Introduction:
I am 57yrs old. My excercise used to consist of fast walking, & aerobics. Have three grown boys with three beautiful grandchildren. My husband and I like to take small trips when we can afford them.
Some more about me:
I like to help others, especially the elderly whenever I have free time. And I love making time for my grandchildren. During the fall/winter I cook and bake for the neighbors and co-worker. Come summer, everyone knows that I hit the beaches whenever possible. That is my favorite quiet place.
Symptoms:
If I something bad on one day, the next day I will have the diarrhea with blood in the am. After that I am fine the rest of the day.
Am I the Only One that is Fat from UC?
Was diagnosed with Ulcerative Colitis in Jan. 2013 after losing 30lbs in one month. I must say I did look pretty good then. They immediately put me on asacol pills. After three weeks on them I started have symptoms like gallbladder attacks. Tests revealed that I had pancreatis from the pills. Took me off them and went on Budeserone for six weeks. By the fourth week ulcerative colitis came back. Told they weren’t strong enough. So they wanted me on a very low fat diet to help the pancreas.
Had more blood work done which showed the pancreas was fine. Went on Predisone next. It worked great but I blew up and gained 50lbs. Would have trouble walking and breathing. Came off those and I now notice that my body has more aches and pains, like in my ankles and hands.
Went on to Imuran. Second week into them and was rushed in for gallbladder attack. Test showed nothing wrong with the gallbladder. Took me off the Imuran and was fine. Dr. told me I need to lose at least 20 pounds because of my Liver enzymes are high again. Two weeks later ulcers came back but not as strong. Have been on nothing for the last 4 months and am having trouble losing the weight. I find it very hard to walk fast because my whole body has started aching. I have however been taking Probiotics (20 billions active ingredients). I am no doctor but I do wonder if taking these has slow down my symptoms. And I also noticed that when I eat something too fatty my liver or in that area gets very bloaty with pain. If I eat something not good for you the day before, then the next day I will have the diarrhea with blood in the stools in the morning. After that I am fine the rest of the day.
Anyone have any suggestions or help besides going to the doctors?
written by Linda L
submitted in the colitis venting area
Linda,
I don’t think you’re alone by any means in terms of gaining weight after your UC diagnosis and subsequent runs with medications especially prednisone. That has been known to cause weight gain in many a UC’ers.
If you are interested in checking out some posts with regards to meals I prepare, I’ve posted several of them here on this link: https://ihaveuc.com/category/colitis-stories/good-meals-for-ulcerative-colitis/
And those may give you some ideas, and due to the low carb basis on most of them, it is probably going to have some lower calorie amounts compared to foods that are rich in carbs.
Thanks for sharing,
-Adam
Best,
Adam
Thank you Adam for your quick response. I will look into this website.
Hi Linda,
I am struggling with the weight gain too. Not even on prednisone not since 2008.
Not even during major flares.
but at least it forces me to exercise even though I do suffer from pain in my feet, my shoulder and back… if it gets too bad I am taking Tylenol and I am getting cortison shots in my shoulder.
Regarding probiotic, I am taking one with 75million….. you might want to increase.
best of luck,
Sabine
meant to state:
1. I have not taken prednisone since 2008 BUT I am still struggling with the weight gain
2. I am not loosing weight during flares
Thanks, I will increase my probiotics
You are not the only one putting on weight. I have put on almost 100 pounds. I was on steroids for 6 months, then was put in asacol and imuran. 4 years later I am at 239 pounds. I have been slowly lowering my imuran down to one pill and I have started loosing weight. 15 lbs so far. In 2 months I will be on NO meds for ulcerative colitis. So far I have had no issues with my belly. I have had pancreatitis and my gall bladder removed due to liver issues. I almost died because my “dr” wasn’t paying attention to my blood work. Now I am on a very low fat diet. With only healthy oils in my diet. Try to use extra virgin olive oil and extra virgin coconut oil. It reLly helps with the weight and doesn’t bother your liver and pancreas! Good luck!
Hey Linda,
Well I’ve been living with UC for 14+ years now and my weight has been up and down more times than a Chippendale’s thong!
Best thing for weight loss, even when on prednisone and other meds that I’ve found is cutting out sugars. I’m not only talking about white table sugar, sweetners (artificial or so called natural), also syrups, sugars added to processed foods and of course starchy foods like breads and pasta.
We do not need added sugars in our diets at all. It will also help your liver as its one less toxin for it to worry about.
Being constipated can also lead to weight gain. Make sure to drink enough water.
