Periods of no appetite: How do you cope?

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freedancer

Do any of you go through periods where you just aren't hungry? Sometimes the thought of having to cook or even eat what I cook just turns my stomach. There are also times when my husband cooks and uses grease or cooks things with grease, I just feel ill and cannot stand the smell. I am just curious if any of you go through this and how you have dealt with it. Thanks, Pamela

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Past Member

Yes, I think everyone realizes when it comes out the front and not the back, it's time to slow things down. The feeling came on me the day the pouch arrived. You'd be surprised, people in third world countries eat once a day and work all day. Live thin, work hard. We eat up to three times a day. Poop a lot. I eat very small but drink veg juice granola keeps stool less sticky, easier to clean. Go without a pouch a lot, makes it easier and faster, less hand movements. My app is slow, but the one bite appetite still wins once I make a meal. We're the same, Jerz.

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mild_mannered_super_hero

I wish, I am always hungry! Did you have chemo? Back when I had chemo, I had very little appetite.

Past Member

Very rarely, I'm a comfort eater, so I can eat non-stop. The rare occasions I don't feel like eating, family and friends say, "OMG, you are ill."

Bestcaregiver


I take care of a 98-year-old woman that eats all day nonstop and has a colostomy. Please help, she's eating herself out of house and home.

 
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paulaAZ

I actually have more of an appetite now that my UC/Crohn's does not affect me in such a negative way -- mainly because I have neither any longer since no total proctocolectomy. I have to watch it because there are many things I could not eat before and can now, and thus I have gained some weight -- so getting those extra pounds off and being I am about 3 years post-surgery, I am doing more exercising now.

GraphX12


+1 on that ^ Paula! But, since I've had 2 hernia repairs and needing a 3rd, I can't exercise anymore. :-(

paulaAZ


GraphX12 ... Right now I am just doing some cardio. My issue is that I am retired and although still work at home with my own business, too convenient to eat more than I should. But I am helping that situation out by going back to work on 5/7 ... more for people contact than anything. I love being retired and enjoy my own business (online legal) ... but ready to get back to interaction with people. Since my ileostomy gives me no issues, I am good to go. And not being able to eat any time I want will help immensely I am sure! LOL

GraphX12

I hear you on the people contact, Paula! I had my first surgery (ileo) 5 years ago today (lost my job over it), and it seems just when I'm starting to feel a little better, wham, another surgery. I miss the interaction with coworkers.

paulaAZ

Wow, GraphX12 -- Happy belated stomaversity :) I had mine on November 10, 2015. I had a stricture in the descending colon that was giving me all kinds of issues. The GI was never able to traverse it, but the colorectal surgeon was able to in 2014, but in 2015 even he could not get through during my colonoscopy. So, given that that prohibited him from being able to see if there was anything bad going on in or behind that stricture, I had the total proctocolectomy in November. I was fortunate in that I was able to plan my surgery ... in fact, I had the colonoscopy in May and did not have the surgery until November. My mantra after that has been "I didn't realize how bad I felt until I felt good again!!!".

I hate that you lost your job over having a medical condition -- that just is not fair! I retired in 2012 and that decision was partly because of the UC/Crohn's, but it was also time to retire ... no regrets at all ... and looking forward to moving on. Who knows ... you may find something (if you want to) that is just a perfect fit for you! Keep in touch and let me know ... are you scheduling a third hernia surgery or no? Will they have to relocate your stoma?

Paula

GraphX12

Glad you are doing well, Paula!

My story: Diagnosed with ulcerative colitis in 1992. Did very well for the last 10 years – no meds/no nothing. Then had my routine colonoscopy in Dec. 2012 at a new-to-me clinic. Within 3 days, I got DESPERATELY sick. The GI doc said it was a flare-up. Ummm...after 20 years of UC, I certainly knew what a flare-up was, and this was NO flare-up! Long story short, the doc continually tried various med combinations – I continually told him this is no flare-up and that something else is wrong - have never felt so sick. Lost 50 lbs. in 4 weeks until another doc at the clinic said, "This guy sounds like he's got C-diff!" Tested positive, tried everything under the sun shy of fecal transplant to rid me of C-diff, realized I was spinning my wheels with this so-called GI doc, requested a referral to U. of Wis. Madison. Waited weeks for an appointment at U. of Wis. and kept calling GI doc as to why it was taking so long. Every reply was, "We will call them today to make sure you get scheduled."

In the meantime, I kept getting sicker. So I called the Mayo Clinic, and they got me in right away. My wife bedding me down in the back of her car since I was too sick to sit up. 4 days of testing, and they told me my only option was a total proctocolectomy with end ileostomy – the C-diff totally destroyed everything. The director of the Mayo Clinic GI dept. told me this was as bad a case as he has seen, and if I didn't have surgery immediately, I would die. Went home Fri., came back on Sun., had surgery on Mon.

I am convinced I contracted the C-diff from unclean equipment during my colonoscopy.

To make matters worse, two weeks post-op on a Mon., I get a call from U. of Wis. to schedule an appointment. I said, "Seriously?!!! I've already had surgery!" Their reply was, "We just got the referral from your dr. on Friday."

