hope your dr figures out what he is going to do soon, summer is almost here and I don't think you should go through another one without having something done.  Always in my prayers.

Leslie-Thanks for becoming the new person on here of strength and for helping so many!!!!:)

Rosemary-So glad you are back and to see you giving your motherly advice.  Don't be drinking too much juice and such, let it get through your system before you overload it.  I can't drink any kinds of fruit drinks or anything like that or I get severe D. That's why I stay so strickly on the low residue diet.  I was on a Vegas trip and had one small margarita that put me in severe D so can't even have a small drink either :(

Just a quick update, I had another kidney surgery on Thursday.  My dr almost didn't do it because I was sick with a sinus infection and respitory infection, but the NP had me use my inhaler before the anesthes. saw me due to my wheezing and he let me go ahead with the surgery.  My dr lasered my sliced, lasered, and ballooned my ureter then put in a huge stent for the next 6 weeks.  He told my husband that I was going to 'hate him' but he did what he had to do and hopefully this will work and I won't have to have part of my kidney removed this summer.

The stent is extremely uncomfortable and I have no clue how I'm going to get through the next 5 weeks of work with it in.  Any movement causes it to go into severe spasms.  I texted my dr and he's going to call me back later when he has time to talk so we can figure out a plan for the next 5 weeks; most likely I'll just have to suck it up and just go to work but hopefully he'll have something up his sleeve to help.

Always know that even if I'm not on here, you are all in my thoughts and prayers and you continnue to be a big part of my 'family.'

Love and hugs to all,

Judy

Posted 4/6/2010 9:33 PM (GMT 0)
Hi Judy,

I don't know how you're working with all your kidney issues, you are truly a strong woman. Grape juice, anything with Sucralose, sucrose, sorbitol, and any alcohol gives me severe ileostomy diarrhea. Auuuugh! These would have been common sense suggestions from docs for my original issue of incomplete rectal emptying prior to my 2006 unneeded sigmoid resection which lead me to the ostomy and all. If a doc had said, have lots of sucralose, sucrose, and other fake sugars, I would have easily moved my bowels back when I had my colon in tact. As all that fake sugar does promote diarrhea even in people with all intestines large and small intact. what an easy suggestion that would have been. Interesting how the simple things are not mentioned to the patients. Oh, well, for the present, I need to avoid these too.

Good luck to you, Rosemary
Posted 4/6/2010 10:29 PM (GMT 0)

Hi everybody.  I'm catching up from being away for a few days.  As always, I'm praying for each of you . . . Amanda, Marisa, Rosemary, Leslie, Lizzie, Tracy.   Hodaya - don't think we've met.  Nice to meet you Judy.  I've only been around a little over a month.  

Friday I have an appointment with the gastro doctor.  I did it his way for over a month with no results so I'm going to bug him again.  Originally he wanted to see me the end of May but I am not waiting that long. I'm tried of giving up one day per week to be in pain (colon spasms) and nauseous after taking a handful of Dulcolax.  Sure hope he listens to me this time.  I need to be more forceful but I was always a little good two shoes.  Think Lisa Simpson from the Simpsons.  LOL

Enough for now - I need to do some more catching up.

(((hugs)))

val

Posted 4/6/2010 10:54 PM (GMT 0)
Judy,
So good to hear from you, but I'm sorry you're having such horrible kidney issues. I hope your doctor can come up with a plan for you; I'm just so glad your colectomy was such a success!!

Rosemary,
Even without a colon, I can eat sugar free stuff and drink any drink I want. The first time I had a rum and coke after surgery (probably 2 months afterwards) I had horrible diarrhea, but now I can drink wine, rum or kahlua.....and nothing happens. If I eat low fat ice cream, sometimes it will push things out a little (so I try to eat a little every night), but I don't get D. Because of my issues with still having trouble going, I bought fat free cookies to eat during the day, and nothing happens. I'm going to try to propel water to see if that does anything. For some reason, a Dairy Queen Coolata makes me go, and I think it must be the combination of coffee, cream and sugar substitutes.....but none of those things individually help at all, and nothing I've tried ever gives me diarrhea. I know it's strange, but it's true in my case.

Val,

I hope your doctor listens to you. Going to the bathroom once a week only after taking huge amounts of laxatives is just not fun, and not good for you. I've always been a goody two shoes too, but the older I've gotten (54 now) the mouthier I've gotten!! LOL You must still be young:)

Lizzie,
Praying for you as always sweetie. Hello to everyone else!