I’m currently experiencing some bleeding with BM in morning. Then I’m fine for rest of day. I’m tapering off the prednisone (7 more weeks to go!). This flare I have lost a great deal of weight, all the weight I put on from last flare/course of steroids. Just finished course of metronidazole and Cipro which seemed to help. I have some new probiotics to try so I’m pleased to hear you feel they’ve helped you.
Happy healthy thoughts to you all xxx
Hi Linda,
Wow, yet one more story about just how the UC drugs can screw up our bodies! If this is not a testimonial for not taking meds to treat UC, I don’t know what is!
Meds either never work for very long, or do not work at all for treating and managing UC. Besides that, they can have very bad side effects, both short and long term. It’s almost criminal…
Probiotics and L-glutamine are keeping me in remission and I feel like a normal person again. I’ll never take meds for UC again. I love how you asked, does anyone have any advice other than going to a doctor?? Exactly! How sad is it that doctors don’t know enough about UC to do anything for us at all!
Thank you for your post. Unfortunately, what has happened to you is ALL too common.
Hi Linda
I was diagnosed in 2011 and in the last 12 months I’ve gained a lot of weight and I haven’t been on prednisone either, but I’m worried as my GI doc is thinking this might be the only option for me at the moment and I’m terrified I’ll gain even more. Like yourself, I used to be extremely active and I’m 100% certain that the UC has contributed massively (scuse the pun) to the fatigue I experience on a daily basis that has zapped me of my usual energy. I have to say I am surprised you haven’t been on any medication given your symptoms! Have you tried sulfasalazine? Not everyone can handle it, when I first went on it I got bad headaches but after a couple of weeks, they subsided and mostly the medication has kept me blood free. It’s only in the last month or so that I’ve started having a little bit of bleeding again. I’ve had my dose increased until I get my colonoscopy on Monday.
The weight is frustrating. It’s an issue most people even without UC don’t enjoy but I think it’s especially hard when you’re not usually a couch potato and you WANT to exercise but struggle.
Good luck with your journey. I’m totally with you! :)
Hi Linda,
You are definitely not the only one to have gained weight due to UC. I had always been slim, up until December last year when I was put on steriods for 3 months. I have been off them since the beginning of March (this year) but still continue to take Asacol. My weight gain has become very noticable, I had even cut down dramatically on eating and joined a gym but I still felt bloated so I gave up. Each day that passes I critise the way I look and get angry with myself for looking the way I do. At the same time I have to realise that I have UC and apparently this is one of the down sides that happens to alot of us. I’m going to look at Adams eating plan and give that a go, it may work for you too, but please don’t feel like you’re the only one going through what you’re going through because I can assure you there are plenty of others in the same boat as us.
Thanks for making not feel alone. I have to say that I got so down that the drs. have put me on Citalopram, (a mild anti depressant). I also am looking into Adams book. Good luck with your uc.
Linda, you are definitely not alone! In the early years with my UC I was losing weight and looking great (but feeling horrible). Then they put me on prednisone and I swear every time I touch that drug I gain 5kgs (10 pounds) and have a really hard time losing it. I must have put on at least 20kg over the last few years.
For the first time I’m on pred and actually losing weight, I’ve got about 5kg to go until I hit my “normal” weight. I’m following the SCD diet and I think cutting out all sugars and grains has definitely helped with the weight loss. My stomach is flatter than it’s been in years. I even have the energy to hit the gym in the mornings.
Maybe there’s something low impact you can do that will be easier on your joints? Stationery bike or swimming maybe? Although when you’re feeling exhausted there’s no point exercising and making yourself feel worse.
Cheers,
mj
Two words…Wheat Grass fresh or frozen…I didn’t believe it but had nothing to loose I lost the UC totally inactive even the CDC admits it works! look up the research get angry that we were not advised and then get your self some wheat grass daily. Please followup and post so we can help others…gotta take it daily fresh or frozen.
I’ve had UC since November of 2000. I had the yo-yo weight loss, weight gain thing for many of those years. I have been in a mild to sevear flare for almost the entire time. I’ve taken just about every drug available to date. Sulfasalzine, asocal, some other stuff that worked so badly with me I was on it too short of a time to remember what it is and 6-MP, and now Humira. I did take prednisone several times through this journey to eventually reach the point of it just not working for me any more.
