Ilium adaption

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Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/23/2008 2:26 PM (GMT -7)   
I'm writing for my wife, who is having a bad day...one of many over the past few months.  Her history is the following: after decades of constipation she was diagnosed with a redundant colon.  She had resection surgery, which went bad and ended up with a colostomy for a while.  A reversal was done but she had blockages and her colon was removed because her colon was diagnosed as mega size, as was her rectum.  She now has a permanent ileostomy for the past two months.  All of this is just the highlights of the past seven months. 
 
She presently is nearly continually dehydrated and has been getting IV fluids every few days, but her stoma keeps pumping the fluids out after she gets home and she can't drink enough fluids to keep on top of the dehydration.  She drinks Gatorade and other electolye containing fluids.  She takes soluble fiber trying to contain the fluids.  She eats bananas and other food to supposedly thicken her stool.  All this to no avail presently.  Her health is declining and we both are frightened.  I thought there was supposed to be a light at the end of this tunnel where the small intestine assumes some of the duties of the colon.  We have read online obsessively and have found no help.  We hope that possibly someone here can give us some insight and direction.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 2/23/2008 3:00 PM (GMT -7)   

Make sure you wife is eating enough salt to help retain those fluids.  A better hydrating beverage can be ordered online at www.vitalyte.com  This product is far superior to Gatorade, has less sugar and more electrolytes.  It's the only hydrating beverage I drink when I am concerned about water loss.  I am sorry this nightmare just seems to continue.  I wish you boths success in getting the hydration under control.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/23/2008 3:55 PM (GMT -7)   
I agree with Sue - try to cut back on Sugar. Also, eliminate caffeine if possible. Increasing her sodium intake should help retain some of the fluids. Snack on pretzels, even the honey wheat pretzels are good to add a little fiber to slow her system down. Or maybe Triscuit crackers? Bananas, applesauce, oatmeal, rice are all good to slow digestion, help to absorb.

Does she take any Lomotil or Imodium? Those are RX drugs to slow output as well. I take 3 Imodium with water first thing in the mornings and that helps my system get jump started for the day. I also eat a banana every morning with my fruit grain bar. Only 16 months ago, I was on 9 Imodium a day, and still had really watery output nearly all of the time. The change in my diet (no caffeine, no carbonated beverages, no spices and limited sugar) has really helped me slow things down a lot. I have finally gained a little over 20 lbs - much needed weight.

I wish you luck in finding something that will work for her.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/23/2008 6:13 PM (GMT -7)   
thats what i was gonna suggest too. when i first got mine, my doc had me on 6 immodiium a day (2mg tabs).
Now i only take it when i get watery, but its pretty inconsistent sometimes it gets too thick and others its watery so i dont rush so quickly to the imodium. Whens the last time she went to her GI? I'm surprised they have no suggestions for her. please try to stay on top of this b/c dehydration, as im sure u know, is very serious.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 2/23/2008 6:21 PM (GMT -7)   
Don't forget that it takes time for the small intestine to learn its new job. It will get better with time but it takes mountains of patience. I'm sorry she is going through this--best of luck.

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/23/2008 6:53 PM (GMT -7)   

Sue and Peggy, This is Jan typing now.  Thank you for your replies. I ordered some of the Vitalyte and it should be here next week. 

I have tried Benefiber, Metamucil, Loperamide 2mg, and and all the food to thicken the output for the last two months since I had the last surgery and the ileostomy. Nothing seems to help that much.

Was in the hospital for four days three weeks ago for dehydration and back again this week two times for IVs for dehydration.

How long does it take for the output to slow down after surgery? It was slow to start with when I wasn't eating very much. That was for the first two weeks.

The last seven months I have stayed home all the time. The only places I have been is in the hospital or to see the Dr. This has really been hard and am hoping that we will be able to start getting out more before long.

Jan

 

 

 

 

 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/23/2008 7:12 PM (GMT -7)   
Jan,

Sorry to hear about the problems you're having. I take about 4-6 Imodium a day depending on how watery my output is and I was told that those of us without colons can take as many as 8-10 daily. I love my morning coffee, so I take 2 Imodium with a banana and it keeps it thicker, 1 with lunch, 2 with dinner, and sometimes 1 before bed. I also snack on pretzels and goldfish crackers when I drink. I was told that I should eat something everytime I drink, they said that the more you are drinking the more water will be released, food/snacks will help. Now I only sip water unless my stomach is full, an empty stomach is only going to make the dehydration worse. I also drink 1/2 glass of Gatorade once in awhile, but I'm sure there are much better hydrating supplements at a health food store, but can be costly.