In Dec. of 2014, 8 inches of my small bowel had pushed through my parastomal hernia and had gotten restricted, requiring emergency surgery. No mesh was used.

March of 2017, had the hernia repaired again (at Mayo Clinic this time) using mesh. Very hard recovery – the many sutures required for the mesh have been really painful. No stoma relocation.

Now, hernia back again only larger, am in pain – I'm sure part of this is due to scarred tissue, stoma prolapsed to 4 inches. Can't go through another surgery. So for the time being, I'm just living with it.

paulaAZ

Wow, GraphX12 ... you have really been through it. Sounds like you have a really good support system though, and that means so much! My youngest daughter (37 years old) and I actually own a home together and she has really been a great help to me. I was able to telecommute on her job for my first week home and that was extremely beneficial since we have a two-story home and I have the whole upstairs as my "inner sanctum" as we call it LOL. But seriously, she was great. My oldest daughter is a widow and has my two grandsons and lives about a 45-minute drive from me, so it would not have been easy for her at all -- so it all worked out.

I also had my surgery at Mayo ... but the one here in Phoenix. I went in on a Tuesday morning at 5:30, surgery scheduled at 7:30, came home Friday morning. It did not even require home healthcare as I had watched literally hundreds of YouTube videos on ostomy supplies and changing your appliances, etc. In fact, when they changed my appliance in the hospital I basically did it and the WOCN pretty much just supervised.

I am really sorry to hear everything you have been through. Hopefully, things will improve. I am not going to do anything other than cardio until I get a hernia belt to exercise with and still will not be too much in the way of weights as far as the amount of weight. With going back to work, I may just stick to the elliptical and go with that. I think the change in my eating habits will help more than anything!

Just hang in there. Write when you get a chance and let me know how things are going.

Paula

GraphX12

Hey Paula, so glad you have family around. We have none. Our daughter (only child) lives 4 states away :-(. Really miss her.

Sounds like your pre-surgery homework paid off. I'm sure it helped in your transition. I literally knew nothing and there are no ostomy nurses in our area. So I have had to learn at the school of hard knocks :-). Thank goodness I found this forum. The good people here with their wealth of knowledge have been priceless!

Since you live in AZ you may want to look into the "cooler" hernia belts. They are made out of a more "breathable" fabric. From experience these things can get really warm and uncomfortable. Also, because of the size of my hernia I had to opt for a really wide band which tends to restrict my breathing. Just something to consider.

Thanks for the well wishes! I'll be fine. As soon as I start feeling down I'm reminded of all the poor children fighting cancer I saw while at the Mayo Clinic. My heart goes out to them!

paulaAZ

Hi there Graph ... My oldest daughter, son-in-law, and grandsons did live in Ohio until 2011 when my son-in-law was killed in an auto accident. Jen and the boys moved back down here as all the family lives here. They had moved to Ohio so Jacob (my oldest grandson) could attend a great school for the deaf up there. But he is doing fine here and in special needs classes in a regular school.

I remember when I first moved to Arizona and Jennifer stayed in Tennessee ... it was hard, but eventually, she moved out here, too. Of course, Suzanne (the youngest) was still in high school so she moved with me. But I am sure you guys visit as much as you can.

I don't know if you have ever gone on the www.inspire.com website, but they have some good advice on the ostomy forum. I found that site before I found this one, so that is where I got a lot of information. One thing I learned that was great was that good old Lotrimin foot powder is great if you have any yeast-type infection on the skin under the wafer. Heck, I use that exclusively now and just crust over that. Go figure, huh?

Anyway, enough from me. Talk to you soon.

Paula

awilli50

Thanks for your insights. It sure feels nice to have someone so close by in the same state who is having issues. A lot of the outreach programs in Maryland, I can't seem to find where they don't exist.

paulaAZ


You probably have already done this, but just in case. Go to the United Ostomy Associations of America website, www.ostomy.org and under "Support" you will see "Support Group Finder" ... search your city or zip code or however you want and find the support groups there.

Hope this helps.

Paula

freedancer

No, I did not have chemo, just two surgeries. One for the emergency and another because the emergency fix got strictured.

freedancer

What does a hernia feel like?

SugarAvenue

I feel like this. Some days, like today, it is 11pm before I finally figure out that I have to eat something. Then I usually just nuke a Lean Cuisine. If I had to fix it and see it on those days, I wouldn't be able to eat it when I finished. The odd thing is I eat about 1/4 of what I used to eat before my surgery 9 years ago, but I have been steadily gaining weight on one meal a day, a diet meal.

But yes, yes, the idea of heavy food or greasy food now just makes me queasy and puts me off. When I weighed in at 110, I ate like a horse. Now I barely eat and get fatter and fatter. Not fluid since I am on diuretics for Pulmonary Arterial Hypertension.

Sarah2

Having chemo now, awful taste in mouth, makes food taste like metal. Sweets are fine tasting though, yipee, not really. Mostly I am always hungry eating lots and not gaining weight.

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