About 4 years ago, a couple of years after turning 30, I noticed that not only had I gained the weight back once again but this time it was seeming impossible to get off. Every year more and more was creaping on. Taking prednisone sure didn’t help that matter. My doctor finally decided in the beginning of 2013 that prednisone was not for me. I asked him several times if there was anything I could do to help me lose the weight. He keeps saying for me not to worry about it, that its good for me to be a little bigger that way if I do go back into a major flare again then their is weight to be lost. That weight will be what will sustain me. Ok, well that makes sense but I’m only 36 and still want to feel good about the way I look and how my clothes fit and right now I don’t. I have spent countless hours in the gym and kept a close eye on my calorie count for months on end with absolutely no weight loss results. So after a bit I thought why am I working so hard just to see no results. So I started eating more again and cut back at the gym and still no change. No change for the good or bad. I didn’t gain weight either. I just sit stagnant in this weight. Yuck, really!
I will tell you that when I was on 6-MP I started to get terrible joint pains all over. I felt like a ninety year old lady with bad arthritis. Getting up and down out of chairs or the car took forever. Walking from the house to the car was a chore. My GP did some blood work on me for my yearly general check up( had nothing to do with my UC) and found that I was very low on B-12. He started me on B-12 shots once a month for about 5-6 months and I saw and felt great results. The pain was going away. During those shots I also started taking Humira shots. Now I’m not saying I don’t still have to deal with the arthritis because I do from time to time but it is pretty mild now and very doable. I’ve dealt with arthritis ever since I got UC. Sounds like it can be a tag along side effect to the disease not just the meds.
I am waiting until I have the money and I will be starting the SCD to try and stave off having to have a colectomy as I’m almost at that point as I am running out of treatment options fast. I hope it will also help with weight loss at least some.
I hope this helps in some way. Get your B-12 checked for your joint pain.
I’m over weight too. I have had UC for 25 yrs. I am on Imuran & Asacol. I occasionally get a flare up that requires prednisone to control and I gain 5-10 lbs. I can’t lose it afterward. The fatigue and joint pain discourage me from exercising. When I exercise, I can hardly get out of bed the next day.
I have lost 20 lbs. in 2 weeks from a bad flare. Sometimes I think that I subconsciously put on the weight so I will have something to lose if I have another big flare. Unfortunately, I have plenty of weight to spare.
I just heard about SCD. I am going to try it. Also, light exercise. We’ll see how it goes.
This is obviously an old thread but I’ve had some weight gain too with Prednisone and now also Hydrocortisone Suspension enemas. I was on Prednisone for only 6 weeks, a couple of years ago, but I gained 15 lbs. in that time and never lost it. I have a whole host of problems lol, including obesity, high blood pressure and high cholesterol, and also a late life onset of cervical dystonia (aka torticollis). I’m 43 and have been obese since my late 20s.
My body seems to have a hard time with exercise over the long term and losing weight these days. I have an old back injury which can still get aggravated with exercise. But, like today, I was able to play some racquetball and do okay. Not any easy sport with a bad neck but I manage.
It’s definitely hard getting proper sleep and exercise on meds, mild asthma, achy joints and muscles, etc. I am taking one Flexeril muscle relaxant every other night to help manage my cervical dystonia pain, and 3 per week doses of Hydrocortisone enemas. I’m still on the max dose of Asacol, six 800 mg pills per day. I get Botox injections every 3 months for cervical dystonia pain management and Flexeril as needed (technically allowed 3 pills a day but I prefer the 1 pill every other night).
Since my Hydrocortisone enemas, which started full time on January 15 of 2017 for 4 weeks and then switched to 3 times a week, my mild to moderate ulcerative colitis is in remission. It’s been stable since the 2nd week of my enema treatment plan, according to the February 3 2017 sigmoidoscopy results. I’ve been sedated during my last 2 sigmoidoscopy procedures due to my cervical dystonia, as well as in the past with colonoscopy’s.
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Diagnosed in 2010 with cervical dystonia and in 2011 with mild ulcerative colitis. Was diagnosed with clinical depression in 1993.
Currently taking:
Asacol HD 800 mg, 2 pills, 3 times a day.
Hydrocortisone Suspension Enemas (110 mg), 3 times per week.
Other meds: Zoloft 150 mg, 1 and a half pills daily; Welbutrin 100 mg, 1 daily; Buspar 5 mg, 3 pills daily, Flexeril 10 mg, 1 every other night; Lisinopril 20 mg, 1 nightly; Advair diskus 250, 1 puff nightly; Singular 10 mg, 1 nightly; Amlodipine 5 mg, 1 nightly; Atorvastatin, 40 mg, 1 nightly; Pro-Air Albuterol as needed; Glucosamine Chondroitin as needed; Omega 3 as needed; Tylenol as needed; Vitamin D3 in fall, winter, and spring as needed.