I remember how horrible I felt when I was dehydrated with my last flare, I hope that you can finally get this under control and feel better.
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/23/2008 7:34 PM (GMT -7)   

Jan,

Keep your chin up -- things will get better for you.  You may have to tweek your drinking and diet.  Tbraz has good suggestions too. 

You mentioned that you have Loperamide 2mg.  How many and when are you taking them?  Don't be afraid to take them...  like Tbraz said, 8-10 daily can be tolerated for some of us.  I was taking 9 for years, 3 prior to each of my main meals.  My system/body has changed and now I only start with 3 in the morning.  You will get to know your body and will be able to "listen" to it in the future as well.

For now, keep hydrating and snacking....try not to let your stomach get empty.  Drink and snack frequently.  Lots of smaller meals are probably a good thing for you right now.  Switching to less sugary drinks, along with the Loperamide, increased sodium, and frequent snacks should help you.  Oh yea, and try to stay away from fried or high fat foods too.  They tend to run thru a little more quickly.

Please feel free to ask any and all questions you may have.  Also, we want to hear what's going on with you... 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 2/23/2008 8:58 PM (GMT -7)   

You can definitely up your intake of imodium and if that doesn't help get an Rx of lomitil.  Personally I found that imodium did nothing for me but lomitil worked wonders.  As a last resort you can also get an Rx of codeine.  That will really slow things down but I don't think you will have to resort to that.  Keep a food journal and try to measure your transit times with specific foods.  Eat more of the foods that are slower to travel through your system.  Once you are stablilized you should be able to eat a rich and varied diet.  Experimenting is key, I remember people telling me that applesauce and peanut butter were thickening foods but they both just shot through me.  I did better with rice and oatmeal.  You're going to have to play detective and remember, because of your hydration challenges, to get plenty of salty foods.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 2/23/2008 8:58 PM (GMT -7)   

Oh, and many many many people have said that the Metamucil wafers work much better at thickening than the powder.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/24/2008 7:03 PM (GMT -7)   
I'm, really new at all of this, Thanks so much for your time and advice. It really helps to know that you are there for me.

I have had a terrible hard seven months with four operations in five months. I,m hopeing that there will be on more as I don't know what else they could do for me.

Was at the hospital again for blood test and more IVs and hope I can get a handle on this before it causes more problems down the road.

I do have agood GP that was on call today at the hospital. Hes been there from the start and I'm lucky to have him.

Other than my Doctor I just have my husband. Jan

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/24/2008 7:13 PM (GMT -7)   
Jan

Anytime you have questions or just need to rant, feel free. We all need to be heard and this is a great place where everyone understands! :-)
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/24/2008 7:37 PM (GMT -7)   
Theresa,
I don't really know for sure what I should be eating as know one had really told me as I just have my husband and my Doctor.
I do eat alot of chips, ban. and all the stuff to thicken up the output and it does,t seem to help that much. Guess with all of your help I will get something worked out.

You said something about getting stuff from the health food store for dehydration. What do they have that might help?

It,s been two months today since I had my ileostomy, and it is with me to the day I die. So I guess I neeed to take care of myself.

I was hoping to get a j-pouch, but they told me I have had to much sergery and scar tissue.

I so glad that everything has turned ouy good for you.

Jan

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/24/2008 8:16 PM (GMT -7)   
It does take awhile after surgery before everything settles and it's difficult to figure out which foods work best for you. I've heard about a product called Hydralyte but I think you can only order it online and have never tried it myself. I've also heard about Stamina that you can find at health food stores, but can't find it in Indiana where I live. I sent my husband to a local health food store and he brought back ElectroMIX that is a packet that you add to water. I haven't tried it yet, but wanted to keep it on hand in case it's needed. I would think that anything with electrolytes is what we need when we become dehydrated.

