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Weight loss and weight gain after ostomy surgery  

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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 861
05/01/2018 1:28 pm  

I'm curious to know if gaining or losing weight has been a challenge for you AFTER your surgery.

I've had emails from people who have had the opposite problem and I want to learn how your experience has been.

For me, I was underweight when I had my surgery, so I did gain weight after that - too much - this was totally because I eat a lot of food, especially at night, and I'm working on consuming more reasonable amounts this year! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
05/01/2018 2:16 pm  

Hi All, On the day I got out of hospital I was 7 stone, my eating was slow at the start as my appetite took a while to return, but when it did the weight started to go on around 3 months after I was 9 stone and after 6 months was at my usual weight of 12. But it wouldn,t stop after a few years I found myself at 15 stone and didn,t like it. More careful and healthy eating has returned me to my usual self but I have to be careful. Big part of my problem was eating at night. I was up at the loo and instead of going back to bed I was in the bread bin and biscuit cupboard. I never used to gain weight no matter what I eat but I put it down to a mix of being healthier and getting old.

ileostomy 31st August 1994 for Crohns


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Tony H
(@tony-h)
Estimable Member
Joined:10 months  ago
Posts: 131
05/01/2018 3:06 pm  

My normal weight before my last bad flare was about 180 lbs , my weight after my total colectomy and after recovering from c diff was 126 lbs , 

the food in hospital was really bad so that did not help , I asked for scrambled egg one day and what I got resembled dried egg cooked in motor oil , 

Anyway my dietitian gave me some pointers which was basically the opposite of normal healthy eating with a few exceptions like mushrooms , 

I had normal meat and veg every day, soups , sandwiches  plus a pizza nearly every second day , I also had lots of snack food like bite size mars  , snickers etc,

at the start it was hard because my appetite was poor but I struggled on HAVING to eat all the nice food and snacks ,

the result was that I quickly gained back my weight plus another 14lbs  which I will try to reduce when the weather gets a little better  .


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Bago
 Bago
(@bago)
Eminent Member
Joined:7 months  ago
Posts: 24
05/01/2018 3:35 pm  

My weight before UC was about 180 pounds. Two months later 155.  After Ileostomy surgery 145.  Two to three months later back to 180 pounds.  A year later 185... diet and now back to 175. (Christmas and New Years got me up to 180 temporarily.)

Bill
Ulcerative Colitis... Ileostomy June 2016


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Marcie
(@shulmjs)
Noble Member
Joined:3 months  ago
Posts: 1013
05/01/2018 5:35 pm  

Hi Eric, I was 165 pounds when I got sick, came home at 136 pounds. 2014, Dehydration... as u know.. 2 weeks ago 110 pounds, 2017-I keep going down and I eat everything under the sun -except fish-hate it- Then I ate all the pie's, cakes etc. -just to see  how and what I am absorbing and why?  Off that kick now-NOT  HEALTHY-now Jan. 5th 116 pounds. (winter clothes?) Seeing a special GI dietatrion Monday-- (let you know about how that goes and results-for you special blog on this as we spoke of) Upper GI wants me to get on Gattex injections.. (lowered the price to $300,000 per year) Cant go there.. ($$$ & don't like the info) But I am going to see this special Dr. and get the whats whats Via: his mouth.. And my questions.. Google this Gattex.. for your studies.. Eric...  It is a new drug for short bowel..  I prefer to handle this myself and get out of the infusions the best as I can.. I THINK that I was so sick and my body just died... Which it did  Just taking a few years to get back on my feet. Figured as I have a size 10 shoe size I would be rather stable by now huh ??? :-)

As I and many others suffer from dehydration, I think my studies will help others. There must be a different way to house ourselves with such-just a different angle of an ostomate..  So, I will be a ginnie pig for this and you can be the ginnie pig with the waffers etc. :-) We r all different but gosh !! in my angle of such, there has to be a better way!! Your correct, natural fruits and such have much water in them.. I do this more now... Every little drip  helps.. :-)

For anyone in this dehydration, do as I did, Get tested for your heart, and lungs.  As dehydration makes your heart pump faster and your breathing is heavy-- find out if YOU have any of these issues.. My heart tests proved perfect. but the  lung Dr.? I have COPD.. so, now I can make note of my breathing and knowing that it is MOSTLY COPD.. and I have a breathilazer-sp- I do each morning.. Helps-- I suggest this as YOU can as I have-now know that all systems are NOT JUST dehydration.. I just had to go to the Dr, and find out for myself.. Got to think a lot and go for it or demand it.. Get to know your body--and understand it ......... Best, Marcie...

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 861
05/01/2018 10:06 pm  
Thanks for sharing your experiences, guys - let's try to keep it on-topic so others can learn and share their own experience with gaining/losing weight after surgery.
Posted by: Marcie

Upper GI wants me to get on Gattex injections.. 