Janie
Posted 4/6/2010 11:04 PM (GMT 0)
Ji Janie,

Yeah That Propel Calcium water has sucralose, srucrose and various other fake sugars. You can get the packets also and mix it with water making it as strong as you want or buy it already mixed and bottled. If you mix it yourself and make it strong it may help you go. Could be the ultimate cure all. Let me know. Wish I'd known of it with my original issue. Strong doses should really work for you especially if you have no colon. This could be a major break through for all of you still dealing with constipation with or without colon.

We could put all these docs out of business :-) But do give it a try and report back. Maybe only my system is sensitive, but still would have likely worked for me. Rosemary
Posted 4/7/2010 12:42 AM (GMT 0)
What the hell????? I have never been writing and had it disappear like some of you have. Well, it just happened to me I have to say it is just a smiggen annoying!! LOL Oh well, here we go again.

Lizzie, You do not have to worry one bit about complaining to us. We all love you and want nothing more than for you to get better. I totally know how you feel about your husband. I felt the same way. Its just so hard because you feel like you are not being a good wife. But, you have a good man who is going to stand by your side no matter what. Other wise he would have left a long time ago. I just really worry about you being home by yourself. There has got to be someone that can help even if it is a home health nurse. I just wish I lived closer to you cuz I would so be there.

Val, you bug that doctor. It is not right to be living like this. Before surgery I would only go about one a month. It was terrible. I lost about 40 pounds and got very sick. It felt like I was giving birth every time I did go. By the time I had surgery my colon had stretched to about six feet, was very stretched out, had polyps all over, and was not even attached to my abdomen like it is supposed to be. It was just very sick. And needed out. You need to express to your doctor or tell him you will find someone else.

Janie and Judy so glad to hear from you both. I love you both so much. I almost look up to you two as my moms. You two and Rosemary also. I hope thats ok. With my own mom being so ill I have to find someone who can fill that role. So you guys are my victims!

Tracy, I totally agree with you on the mag citrate. I cant even say that without gagging and crinkling my nose. At least it did the job though.

Well, I have to go be a mother to my three little terds. Will check in with ya all later.
Posted 4/7/2010 1:28 AM (GMT 0)
Marisa,
You're so sweet. Of course I'll adopt you.:) I have only one son, but three stepsons. I always wanted a girl!!

I'm so glad to hear you're feeling good now. You and Lizzie are just way too young to have to deal with all you have.

Rosemary,
I'm have to work tomorrow but I'm sending my hubby out to get some of those packets! Thanks for telling me about them. I think alot of my problem is the rectocele and I've known I had pelvic floor issues before I had the colectomy. The miralax keeps things moving at least, but I still need to do enemas very often. The coolata in the moving gives me a big push and cleans me out pretty well until I eat later in the day. I would love to have something other than the coolatas to help like that--for one thing when we travel I can't always find a Dunkin Donuts, and also, I'd much rather drink the water every day. Those coolatas are delicious, but also full of empty calories!

Janie
Posted 4/7/2010 2:39 AM (GMT 0)
Hi Janie.  Thanks for the encouragement.  Nope, I'm older than you are - 57 next month.  I just need to take lessons from you.  *smile*  It would be great to have you ladies with me when I see the doctor Friday.  I feel like such a wimp.

Thank you too Marisa.  Bless your heart - you still have little ones at home and dealing with what you are!  How old are you sweetie?

Better run.  Hubby has already gone to bed and I still have lots of stuff to do before I join him.

Love and hugs,

val

Posted 4/7/2010 6:20 PM (GMT 0)
Judy

     Hope that you will do well and make it through this hurdle...my thoughts and prayers are with you..

Leslie

Posted 4/7/2010 8:23 PM (GMT 0)
Lizzie,

based on your symptoms and signs of inflammation I think you should be tested for an underlying connective tisseu disorders which can cause all your GI troubles(motility issues.

do talk with your RA about this possibility since connective tissue dirsorders are rare and rarel suspected. There are several forms of them, for expample Scleroderma, Lupus erythomadeus, Amyloidosis, Ehlers-Dalos etc

If steroids help you there might be the chence that intestinal problems caused by a aconnective tissue disorder can be improved or even reversed with steroid intravenous therapy.