My doctors stressed to me that because I have the loop ileostomy now the food/water comes out much faster than with the first end ileostomy. Trying to eat small meals/snacks throughout the day to keep the water absorbed to something has been a struggle to say the least. And I still have times mostly at night where it's constant liquid and I have to empty several times before bed. When your output is thicker you are retaining the water that you need and everyone is different as to what works for each. For some reason with me, chinese fried rice, bananas, and refried beans work great for me to keep things thicker while potatoes and pastas run right through me.

I hope you can find the foods you need to help you out as everything seems to be trial and error. It's still so soon after your surgery too, you have to be careful of what you eat for the first six weeks and gradually begin to add more foods to your diet. This is still so new for you and I hope you can get this under control quickly. It's certainly hard enough to deal with the emotional stress of the surgery and ostomy that the last thing you need is to have to worry about ending up back in the hospital all the time.
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/25/2008 5:00 PM (GMT -7)   
Peggy,
Ihave been trying everything that you talked about and I think it will take me awhile to see some progress. As I said it has been two months since I had the ileostomy and I guess it takes time for your body to start working again.

I don't go anywhere but to the Dr. or the hospital. My husband goes to the store and to pay bill or what ever else that needs to be done.

How long have you been taking Leperamine? Does your stomach hurt when you take it? Should I be taking it with food?

I stay home because I only have one pair of pants I can ware and I have to empty the bag so much. Will be so glad when things start to change so Bob @ i can go a few places.

How often do you have to empty your bag? Do you go out alot.

Sorry for all the questions. Just have my husband to talk to. It has been hard on both of us.

Jan,

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/25/2008 5:05 PM (GMT -7)   
jan i just started going out really. but i had my surgery january 29th, and when i first started emptying it was pretty often and almost always water. it does get better. sometimes my tummy did get a litle upset w/the imodium, but i felt better taking it with food. i hope u find relief soon.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/25/2008 7:44 PM (GMT -7)   

Hello Jan,

I hope I can answer your questions for you.

Loperamide - I take it first thing in the morning.  The docs told me to take it about 20 minutes before meals so that it has a chance to "work" before the food hits your system.  If you find you have stomach upset, just eat a couple of crackers til you get used to taking it.  I have been taking it since I had my surgery in 1984.  I've tried Lomotil but it made my stomach hurt a lot.  It worked well, but I could not tolerate it.  I have not had any problems with the Imodium tho.

As far as how many times I empty - well, that depends on how much I have eaten.  Most days 4-5 times or so... but I have been eating quite a bit trying to gain weight.  (That's a long story.)  Again, if I decide I really want fried foods, or something that I know will speed up my output, I eat it.  Sometimes I will take the extra Imodium when I know I will be eating those foods.

I go out daily - I work part time now at Indiana University.  I worked full time before and after my ileostomy surgery from 1981 thru 2001.  I only started working part time in 2001 due to family issues.   I don't have a "set" work schedule but I usually work Mon thru Fri, 7 a.m. - 1 or 2 p.m.  Off weekends.  We are also in the middle of building a new home and I have been really busy with that as well.  We are doing a lot of the work ourselves and subbing the rest out.   My ostomy does not dictate where or when I go out.  My husband has a motorcycle and we love taking bike rides too. 

Have you started taking Imodium?  How many and when?  What are you doing with your diet?  What have you been eating?  You know, another thing you could do to expand your diet and include fiber to thicken up things is to introduce some cooked veggies, like carrots, sweet potatoes, butternut squash.  You may want to kind of mash them a bit if you have not tried eating them yet.  Just for the first time to see how well you handle them.  Baked potatoes?   How about hydration?  

Please feel free to ask any quesitons you want.  That's what we are all here for and there are many others on here that have really good hints.

Do you know about the chat room here?  On Tuesday evenings we "try" to get together around 8 p.m.  I haven't been able to attend for a couple of weeks but will try to tomorrow night.  Hope to see you there.

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/26/2008 2:49 PM (GMT -7)   
Anyone out there have pain and swollen over their stony? I have an perm ileostomy that is two months old and it has been that way from the start. Thought it would be better by now. It hurts alot sometimes and it kind of worries me.

I'm so new at all of this that is hard to know what is really going on. The only Doctor I have is my GP and he really trys.