Funny you should mention Gattex - I have a brochure for it right in front of me that I picked up when I was at AIBD in Orlando! I had picked up the brochure with the intention of researching about it and posting information for those who have short bowel, but I haven't had the time to do that yet.

I don't want this thread to go off topic, but if you do go on Gattex, I'd love for you to post a new topic sharing your experiences with it. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
Noble Member
Joined:3 months  ago
Posts: 1013
05/01/2018 10:16 pm  

THat I will do--When or if I do it.. Would also like your knowledge of .  What is that anyways?  ABID? from what I understand so far is what it GATTEX is used for-SBS-I don't have SBS.. but seems like my body is acting as such. 

What should we out this under? treatments for dehydration? treatments for SBS?  Gattex is a treatment.  But still want to know your personal out put--even if it is p.m. -)

 

John, what is a stone in weight wise?  You have me more confused than before and I am not having a good day.. :-) 

 

Tony were u dehydrated? 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
08/01/2018 6:23 pm  

I have gained a stone in 3 months since surgery after losing two stone beforehand very quickly due to a UC flare (went from 12 st 5 lb to 10st 5lb) and am now at 11st 5lb, which is just bordering on the overweight category for me. I'd like to get back to about 10st ish, and now that I've been cleared to exercise (and Christmas is over!) I'm sure that will be achievable for me.


 


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john68
(@john68)
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Joined:4 months  ago
Posts: 698
08/01/2018 6:40 pm  

Hi Michelle, that's a healthy sign, as you said in an earlier post about getting back to running that will help!

ileostomy 31st August 1994 for Crohns


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nancyab
(@nancyab)
Active Member
Joined:9 months  ago
Posts: 13
10/01/2018 8:05 pm  

Before my surgery I was at 116 lbs. I went down to 101 lbs - the food at Parkway Pavilion where I was sent for rehab was horrible. They put me on a pill to increase my appetite. Once I got home I went up to 106 and stayed there for about three months. I was happy to be at that weight and wanted to stay there. Unfortunately, I started to gain and can't seem to stop. Right now I'm up to 130 and going to WeightWatchers, which isn't helping. With the weather the way it's been, I hadn't been able to do my morning walk with my dog - usually about a mile, and then a somewhat shorter one later in the day. I'm starting tomorrow to see if I can't get back on my walking schedule and maybe that will help with the weight situation. 


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Marcie
(@shulmjs)
Noble Member
Joined:3 months  ago
Posts: 1013
10/01/2018 8:11 pm  

Michelle, and John,  What is a stone in weight???????? We use "pounds" and ounces..here in USA.. 

Depending your age, The younger ones get back into running.. We have one guy that runs all the time, and made it into the papers here in Ct.  And shows off his pouch.. :-)  Also, along the shore line, there is a man in his 50's that climbs all over his sail boat.. I am sure that he uses proper belts.. Nothing stops them.. Good luck on getting back into your sports. Ahhh youth.................... Miss it................. Enjoy life!!!!!!!!!!!!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Michelle
(@michelle)
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Joined:2 months  ago
Posts: 13
11/01/2018 8:51 am  

Hi Marcie!

 

A stone is 14lb :)


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VeganOstomy
(@veganostomy)
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Joined:4 years  ago
Posts: 861
11/01/2018 9:41 am  
Posted by: nancyab

Unfortunately, I started to gain and can't seem to stop. Right now I'm up to 130 and going to WeightWatchers, which isn't helping.

Hi Nancy, are you on any medication that might cause your metabolism to go out of whack? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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nancyab
(@nancyab)
Active Member
Joined:9 months  ago
Posts: 13
11/01/2018 9:50 am  

Yes, prednisone, but I've been on it since 1995 due to Lyme Disease and non-treatable sero-negative arthritis and was able to maintain a healthy weight since I was an avid cyclist and skier. I'm also on synthroid for an underactive thyroid. 


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Susan
(@susan)
New Member
Joined:7 months  ago
Posts: 2
14/01/2018 4:06 pm  

I cannot stop gaining weight and Feb 6 Wilma be a year. I know how to lose weight without the Ileostomy bit I di not know what to do. I am short waisted so I have 5 layers at my waist, I SWEAT something terrible, I need to eat ticketing foods because my output is liquid & I take Metamucil 2x a fat pet my Surgeon.

i feel alone and estranged. I have no friends, I have no help and I do not know how to lose weight and I am frustrated.

i want to the local UOAGC support group and they have an agenda and the people are in Cliques. No one talks to me., I hate my life. I cannot do what I want and again, I need help and have no help or support. (My immediate Family, my brother, ca never help me) 

i want to go live in a Nursing Home but my diet would not be healthy and I would be in a room with 2 other people and I need my own bathroom.

i cannot handle this and I just pray not to wake up e try day. 


