Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

J-Pouch Diet

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
peji911
New Member
Joined : Jul 2015
Posts : 2
Posted 3/23/2017 6:17 PM (GMT -7)
I am 33 years old and when I was 18, I started feeling the symptoms of Ulcerative Colitis. At the time, I was very fit. I played soccer, football, swam, and ran for my school. However, I started bleeding from my rectum and feeling tired all the time.

By 22, I was on so many drugs I can’t even count – nor do I remember what they’re called, for the most part.

By 24, I was taking oral steroids. My UC was so aggressive that I was taking steroids (I think it’s called Prednisone) three times a year (starting with 8 pills and dropping).

I had my large intestine removed at 29 and when creating a j-pouch, they messed up (their words) because they took too much of the rectum. Further, I have a large abscess that feels like I need to “catch” a BM, or else I get extremely gassy and in extreme pain. This will last for days.

A year after surgery, I had my bag removed. However, my diet is brutal. I can no longer eat health. In fact, if I eat vegetables, especially any greens, I will be in pain for days, to the point that I can’t physically do anything.

Further, I got a major hernia because I lost a lot of muscle and apparently, my frail body couldn’t handle the muscle I already had – plus, obviously, the holes from the surgery.

Anyways, I went from 185lbs with 6% body fat to 235lbs withGod only knows how much body fat. After my surgery, I injured my back because my body couldn’t handle my new weight and now suffer from DDD (Degenerative Disk Disease) meaning that it’s very hard to exercise.

I NEED a proper diet. But how, if my body rejects vegetables and most fruits? Even boiled, I struggle to eat veggies. Is there anything I can do/take for the body to accept veggies? This has led to pouchitis every few months and I am very worried about needing a bag for life.

I have slipped into a huge depression. I have a wife of 3 years (dated for 8) and an almost 2-year-old toddler. The depressing part is that I can’t even play around with him. This makes me realize how big of a failure I am as a father and feel that he would be better without me – if not now, in the future.

If I cannot get my diet in check, I think that I might take my life. I can’t live in pain for much longer. I have no idea what to do. It’s devastating circle – I can’t eat properly so I gain weight; because of my weight, I cannot exercise without being in pain; because of lack of exercise, I am getting bigger which means the pain is greater, etc.

Has anyone gone through this? Is there a diet for this?

I don’t know what to do anymore and feel that I will be biting steel if I cannot get this figured out. The pain is too great. I know it’s selfish but having a father/husband constantly being a vegetable is worse than having one 6 feet under.

Any help would be great. Please.
profile picture
UC long haul trucker
New Member
Joined : Feb 2016
Posts : 4
Posted 3/23/2017 7:28 PM (GMT -7)
I'm 26. Started bleeding at 18 as well same type of story as you. Haven't hit 29 yet so I don't know if I'll take the same turn but another 2 week hospital stay is always hanging over my head. My first flare up the doctors almost pulled out my colon on the spot but I got to keep it for the time being as long as remicade keeps it in remission.

From what I've read the surgery increases the likelihood of suicide by 8x. I'd say to definitely talk to your doctor about your suicidal thoughts because in my view, I've had them and talked to my general practitioner, it's just another side effect of the disease.

As far as not being able to eat anything healthy I put on 90 pounds and went from 165 to 255 because I couldn't do whole grains, nuts, veg, fruit or any of it. Which has rwally hit me hard because im 26 and im normally very athletic but i cant explain to everyone i meet that im fat because of a medical condition. It's depressing as all hell. I'm still off all that stuff. It's just all the worst stuff now. My diet is about 90% starch. It's awful. I'm down to 225 now and I'm not sure if I'm still losing or plateauing but I just started calorie counting in january and cut out 25% of my calories. I think there's 3500 calories in a pound of fat so if you can reduce that much a week you'll lose 52lbs in a year. I figure that's 500 less a day which I can do alright.