Jan

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/26/2008 10:44 PM (GMT -7)   
Hi Peggy

I did enjoyed the chat room tonight. I have never been in a chat room before, so it is all new to me. I will get better as time goes on and I get use to it. I think I learned alot by just setting here and watching how much you guys enjoyed yourselves. Thanks for telling me about it.

I started taking two loperamide 20 minutes before I ate in the morning and it did seem to help. Took 1 at lunch and one before dinner. I think I need to take 2 three times a day and see how that works.

I eat oatmeal, tst, ban in the morning. San for lunch. Have tried pot. but not baked. Really don't know for sure what to eat as I was in the hospital Nov.23,07 with a blockage that they could get unblocked.

Then Dec.23,07 I was in the hospital again with a blockage that they could't get unblocked, and that is how I ended up with the ileostomy.
Was in the hospital for two weeks. It was all caused by scar tissue from other surgerys. So, like you the ileostomy saved my life and I'm lucky to be here.

I'm trying to drink the right things now.Love coffee and that is a hard one for me to give up. That is the next thing I will work on. Also going to try mix juice with water as you told someone about.

Do you have alot of scar tissue? Have you had any blockages? I really enjoy hereing from you. Thanks for getting back to me.
Jan

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/27/2008 7:39 PM (GMT -7)   

Jan,

It was really nice that you could find your way to the chat room.  Yes, we all seem to have fun there.  Time flies by tho and next thing ya know, I have to go to bed so I can be up at 5:30 a.m.  I think I mentioned that we are building a new home so I imagine I won't be able to appear on here as often as I would like when our weather starts to get better.  We have soooo much to get done.

Anyway, I totally understand about blockages.  I've had several, hospitalized a few times right after my initial surgery but have been able to manage the partial blockages since then at home.  I don't recommend it unless you know your body well enough to know when to give up and see medical assistance tho.  Scar tissue (adhesions) have been a big problem for me as well.  My GI doc and I have a really good "understanding".  I always have some RX's here for pain, muscle relaxers just in case something happens outside of his office hours.  I always tell him "don't make me go to the hospital -- there are Sick people there!"  I'm always fearful of catching a bug on top of having an intestinal issue... the worst.

Coffee was one of the hardest things that I gave up, but I do have to admit that getting off of caffeine made a big difference for me in my morning output especially.  I didn't drink any coffee for about 6 months or better - drank herbal teas.  I am now drinking decaf but I try to be sure to take my Imodium and eat my banana and fruit bar with it (and I make homemade lattes for my morning coffee).   Coffee has no nutritional value whatsoever so I justify drinking it with lots of milk --  Vit D and Calcium, right?!!!  But, I only drink it in the morning.  It is a stimulant and a diruetic (sp) so be careful drinking it throughout the day.  It will flush your system which you do not need.
 
The juice and water thing works well for me cuz it gives good ole H2O some flavor, and some vitamins while cutting back on sugar.  And I have been drinking Cranberry/Cherry juice, which is suppose to be good for you too.  Completely gave up sodas.  I really honestly believe that changing my "drinking" habits helped me gain some weight.
 
Having your previous intestinal problems and blockages would definitely make you hesitant in taking the imodium.  But just tweek on the doseage as you feel comfortable.  Ash mentioned Lomotil.  You might try that as well.  I couldn't tolerate it for long periods due to stomach issues.  But you might ask your doc for a RX and try it if the imodium isn't working as you wish it would. 
 
Hope you continue to have good success in adding some different foods to your diet. 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/28/2008 7:52 PM (GMT -7)   
Sue,
The Vitalyte came today and I have already tried it and tasts good. Started on metamucil wafers today and I will see how they work.

You are all great and I have already learned alot about dos and don'ts when it comes to dealing with an ileostomy.

Thank all of your help.

Jan,

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/2/2008 6:13 PM (GMT -7)   
Sue,

I have been drinking the Vitalyte now for a week and I think it has really helped me. I have felt brtter this past week.
Thanks,Jan,

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 3/2/2008 6:36 PM (GMT -7)   

Jan,

That's great!  You could be a poster child for the Vitalyte company!  I do believe they have the best formulated product on the market for electrolyte replacement.  I am glad it's working for you.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/4/2008 6:10 PM (GMT -7)   
Peggy, can,t get into chat room.

Jan,

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/4/2008 6:34 PM (GMT -7)   
Loged into chat room, but can't get in.

Jan,
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