Personally, I have spent Easter in the hospital again.
I had an infection of the hickman (feeding) catheter 1.5 months ago and was hospitalized for that. I had been out of hostpital only one week: I had an infection of my hickman catheter again - only 1.5 months after my last one.
I have had an antibiosis at home and finished it. Howeverm the infection has not cleared up and I developed fever again. I had to be admitted to the hospital again which meant another staying and endless waiting in the ER.
I am so fed up.

I am just back from hosspital. I had to stay 6 days this time. I have spent Easter in the hospital which is nothing new for me since I have been in the hostpital on holidays several times including christmas which was really bad.
I was given high doses of antibiotocs intravenously again - "the same procedure than every month" - I guess it is partially my sarcasm that makes me make trough this all somehow.
They said there are no more antibiotics left to treat me, I have developed much resistences which can be dangerous when I should get a really life-threatening sepsis/infection since all the antibiotics have been already used.

Well, all this was quite useless which I expected.
My hickman catheter was removed, I am going to have another antibiosis. On Friday I will get a new catheter on the other side of my shoulder which will mean a little surgery again - all in all my 5th surgery within 2,5 years.
Well another chance ....maybe more luck? I doubt. But the old catheter had to be removed, this was clear.


Sarah

Lizzie,

just another thought: Maybe you can join the lupus section of this forum and may ask for similarities between their and your symtomps
https://www.healingwell.com/community/default.aspx?f=29

Post Edited (pelztier86) : 4/7/2010 3:46:51 PM (GMT-6)

Posted 4/7/2010 8:37 PM (GMT 0)
Peltz,

Man oh man, you and Lizzie really need a break, not to mention some others on this forum. Prayers with you all. Rosemary
Posted 4/7/2010 9:32 PM (GMT 0)
Hi everyone.  It has been quite awhile since I have been on here.  I went back to work on March 22nd and have been very busy.  Between work and the kids softball and baseball practices I stay crazy.

I am going to make a better effort to keep up with everyone.  There are so many new people here.  For those new ones I had a total colectomy with an ileorectal anastomosis on October 26, 2009.  On November 17, 2009 I was had emergency surgery to take care of infection and adhesions.  Then I had one complication after another and ended up in the hospital 4 more times for vomitting and pain.

I lost 24 pounds which wasn't good since I weighed 125 to start with and am 5'6".

I am happy to say that I have gained 15 pounds back and feel good.  I am back at work, beginning to exercise, have more energy, and have several bowel movements a day with no problems.  Like Judy I am sticking to a low residue diet.   The only issue I still deal with is off and on nausea and I probably have one throwing up episode a week.  Zofran and Phenegran take care of it so it is manageable.  The nasea and vomitting are really not a problem from surgery but the ongoing gastroparesis that I deal with.

I was just wondering if any of you that had the surgery can eat salads or steamed veggies.  My GI doc. said that they are not forbidden but he would still not advise it.  I cannot tell you how much I miss salads!  So just wondering if any of you can handle it yet.

Jen 

 

Posted 4/7/2010 9:50 PM (GMT 0)
Jen,

for someone with gastroparesis (I have gastroparesis as well as generalized intestinal dysmotility)) salads and raw fruits are very hard to digest and cause increased symptoms like fullness, vomiting etc..so you better stay away from these things as well as food with much fat..try to stick to a low-fat, low-fiber diet.
Posted 4/7/2010 10:20 PM (GMT 0)
Jen   I had my total colectomy Feb 19 and just on Sunday I introduced raw carrotts for the first time and salad, and I had no trouble.  So now I am going to try fresh fruit...but the salad came out looking like lettuce, just so you know.  I can eat almost everything, have not tried to eat any deep fried foods yet, but I have never been one too fond of those types of food.

You just have to go by trial and error.  I am making spaghitti sauce today to see if I can tollerate that...so we shall see.

I have lost a total of 115 lbs over the past year, and I have only gained 3 lbs since the surgery.  My doc says I will probably not gain weight, do you find that to be true.  I eat a lot of pies, cakes, cookies, bread, candy...and barely gained 3 lbs, but it depends on what day I weigh.  It varies...

Hope your better

Leslie

Posted 4/7/2010 11:36 PM (GMT 0)
Hi Leslie I eat a lot of carbs and foods that would probably cause a lot of weight gain for others but I am holding between 115-117. I have been at that weight for a few weeks now. I was never one to easily gain weight to begin with. I think that since stuff moves through us fairly quickly we don't absorbe all the fat. I don't know just a guess.

