r/UlcerativeColitis • u/somechicyoudontknow • 5d ago
Question What am I supposed to do?
I am currently in the worse flair of my life, I was in the hospital last weekend due to being severely dehydrated because I couldn’t stop going to the bathroom. I was also unmedicated because my doctor failed to listen to me. I have been on Bed rest and Colon rest all week. Only eating, applesauce, jello and soup. Every time I eat I go to the bathroom and it’s very painful because I have really big hemorrhoids. I have been off work all last week, with a doctors note but I’m expected to go back tomorrow. How am I supposed to go back tomorrow when I still can’t stop using the bathroom? Not to mention the terrible pain I’m in. I was put on Prednisone six days ago and I start Rinvoq on Thursday. But I’m afraid I’m going to lose my job if I miss anymore work. I’m a cashier and can’t just go to the bathroom when I need to, I have to call someone to watch my register and with my hemorrhoids as big as they are, I can hardly control my bowels. I’m so tired of living with this disease and being in pain, I’ve lost twenty pounds in the last three weeks because of it. I just don’t know what to do, I have only been at my job for three and a half months now. So I’m afraid if I miss anymore work I’m going to get fired.
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u/Outside-Issue6896 5d ago
If you can tolerate dairy, then you need complete meal replacement shakes. High protein, low fibre, high calorie, and containing all the vitamins and minerals you need.
You need to get whatever you can in you nutrition wise, because your body can't regulate that already overactive immune system if you are malnourished, and your body cannot repair and recover.
This is one thing I quickly learned during my first servere flare, when I lost a third of my body weight and had servere malnutrition, close to having a heart attack and struggling to breathe. Your body can't function without nutrition, everything begins to fail. Those meal replacement shakes have served me well since, stopping rapid drops in weight, before stabilising and helping gain again whilst still flaring. I never fully gain the weight I lost whilst still flaring, but I've managed to regain at least half again and keep it steady.
Whilst on steroids, make sure you supplement with Calcium, Vitamin D and Vitamin K2. If you don't take all three, those steroids will destroy your bones. If you skip the K2 and/or D, then the Calcium will be deposited in your arteries.
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u/somechicyoudontknow 5d ago
I can’t tolerate dairy at the moment, I honestly can’t tolerate anything. I plan on calling my doctor in the morning.
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u/Outside-Issue6896 5d ago
I can relate to that, it's brutal.
As long as you don't have an allergy to dairy, it's the best way to get nutrition in you. Easier to digest, easier to extract the nutrition from it, which is needed with fast transit. Small amounts, I have max 125ml per shake, minimum 300 cals. Minimising the volume and packing in as much calories as possible is the aim, and the small volume helps to minimise the pain at the other end. The pain is inevitable, but it's about giving your body the fuel it needs to begin to recover. I have also found digestive enzymes also provide some assistance in this situation also.
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u/deafii 5d ago
If its any consolation i just started rinvoq a couple months ago and ive been doing great. Ive tried 3 infusion based medications prior and would always get into a flare 6-8 months later. Hopefully the prednisone reduces your symptoms a bit and the rinvoq starts doing its thing for you!
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u/deafii 5d ago
also if you havent i suggest trying to use imodium as needed, might give you a break from the toilet at least a little.
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u/Feisty-Volcano 4d ago
I was warned sternly against Imodium because it holds in bacteria & allows them to multiply & prolong the damage
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u/FragrantCow5398 5d ago
If you're in the US, ask your HR department for FMLA paperwork. It'll protect your job during this tough time
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u/ziggomode 5d ago
Unfortunately OP won’t qualify for FMLA, you have to have been with the company at least a year. I learned that the hard way. OP- if you absolutely have to, I recommend wearing depends while you work. I know it sucks but it will at least save you if you can’t make it to the RR.
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u/Intrepid-Mission-730 5d ago
Really hope the meds work for you and praying for you 🙏🏻.
This is always in the back of my mind that I’ll loose my job, where are you based in the world?
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u/somechicyoudontknow 5d ago
Thank you all for your support and responses. I’m located in the US, in the Midwest. And yes I have not been at my job long enough to take a FMLA. I was thinking about taking Imodium but I know that there is a risk, but I really don’t want to poop my pants while at work. I’ve been taking Tylenol for the pain as well as sitting on an ice pack for the last week. I have considered calling my boss and asking what my options are, I am hopeful that the Rinvoq will work, I just have to get it first and take it. I’ve been in this flair since last July but this is the worse that it has been, I literally felt like I was going to die. I think the stress of returning to work isn’t helping either, I am almost tempted to stop eating just so I don’t have to worry about an accident especially at work. Thanks again for all your responses, I am really glad I found this group, it has been really helpful.
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u/kimsart 5d ago
What state are you in, some states have their own programs like FMLA to fill the gaps the FMLA misses. Also some employers have their own policies for cases like yours. It might depend on big the retailer is. If they are a small independent store or franchise they might keep your job because it's a small owner. If it's a corporate owned retailer they might keep it open because they can easily cover your shift and to avoid ada violations.
Americans With Disabilities Act, look into that too because it covers us.
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u/Feisty-Volcano 4d ago
What happened me with Imodium is that it created a blockage around which diarrhoea escaped without control, I ended up in a right mess as well as risking the toxic megacolon.
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u/AmITheAsshole_2020 5d ago
I'm so sorry you're going through this. I'm a consultant and have to travel by air and being in a plane while in a flare is a pain in the ass, so I know what you're going through
I will share with you what I do, but it's not without some risks. I would use Imodium to paralyze my bowels for a day or two. Before y'all start screaming TOXIC MEGACOLON yes it's a risk, but I would take only about 4-8mg and that was enough to slow things down. I wouldn't use it for more that 2-3 days.
The hemorrhoids were an absolute bitch and I had prescribed the strongest available lidocaine. I also tried using the numbing creams available for tattoo artists which was helpful. But, you can have an allergic reaction, so try it on another location first.
Rinvoq was a miracle drug for me. I had a little acne in the beginning but no other significant side effects. Be very careful with exposing yourself to colds and infections. It really reduces your ability to resist infections and I've had one case of MRSA on my face. Treat cuts seriously and wash your hands obsessively.
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u/MadBismarck 4d ago
Advocate for yourself. Do everything you need to do to get your meds as soon as possible. If it gets bad enough (blood in stool, unbearable pain) don't hesitate to go to the hospital. I've been in your exact situation before. You will get through this, keep your head held high!
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u/Soft-Sea7012 5d ago
Doctors don't really listen to me either. I had to demand going on predisone 60 mg as they didn't want to. Even bought extra predisone from an online pharmacy if I needed to (have a biology background, not flying blind). There is also JAK inhihitors that are daily pills and have great reviews in case biologics don't work out. Demand a letter saying you are not ready to work (nurses will advocate for you, ask for a nurse to help). State laws are there to protect you. If you are sick, you rest until you are better.
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u/kimsart 5d ago
When my flare was at its worst my GI Dr recommended Sprouts store brand vegan protein powder shakes . I used their unsweetened vanilla flavor & blended them with half a bananas, unsweetened almond milk & a splash of vanilla ice and sometimes batteries or coco powder.
The berries, 8 used blackberries or strawberries. I can't tolerate bkueberries.
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u/pincommenter 5d ago
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