Working out I've just been doing a lot with my arms focusing on biceps and triceps. It's weird going from being a gym rat to feeling like I'm all washed up at 26 years old because of this illness. But I'm taking my life back.

The pain is the one thing I can't deal with and I commiserate 100%. I didn't sleep for 3 days on my last flare up until I got to a hospital and they had me on dilaudid Q3 for a week. Once a new nurse saw I was sleeping and didn't give me my dose and I had a nightmare I was being stabbed and I woke up with my jaw locked shut from my pain and I was shaking it hurt so bad. I'm with you on the pain. I don't know how I'm going to mentally cope with the reality that this pain is just out there somewhere waiting for me to have another flare up. It takes away all my coping mechanisms. I can't sleep, I can't eat, I can't get caffeine, I can't just go to work, I can't even think when it's going on.

Yeah, I'd say talk to your doctor about the suicidal thoughts because they're not uncommon they're a product of the disease and need to be treated with the rest of it. Calorie count since healthy food is not an option. 500 less a day will shave 50lbs in a year. And focus on arms for definition. We can't get strong because the core is too painful to work but at least we can nurse some glamour muscles a little.

Hope it helped. Now 29's going to be my new scary number. It sucks to be so young on this forum haha
profile picture
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17864
Posted 3/23/2017 9:13 PM (GMT -7)
i have a jpouch and I eat whatever i want. I haven't had any issue with weight gain - actually I am back to my preUC body, which is a dream for me... but your situation with surgical issues would usually make someone more prone to losing weight, due to faster transit, than gaining weight. It seems weird to say they "took too much rectum" when the goal is to take just about all of it. Seems like you need to consult a surgeon to find out what's going on and also potentially a GI to figure out why you're having the problems you're having. if you can't eat certain things due to symptoms, perhaps you're dealing with something else that needs treatment. I would also want to do thorough blood tests to see it something is going on that is causing weight gain. I have been depressed with UC and perhaps times with my jpouch. Definitely to a lesser extent since getting the pouch, but there were times when i felt defeated over the years. Living with chronic illness is tough. You should see someone for the depression.

where exactly is the pain? Is it in the intestines or is it gas? What kind of pain? Maybe it's due to adhesions or blockage. Needs investigation for sure.
profile picture
Fletch10
Regular Member
Joined : Feb 2017
Posts : 276
Posted 3/23/2017 9:28 PM (GMT -7)
Just a note to hang in there. I'm newly diagnosed so can't offer the support and wisdom that others can but spent a long time in tears today because we had to cancel the honeymoon we've spent three years waiting to take - I'm waiting to start my remicade loading doses, still flaring, and we can't be ready to leave in ten days. I understand feeling guilty and inadequate. BUT...Whatever you have going on with your weight, your illness - speaking as a wife, your wife is so much happier with you than without, and your son too. Get to the doc asap and talk about your depression. Get another surgeon and GI to look at you and hopefully find new solutions. You are so much better as a part of your family's life than without. Take it from someone who lost her dad 13 years ago, pretty young, and has missed him for every single decision and big moment, small moment, and holiday there has been. He was terribly sick for years but I'd give anything for another day to talk to him. Stay with your family and get another look from your docs.
profile picture
suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 3/24/2017 7:22 AM (GMT -7)
I listened to a dietitian speak at UCLA, she specializes in jpouches and those with UC/Crohn's. She might be able to help you and will do Skype sessions for a fee. If you are willing to pay a professional to get some eating advice, I think she would be an excellent person to work with. She is smart, knowledgeable, and works only with people like us. Let me know if you want her contact information.

Sue
✚ New Topic ✚ Reply


More On Ulcerative Colitis

November Is Crohn's & Colitis Awareness Month

November Is Crohn's & Colitis Awareness Month

8 Foods To Avoid With Ulcerative Colitis

8 Foods To Avoid With Ulcerative Colitis


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2022 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.