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 861
14/01/2018 4:25 pm  

Hi Susan,

I'm sorry to hear that you're struggling and maybe we can collectively offer some tips.

You said you knew how to lose weight before your ostomy - what's changed that your diet or lifestyle that makes it difficult now?

I've been keeping a food diary for myself, as well as started an exercise routine and it's amazing how many extra calories I was eating before without really even realizing it. But the exercise piece I find to be most difficult because the effort needed to burn a mouthful of calories is a lot!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
14/01/2018 4:33 pm  

Hi Susan, As Eric has said weight loss is still along the same lines, Now that your in better health the food is doing what it should. Smaller portions, if possible a walk. Solve one issue at a time.

ileostomy 31st August 1994 for Crohns


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Marcie
(@shulmjs)
Noble Member
Joined:3 months  ago
Posts: 1013
14/01/2018 5:02 pm  

Susan, IF u don't mind, how old are you?  Then maybe some of us can help you along.. It makes a difference ... Eric is correct, Have u seen his diet tips and his change of eating habits?  I am not a vegan.. but I fund that many of his chosen foods carry liquids that I need and never thought of.. This within itself can help you feel full.. That is if your eating out of depression.. which I see you  in a good one..  We all get depressed honey-- No matter what size we are.. And our size is not what makes friends. YES, I have found people treat me differently--but that is THEIR problem.. not mine.. Try another group--and please talk with your Doctor of this depression!!  I was in a bad way and decided that I needed anti-depressants.. Start low and try to work with them.. IF needed work up -- I have done this and was able to make my adjustments of my surgery-- Along with this group I made a full recovery.. But at my age 68- I am staying on my anti-depressants.. :-)  I still go down.. It has been about 3 1/2 years for me..  But please talk with your Dr.!! A healthy mind is a healthy body.. Your still new after this surgery and it does something to us.. An adjustment that we thought we could handle.. That is first on your list.. And as your doing this, your learning with us and you just may loose some weight with out trying.. You need us and we will  need you too... So hang in there and join us in the lounge--we have fun in there and let your personality run.. 

You may hate me, but I am trying to gain weight!!  my health is not in a perfect area either..  You don't need a nursing home yet my friend.. You need us!! 

So, tell us about yourself.. Check us out at the members-see what we are about early on.. As I have, you too will come a long way baby!! We just have to even our weight out huh?  Read Eric's, and learn about the products.. Understanding yourself on this area is being secure.. 

Now, put a smile on your face, have a cup of tea, put your feet up and plan your day for tomorrow..  The library is always nice.. Best to you. Marcie.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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john68
(@john68)
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Joined:4 months  ago
Posts: 698
14/01/2018 5:22 pm  

That's sound advice Marcie!! only thing if I may say work with the other advice before the tablets.

ileostomy 31st August 1994 for Crohns


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Marcie
(@shulmjs)
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Joined:3 months  ago
Posts: 1013
14/01/2018 5:37 pm  

Susan, I felt the same way-didn't want to wake up--but I did... :-(  And u will also--like it or not.. No, I cant do the same things I used to either...  I am a very active person--hyper - I am perfectionst--I had to learn how to walk.. I didn't even know that I was sick-- But boy oh boy was I sick!! I worked so hard to get where I am-and happy that I am here.. I thought that I was discusting, I was shocked.. but I am NOT !! My mind is beautiful-that is what counts..  The worst word I have received during my recovery and still recoverying--is "TIME" In everything : "TIME" This includes weight loss, weight gain, knowledge.  Try for a small loss of weight = 3 pounds and hold.. then another 3 pounds.. hold.. This adds up in --yes that word again.. "TIME" --have a bit of fun--name your stoma..  I will interduce you to mine.. Her name is Nellie--Nellie sings during grace..  She is moody--If I am on my way out?  I just tell my husband ( by the way hates hospitals, even a very little bit of blood) I just say-"woops--got to give Nellie a  new dress.. :-) She doesn't like the one I put on her" :-) I am on my own with Nellie--If something happens to me and I can't take care of her properly, A nursing home for me..  I have been in a few of them for recoveries.. So, getting my out look ready-- I am and WILL be number one!! I will and have always had a private room with bath..  I demand this!! YEs the food is pretty bad, and such small portions.. If your in the USA, and on Medicare , it doesn't make a difference where you are.. Make it work for yourself.. So Lets try 3 pounds loss for the next 6 weeks..??  And I will try to catch them over here in Ct. USA.. :-) Remember that word.. TIME........ IT works in the long run for everything.. Just to long huh?  

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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