I did eat a little lettuce on a taco a few weeks ago mailny because I just didn't think about it being on the taco. As you said it came out as it went in which worried me. That is why I haven't eaten it anymore I am so scared of getting a blockage.

Peltzier I do get full quickly so that is another reason I am careful about what I eat. I do hope to be able to introduce lettuce and other things later but for now I guess I will stick to the low residue diet :(
Posted 4/8/2010 12:06 AM (GMT 0)
Lizzie,

here is a good link about lupus: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523
Posted 4/8/2010 12:29 AM (GMT 0)
Lizzie,

Good luck tomorrow, Thurs at CC. Rosemary
Posted 4/8/2010 2:27 AM (GMT 0)
coastfishin
  Hi, no don't let that scare you cuz its paper thin by the time it comes out...  I think your right bout the weight thing, cuz the lg. intestines is where all the fat is absorbed I think??  I use to gain weight easlily but so far not now...since they redid my plumbing..

Be well

Leslie

Posted 4/8/2010 3:25 AM (GMT 0)

Just got to Cleveland and my appt is at 1130 am....drove five hours in a torrential downpour of rain. I am scared and teary. I cried about an hour of the drive. I am interested in the connective disease issues....I saw the rheumatologist and he is runnning a whole bunch of labs and then I have to follow up later next week and I will talk with him about these ideas. I was in the ER all night again last night...started at three am, everything was fine and then all of a sudden tube would hit resistance. They gave me lots of pain meds and now the tube is in semipermanently again. I have some relief from the steroids, but not like I expected, but I am guessing 10mg of prednisone is a low dose. He is running at least 20 labs that made no sense to me and we will go from there. I saw the pain clinic doctor and he thinks that the fentanyl, norco, and valium are good for me to be on.....so for now I will continue these meds. I have been an emotional mess.

I am so happy so many of you are doing well. Rosemary, CC said 25% problems with the internal pouch so I will go with that number versus 60%. It works great and then I get inflammed....I just do not k now if its narrowed or what is going on or why I am all of a sudden so swollen everywhere. Thanks for all your support and prayers. I will try and update when I get back into town tomorrow night. I have to get these labs done tomorrow and then pick up all my scripts. I miss so many of you and pray for you daily. Please keep me in your prayers tomorrow as I have no idea what they will say. I sw my old GI friends in the ER this am and they said I need to gain weight and I feel like I have!!!!!!! I think I am about 98 and 5'2 which is not that bad I guess.....I think I was as low as 93.....so its an improvement!!!!!!!

Love to you all.....

Lizzie

Posted 4/8/2010 3:51 AM (GMT 0)
Lizzie, I'm so concerned about you. Please know that you have my prayers. We'll be waiting for an update when you are up to it.

Sarah, bless your heart. Praying for you as well.

(((hugs)))

val
Posted 4/8/2010 4:14 AM (GMT 0)

Hi Girls,

It's so good to hear from so many of you!  I have to spend more time on here chatting bc you all make me feel so much better.  I was so frustrated yesterday with my whole kidney situation & my dr (who is absolutely amazing) but just doesn't get it!  He & I are on cell phone basis only, I never call the office, just him, anyway, I wanted to know how he was going to get me through the next 6 weeks in this condition and he offered different meds, which we have already tried, then he said eventually your body will adjust; IT NEVER DOES, then he said he will take out the stent in 4 weeks.  At that point I just wanted to say just take the kidney out bc you have no idea what it's like to have 24 high needs 7 year olds need your attention all day long 5 days a week.  I'm still trying to figure out how I'm going to get through the day.  My dear husband said he's going to give me next week and if I am in too much pain or too exhausted then I'm going to take a leave w/o pay for the remainder of the time.  I agreed I would do this but it absolutely kills me bc I have tried to do anything to stay at work this year especially with the whole grievance I have in about having to pay back 30 days of pay for last year when I got c diff form my last urologist.

Anyway enough of me whining!!!!! 

Val- If your dr doesn't listen to you, go to another!!!!  It took 6 GI drs for me to finally find one who knew what was wrong and I've had 7 urologists!  You have to be your own advocate!!!!!!  There is a doctor who will listen and who will treat you with the respect you deserve!!!!  I will be praying for you.

