Severe Flare - Weight Gain and Suggestions Please

Hope everyone is doing well! I started off the new year in the hospital with a severe flare. Spent 6 days in the hospital and am still struggling now that I'm home. Taking 40 mg of pred but it feels like it wears off during the night because I end up going 3 times, the last 2 with a bit of blood. What I am really struggling with is getting some energy back and putting some weight on. I lost 20 pounds and get winded walking up the stairs. At the end of the day I am completely exhausted. Any ideas on what I can do to gain some weight? Obviously no fiber, sugar, dairy, alcohol. I am struggling to eat protein, every time I do I end up vomiting. I am basically eating mashed potatoes, white bread, crackers and I tried some applesauce last night but it just didn't taste good. I sent a message to my GIs office about the pred wearing off. Any suggestions to help me get back on track would be truly appreciated. I asked the NP at the GI's office for cort-enemas and she refuses to prescribe them because she's "not a fan". I am really not a fan of her either! I tried Rowasa enemas and they made the D and cramping worse.

When I went to the ER they ran all the stool tests again (12/30) even though I had had them done on 12/16. I started Entyvio in August and was just approved for every 4 weeks. Just had a dose this week - at 8 weeks from the previous and will have another in February. I couldn't tolerate Imuran, it gave me fevers. I feel better than when I was admitted to the hospital. I am not going backwards I just feel like I am not making any forward progress. Just kind of in a holding pattern. No appetite but forcing myself to eat.

Sorry to hear you're flaring.

Regaining weight:
You're not going to regain any weight while severely flaring. Next to impossible. You need to be mostly healed and closer to a remission to regain any weight. Our mouth-to-anus transit rate is too fast, and does not give us enough time to get enough nutrients from our food. And a lot of food causes pain. Best you can try is meal-in-a-can substitutes like Ensure to slow the weight loss to get an energy-dense meal with a lot of nutrients.

Pred wearing off at night:
You can ask about split dosages of pred, take half in the morning and half later in the day. That will cause a lot of insomnia though, as a warning. You could also ask about increasing your dosage to 60-80mgs of day pred, which given the hospitalization is not an unreasonable request.

@Sara14 - Trust me, if I could get in the with the GI I would completely by-pass the NP. I can't get in with him until February so I'm stuck. I started out on Uceris (because I hate pred), took 9 mg for 10 days, changed to 40 mg of pred for 3 days, ended up in the hospital at 60 mg of SoluMedrol for 5 days and have been on 40 mg of pred for 6 days.

@iPoop - I was just concerned with as much weight as I've lost. I'm on the thin side as it is and I'm down 20 pounds, I look like a bag of bones. I was thinking about the split dose or a higher dose of pred. My internist gave me sleeping pills which has made a world of difference. I am able to get a solid 5 hours of sleep at a time. I am really struggling to eat anything but am forcing myself to do so. Trying to do multiple small meals throughout the day. Guess I just need to give it more time.

Thanks for the feedback, I truly appreciate it!

Thanks Straydog, I did get some natural no sugar added cashew butter and peanut butter and have been trying to eat that with crackers.

Heard back from my GI's office, they recommend going up to 45 or 50 mg of pred. Trying 45 today and if not improvement I'll bump up to 50. Thanks for the comments everyone, it makes me feel much less alone in this!

Mrs. Brady said...
@Sara14 - Trust me, if I could get in the with the GI I would completely by-pass the NP. I can't get in with him until February so I'm stuck. I started out on Uceris (because I hate pred), took 9 mg for 10 days, changed to 40 mg of pred for 3 days, ended up in the hospital at 60 mg of SoluMedrol for 5 days and have been on 40 mg of pred for 6 days.

I see. Yes, it may just take a week or two. Pred used to work faster for me but the last couple times, I had to start at 50 mg and it took a week or two weeks to really work. I'm lucky my GI gets me in to see him. I told him I did not want to see NPs and he said that was okay and he squeezes me in to see him even though he is booked up.

I went to this in-person support group recently and someone there said instant carnation breakfast drinks taste a lot better than Ensure (I've never tried either) so you might try those for weight gain. I guess you said you don't eat sugar though so those probably wouldn't work for you then.

quincy said...
Call back and demand the enemas....tell her it's not her ass that needs them. Report her witholding meds you need.
q

Lol. Say it in those exact words, too! Jk. I agree though. That is just really weird she wouldn't give you them and didn't give a reasonable answer. I could see if she said no because you're already on a high dose of prednisone. My doctor actually told me he didn't know if steroid enemas would do anything additional when I was already on 50 mg pred. but I'm sure he would have given them to me if I had said I wanted to try them anyway.

Mrs Brady, Keep us updated please...hope no issues!

Sara...yes, I would say that and probably much more (depending on my discontent in the moment). It's not their asses who need it...sheesh.
q

Hi everyone,

Just thought I'd pop in and give an update. Saw the GI's NP, she was much better this time, thank goodness. As far as the cortenemas the entire practice no longer subscribes them. The rationale being that continued use can thin the lining of the colon and the anus. I have previously used them for extended periods and I didn't have the energy to argue so that's that. She did prescribe Canasa suppositories since I can't retain the Rowasa enemas and they were giving me horrendous cramps after using. She upped my pred to 50 mg and recommended a split dose. I tried twice taking them at night and I am only getting about 3 hours of sleep when I do that so I'm just going to take them all in the morning. I feel like I need the sleep in order to heal. She ran bloodwork and my electrolytes are out of balance and my albumin levels are low, which is a measure of protein levels/nutrition status. No surprise there since I can only keep down bread and mashed potatoes. She recommended a nutritional supplement so I'll give that a try. Worried about the sugar in it since when I was in the hospital I ate a popsicle and was in the bathroom every 30 minutes all night long spewing blood due to the inflammation. On the good news front, the bleeding has stopped. Still going around 10 times per day but no blood so that's an improvement. She also mentioned me being steroid refractory. I brushed it off because I didn't want to admit that it may even be a possibility. Denial is a girl's best friend! I just wasn't ready mentally to even go down that path. Now that I have calmed down can someone shed some light on what course of action they take if you are steroid refractory? Sorry for the long post but I don't know where else to turn for support. You have all been there and you get it. Thanks so much for reading and offering any advice or words of wisdom.

Cheryl

Glad to hear the bleeding has stopped every bit helps. All you can do is see how the suppositories work. Maybe, they will help.

The NP was correct about steroid thinning the lining of the colon & anus. This is unrelated to your situation, but I deal with psoriasis. The dermatologist ordered a steroid based topical for a short period of time only. He said long term use would cause thinning of the skin. When I read the print out, it said the same thing. I was then switched to something without steroids.

Maybe now you can get past the denial thing, not uncommon at all. I hope things improve soon for you.

If you are steroid-refractory, it means steroids have no affect on you. You'd have to use other emergency rescue meds in place of steroids, such as IV Cyclosporine or a double-dose of IV remicade as examples.

I hope the increased Entyvio dose helps. That really sucks you had to start off the new year in the hospital!

I completely understand how depressing it is. I remember so well being in the same position of crying in my GIs office. He was so patient and kind with me and went into a long explanation about the gut enzymes and depression and how UC definitely affects it I’m sure the pred contributes to that too. That made me feel better that I wasn’t just over-reacting.

I’m so sorry entyvio didn’t work for you. Will keep my fingers crossed that xeljanz is your ticket to remission.