Hospital stays
So, I'm back in the hospital....
Last week, I start to notice that my output is slowing down. Meaning I wasn't pooping out what I was taking in. 4 days of almost no poops, and on Thursday, I get nauseous. I eat breakfast and go about my day. At work, I throw up and decide to go home. I couldn't keep anything down. I'm thinking I'm constipated and take some miralax and lay down to let it work. Next thing I know is I'm waking up at 11:00 that night in horrible pain and a fever. I know something is wrong and wake my husband to take me to the ER. I get admitted Friday morning. My poor husband went home to catch a nap before he had to go in and work.
I get a cat scan that shows much inflammation and an illeus, or the start of one, so off to get a scope later that day. Now, I've been on rinvoq 2 months and a week and just stepped down to 30mg. I was doing good on this medicine. 2 poo's a day and little blood. I was healing, I thought. I am learning that symptoms don't equate with disease control...
The scope was done and some biopsies taken to look for viral colitis. The Dr that did my scope is very sure that it is, but please, wait on the pathology on that. It will take a couple of days. We might get the results then....
Fast forward to today, late Tuesday evening...still no results. I've been here all weekend long taking 2 types of antibiotics, one antiviral, and steroids to lessen the inflammation. And no rinvoq to control my UC. All iv meds that take an hour to infuse with a schedule that keeps me up at all hours. No sleep. Maybe 3 or 4 hours at a time. I'm so tired. We are hoping the results come in tomorrow. At least I'm not getting worse, lol. I'm worried. I just wasted this week of work. Even if I get to go home tomorrow, I won't be in any shape to finish the week. They are ok with it, but I need to have that discussion with HR tomorrow.
I feel frustrated, angry, sadness, loneliness, mourning, and at times practical about what has happened and this process I'm going through.
I'm so tired. Going to try and get some sleep.
First of all, sorry to hear what you're going through but sounds familiar to me. I've had this happen many times over 35 years of Crohn's. I am a little surprised the results are taking that long as you are in hospital but they could just be busy. What you describe, to me, sounds like a block or partial block but hopefully, they find something soon. Speaking of the lack of sleep, I 100% understand the frustration and sadness but please understand you are so not alone in this. I haven't slept through the night since 1988 😀
Let us know how you get on
Vern - IBD Team Memberhi. I've had a rough week. I went back to work the Monday after my hospital stay, and I should have stayed home. I went home early on Monday, made it through Tuesday and Wednesday, and I'm contemplating just staying home Thursday. I was written up for not being efficient, and for not being productive, ei: as a bank teller I'm not moving my customers through fast enough. And I realized that I'm just still too sick to work. Brain fog, having difficulty communicating, fatigue. Sure, it's a first write up, but honestly, if I'm too sick that I pose a security risk to my company by trying to work when I can barely function...I need to find another job. Or just take the financial hit and not work till this is sorted.
I have a follow up with my gastroenterologist on Tuesday of next week. The results came in negative for CMV and HSV, still highly inflamed with an illeus. Do those heal up when the inflammation is gone? I've failed the rinvoq. It was great for keeping symptoms down but did nothing for my disease. I'm in as bad shape as I was months ago, but with fewer symptoms. Ugh!
I give up. I'm too tired to fight this anymore.
Hi
. Your frustration is more than understandable. Concerning an ileus it does appear that time, fluids, and rest are major components of treatment (see here for more info: https://www.ncbi.nlm.nih.gov/books/NBK558937).
People here know how hard it is working with IBD. Is it possible to discuss the situation with HR at your job and to see if you can come to an accommodation? I want to share with you this article on disability benefits: https://inflammatoryboweldisease.net/resources-disability. This includes information on the Family Medical Leave Act, which might be of some interest.
I also want to note that people here also know how tough it can be to find a treatment that works. You didn't fail Rinvoq - it didn't work for you. Hoping you can get some answers and new treatment ideas when you see the gastro on Tuesday. Please feel free to keep us posted. Best, Richard (Team Member)
Hi
. The emotions you are feeling are certainly understandable. You may not be feeling like doing much reading, but I want to share with you this article form our patient leader Shawn simply titled "Give Yourself Permission to Feel:" https://inflammatoryboweldisease.net/living/permission-to-feel. She discusses giving yourself permission to be sad and to grieve - feelings you describe. The emotional stresses of this disease can create a horrible feedback loop, adding back into it. It is great that your employer is o.k. with giving you the time you need to get better. I hope that helps alleviate some stress. Hope you get some answers and relief soon. Best, Richard (Team Member) thank you, I will read this tonight. I'm a firm believer in experiencing emotions and then moving past them rather than holding them in to fester.
So here is an update to what has been going on...
When I went in for my appointment on Tuesday, I was in such bad shape, my gastroenterologist direct admitted me to the hospital. Tachycardia, unexplained fever, Yada Yada. And I spend another week there trying to keep stable. They did another cat scan and chest exray and found something they wanted a better look at and did an MRI....
Perianal disease. One small intramural abscess and a very small fistula from my colon to my vagina. Yea! Oh happy dance!...not. But this changes my diagnosis from UC to Crohns. Which opens up some treatment options I didn't have.
In the meantime, I'm on antibiotics for the abscess, (its too small right now to operate on) oral solumedrol steroid, miralax so I can poop, and another leave of absence from work so I can try out skyrizi and see if it works. I hope I can start that next week.Hi
. I completely understand the "not" on the happy dance, but hoping all of this leads to some effective treatment. Your doctors may already have mentioned this, but want to note that according to the manufacturers site "Significant symptom relief as early as 4 weeks, including: less abdominal pain. fewer bowel movements:" https://www.skyrizi.com/crohns/skyrizi-results. Hopefully the other treatments will help in the interim. Wishing you the best. Richard (Team Member)
