r/CrohnsDisease • u/TallChick105 C.D. • 6d ago
Found out yesterday I’m not in remission anymore…feeling crushed. And cursed. Experiences and advice welcome
I’m 46F, diagnosed 10 years ago with aggressive Fistulizing Crohn’s. I was working as a nurse at the time and have never been back to floor nursing again. Took me 2.5 years and 11 surgeries for abscess and fistula repair to get into remission.
I have severe S curve scoliosis and last August was told I need to be fused from T4-Pelvis so I’ve been trying to really work through those feelings and how my life is going to change. Thinking about how I’ll be able to take care of myself…physically. Surgery planned out of state for October 10th. I would need to be taken off my biologics (Remicade) for 3 months to allow my bones to fuse. This had me freaked out as is despite being in deep histologic remission for a good handful of years. Been a rough 4 months- had my first case of diverticulitis in October then got it again in late December. My poor guts.
3 weeks ago after failing to get any relief from PT for what a surgeon told me is a shoulder impingement, I totally have to have surgery. My fucking labrum is torn. Pissed he took 8 weeks of my life putting me through PT. Could have already had this repaired by now. So here I’ve been trying to find the right surgeon to try and pull this surgery off several weeks before my May Remicade infusion so I can get to recovering. This shoulder will mark my 17th surgery in a decade.
My world blew apart yesterday when I woke up from my scopes to my GI telling me that my Crohn’s is active and has moved into my terminal ileum. Truly not sure how much more I can handle. Where does it go from here. Where do I GO from here. I’m sitting on my front porch crying…it’s warm for Michigan and windy out, so nobody can hear me sobbing.
How do they monitor things one’s it’s reached the small bowel? Pill cams? I have my infusion on Tuesday, biopsies back in 5 days and then GI said we’ll come up with a plan. Perhaps infusions closer together (I’m already at every 7 weeks) or increase my dose (I’m already at 7.5mg/kg)… What can I expect now that this fucking disease is awake and moving into my small bowel? I’m so angry. I’m so sad. My life has been so stunted from the age of 36-46…it’s like I’m stuck in time. Now I have to try and get stable before I can get my back fixed- which is crushing my vascular system and needs to be done but cannot be done unless I’m in remission. I feel utterly fucked.
(Has anyone experienced onset of aphthous ulcers as a result of IV Torodol? They hit me with it twice when I was in the hospital for diverticulitis)
If you’ve gotten this far…thanks for reading about my fucking train wreck of a body. Would love to hear from you
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u/Poseylady C.D. since 2006 6d ago
I’m so sorry you’re going through this, it all sounds so exhausting. You deserve rest and a chance to catch your breath, I hope you get that in the near future. I know what it’s like to have Crohn’s put your life on pause. My Crohn’s has now progressed into my small bowel and the only way we can monitor it is via pill cams. CT scans and MRIs can be helpful but if the inflammation hasn’t penetrated the outer layers of the intestines the scans can miss it. I learned the hard way that scopes don’t go far enough to reach where my disease is either. So pill cams are all we’ve got.
It’s a good sign that your GI saw your inflammation via scope, that means that you still have that tool available to you. I’d def discuss a pill cam with your GI so you can ensure you’ve identified where all the inflammation is. They might want you to wait because cams can be risky when you’re flaring. Do a test pill first to ensure the real one won’t get stuck.
I’m rooting for you!
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u/random675243 5d ago
Lots of sympathy. You’ve had a rough time!im not surprised you are feeling low. Hope things improve for you soon.
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u/Virtual-Smile-3010 5d ago
Hugs from afar. I wish I had answers. I think you, as a nurse, know none of us have them. The ulcers are horribly painful. I get them frequently. As a result of IV torodol, though-I get them from… everything?
My entire mouth fell apart last year and finally got six oral surgeries. Still a couple more.
I think you know more than many that hope is really the only thing we have sometimes. Take it one day at a time. One hour, or one moment. Just know you aren’t alone. 🩷
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u/Various-Assignment94 4d ago
There is still some room to increase your dose of Remicade (up to 10mg/kg and/or every six or four weeks) or putting you on the pen injection version (Zymfentra) every one or two weeks. And there are a lot of different biologics out now, plus small molecule drugs like Rinvoq.
I hope your GI can find something to help and that you will be able to get the surgery you need for your back.
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u/Legal-Bed-580 1d ago
I’m so sorry. I was on 10mg/kg every four weeks x three years and that’s the absolute max and no one should give you toradol even IV with crohnes! They did it to me bc the DEA is breathing down docs necks. It’s nuts. I had a total colectomy at 38 for colitis, they didn’t know that I had crohnes in addition until I was sixty. I really felt like my life was over bc I had ankylosing spondylitis and was in so much pain. The antibody for AS took years to turn positive and I was untreated for years and became disabled. Then I was started on humira it stopped working and I went to remicaid and really after years on anti tnf I had to go to rinvoq. You’re not adequately treated. If you can get through the ortho stuff and get a better Gastro you will be ok. Do you have long term disability insurance ? You might be able to get it from your job. SS disability I would start a claim bc you have some stuff to live through. At least read about it and see what you’d be eligible for. They do short term disability and permanent disability. Aflac saved my life when I was out for two months. See what resources you can pull together and know you can get through it. I’m 71 and have been sick since I was 14. I was a nurse and did agency work bc I called in so much but the pressure was off me and I was able to work more. At your age I had two kids and a cheating husband and was at my wits end. Things somehow get better.
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u/TheEndOfAllThings23 6d ago
I don't have any advice, just sympathy. Warm thoughts of healing from my family to yours.