Marisa-I'll be your Mom anyday; just don't tell me you're moving in with your 'boyfriend' or anything like that cuz I didn't raise you that way LOL. and I have enough of that will my 2 girls who are finding their way:)

Leslie-Thanks for the prayers, everyone of them helps.  Please, please don't eat salads, raw veggies, fruits so on.  I know your dr may have said it's ok but many drs have said it's ok to several people on here and many of them have ended up with obstructions.  It takes a loooooong time for your body to heal and your surgery wasn't that long ago, and so far you are doing very well, don't risk getting a blockage.  I know those foods look tempting and yes I truly miss them but your health is much more important than food.  Also, you can and will eventually gain weight once you've had a colectomy.  The fat is absorbed in the small intestine, the water is absorbed in the large intestine.  My gi kepted wanting me to gain weight after my surgery and I didn't want to, I lost about 12-14 lbs  but I slowly started gaining it back this past year, not all but about 5 pounds and he is happy that I have.  Of course I eat peanut butter swirl ice cream EVERY night so that most likely keeps the 5 lbs on LOL.

Jen-So glad to hear you are feeling well enough to go back to work; oh the days of softball & practice, etc.  Mine was filled with dance & cheerleading for years & years.  I was so happy when I finally didn't have to do that every night of the week.  People would say don't you miss it & I'd say no cuz I work with little children everyday so I get my child fix through them :)  I eat canned fruits and steamed veggies everyday just not fresh or raw ones.  And yes I REEEEEEALY miss salads!!!!!

Peltz-Sorry to hear you were in the hospital on Easter.  I know just what it's like to be in there so much and it really s$*ks!!!!!  I've had surgery every year since 2003 as well as pancreatitis and this past year I've had I think 10 kidney surgeries, it may be more I've lost track.  I don't know what I would do with out my faith and my husband!  And yes, I've grown to have a very high tolerance to pain so that's why I work through most of my situations.  Many people have tried to talk me into going on disability but I can't bring myself to do it.  I hope and pray your surgery goes well and you feel better soon.

Rosemary-Unfortunately we have both had some very incompetent drs; I luckily got away from mine before they removed the remaining 2 inches of my colon unnecessarily, or I too would have ended up with an ostomy when what I really had was c diff.  That is why I'm so vocal to people about seeking other opinions and never settling on what their dr says.  I also stick around on this site bc my surgery was so successful and I want to let others know that this surgery can be successful with out complications. And I just love the people on here!!!!!  :)

Has anyone heard from Hodaya????

Lizzie-Praying for you, Love you

Tracy, Jenise and everyone else,

Peace & Prayers,

Judy

Posted 4/8/2010 6:09 PM (GMT 0)
Lizzie

     You poor girl, glad that they were able to help you.  Glad to hear that your on Fentenal,  great meds, along with the narc, val.  Great combo...Hope you feel better.

Leslie

Posted 4/8/2010 8:02 PM (GMT 0)
Lizzie,

your dose of steroids is very low - when an underlying connective tissue disorder should be attacked this is not enough. I think there is the possibility that you don't have problems with the internal pouch per se but that it might be affected by a flare of an underlying connective tissue disorder/collagenopathy as well as the entire small bowel casusing inflammation and subsequently motility problems (=dilation).
If the inflammation was under control the pouch would probably work very well. Your problems with draining it are linked to the inflammation and the thickened mucosa/swelling of the pouch in consequence of the inflammatory process.
Posted 4/8/2010 9:40 PM (GMT 0)
Judy  OMG, I had a bananna yesterday and have had salad 2 times, couple of little raw baby carrotts.........those things will give you an obstruction?  How long should I wait?  I was going to have a sm salad with my spaghitti tonight, maybe I should re-think it.....he told me to introdue things slowly and if I tollerate them he said I would be ok..but that was 3 weeks ago since I have seen him and I go back next week...  Did the other people if you can remember did they have constipation problems?

Leslie

Posted 4/8/2010 10:38 PM (GMT 0)

Leslie,

Did you mean constipation before or after the surgery?  The people that ended up with obstructions ate those foods like 3-4 weeks after their surgery.  I know most surgeons say try to eat what your body will tolerate and mine did too but my GI dr was the one who recommended not to go off the diet.  I have strayed a couple of times (ate like 5 small pieces of fresh fruit) and suffered the consequences (had severe D to the point where I had to take several immodium)so I won't take the chance again, plus I just won't risk an obstruction.

I know that by your signature you have been through so much and I'm sure you want healthy days from now on so if you're like me you don't want to do anything that will even remotely jeopardize your chance of messing up this surgery.

Wishing you only healthy days.

Peace and prayers,

Judy

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