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A Year Since Diagnosis

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Ulcerative Colitis
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Posted 10/4/2022 1:24 PM (GMT -8)
Hello,
I’ve just begun Entyvio infusions and am on Budesimide orally. I’ve lost 40+ pounds since January, which is a good thing health-wise, but it’s all due to my restricted diet. Vegetables and fruit seem to always cause diarrhea, so they’re off the table for now. Carbs and protein in small amounts are what my daily diet consists of.

I can go two or three days with no problems. Then, usually after the evening meal, I’ll have 4-5 episodes of severe diarrhea before bedtime. I resort to taking Pepto Bismal, and usually can stop things within one or doses. It’s a precarious situation the next morning, because I’m hesitant to leave the house. Thankfully, I’m retired though I do enjoy getting out of the house.

Recently, I feel a type of fatigue I’ve never had. Is that a symptom usually encountered? It’s unreal.

Guess I just wanted to ask those of you who’ve been living longer with UC than I if this sounds familiar. I trust my doctor, and he has no problem with the Pepto routine.

Thanks.

L.
Posted 10/4/2022 1:37 PM (GMT -8)
Fatigue is a symptom. I've been in remission for quite a few years now, but when I was having issues, I was always very tired.
Posted 10/4/2022 2:04 PM (GMT -8)
Thanks for your response!
Posted 10/4/2022 4:38 PM (GMT -8)
The fatigue is real and has always been a challenge for me. I know I am doing better when I don't feel so exhausted. Hopefully the entyvio will kick in and you will start feeling better soon.
Posted 10/4/2022 4:56 PM (GMT -8)
Thanks! Do you have experience with Entyvio? I’ve done two infusions so far. Honestly, I'm a little concerned about it compromising my immune system.
Posted 10/5/2022 11:19 AM (GMT -8)
Make sure you are getting enough protein. I worked with a nutritionist who advised getting at least 100g per day, as our body is contstantly trying to rebuild itself and thus needs more. I found I was most fatigued when I wasn't eating well. I try to avoid anything that is inflammatory, like alcohol and sugar. Cooking veggies well helped me tolerate them better. It's taken me six years but I am feeling about 98% normal now. Entyvio didn't work well for me and actually gave me so much pain it was intolerable. I didn't know it was the problem until I had to stop it for surgery. It does target the gut specifically so I wouldn't worry too much about it's immune suppressing effects.
Posted 10/5/2022 12:03 PM (GMT -8)
Thanks! I’ve not had much help from the nutritionist. I plan to address it with my gastro. I’m not getting anywhere near 60 g of protein a day. Glad to hear you’re doing well. Gives me hope!
Posted 10/5/2022 5:10 PM (GMT -8)
I’ve been on entyvio and in remission for 5 1/2 years now. It has not compromised my immune system at all and in fact I think I have been less sick than was my norm. Hard to tell the last few years though with the mask-wearing and isolation. I’ve been part of the studies from John Hopkins and UNC with those of us on immunosuppressants and covid vaccine antibodies and entyvio has scored very high response with antibodies, along with stelara I think.

It took me about 4 months for complete symptomatic remission on entyvio — but there was much relief of symptoms along the way. I think fatigue was the last to go. There were days it was hard to really move at all. I think it’s a combo of weight loss, malnutrition, and the disease itself!

Good luck! I wish you the same good response as I had with entyvio. And btw, I have zero side effects!
Posted 10/5/2022 5:54 PM (GMT -8)
You have no idea how welcome your post is today! I’ve let doubt enter my mind, searching for any positive news regarding Entyvio and its effects. I’m so happy for your success and hope to “be like you”! Thank you so very much!
Posted 10/5/2022 6:30 PM (GMT -8)
So happy I could help! I had zero quality of life before entyvio. Afraid to leave the house because of the urgency and accidents. Plus even standing or walking for any length of time gave me a horrible lower back ache along with fatigue. I remember crying, wishing I had my life back. …. And now I do! 😀
Posted 10/5/2022 6:40 PM (GMT -8)
Amazing! I’m totally at the point where I thank God I’m retired and can set my schedule. With fun things on the calendar upcoming, I’ve packed a bag with supplies and Pepto and pray I won’t have an accident. I’m so happy to hear there is a return to near normal. Thanks for the encouragement!
Posted 10/6/2022 8:56 AM (GMT -8)
I’m happy to answer any questions you have!

Also, have you tried uceris (budenoside) rectal foam? I used that and found it soothing and helpful while waiting for entyvio to kick in. There’s also mesalamine and steroid retention enemas for nighttime that are helpful.
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