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Not doing too great!

Hi. I've had crohns disease for 10 years, until last year I was managed really well on Infliximab, and despite the odd flare I generally managed well.

In Oct 20 I became really unwell with recurrent viral illness and crohns flares. I found out in Feb 21 that I had developed antibodies to inflixmab and it wasn't working anymore.I was severely vit d and iron deficient. In April 21 I started adlibimab (humeria) and vit d, iron and B12.

I have continued to go downhill, I had to reduce my hours at work from full time to part time, and I could barely manage that. I have recurrent viral infections, my hair is falling out, my joints are in agony, I'm covered in spots and my mouth is so sore. I have widespread pain (not constant, it just appears and then goes again). I have a recurrent cyst in my groin that keeps bursting and reforming. My last calprotectin was 650 but my crohns symptoms are generally OK and I have no increased bowel pains or change to usual habits , it's everything else that I'm struggling with. It's like my body is just slowly crumbling.

My gp has signed me off on the sick for 2 months and prescribed antidepressants. My gp wrote to my consultant who has requested an mri but is unable to review me until January. I haven't physically been seen by any health professional since April 21, and that was the nurse who taught me how to self inject.

I keep calling my IBD nurse team but they say they can't offer much help as my pain is general and not ibd, and sign post me back to gp. Their advice is to await my next telephone consultant review in January 22.

Im at a loss what to do, I'm supposed to go back to work in 3 weeks and nothing has improved. I'm thinking about just quitting my job as I know I can't do it like this.

  1. Hi @Oneup, thank you for sharing with us. I'm so sorry that you are going through all this - it sounds extremely difficult and frustrating after a long period of (mostly) remission. It can be so irritating when appointments and tests are taking place months down the road.

    I know you mentioned your IBD Team isn't able to do much - how about your specific GI doctor? Has there been any luck there?

    I'm so sorry, too, that you're struggling with your job. I recently switched to a freelance work from home job so I can be more comfortable as I'm flaring, so I do understand how hard working can be. If you did quit your job, do you think you would be happy with that situation or would it create more stress?

    Thinking of you! <3 -Eshani (Team Member)

    1. hi Oneup, I was wondering what is your diet like? It’s so important to eat anti-inflammatory foods. And I know how distracting waiting especially when in pain.. have had crohns since 1994 (I was 17) been thru it! Drain bags steroids enough for a cow! Weighing not even a 100 pounds till age 38 when finally I got a resection. Anyway I’d live to talk food/meditation or anything with you!

      1. I'm sorry you are having such a rough time at the moment. I have personally struggled with the extraintestinal manifestations of IBD myself, and have sometimes found them just as difficult to deal with as the intestinal symptoms.
        Are you taking Vit D and Iron supplements now? And are they planning to review? Low iron can be the cause of many symptoms such as fatigue and weakness, along with Vitamin D. I can't tolerate oral iron, and I know some of us don't absorb it well either. I have to have infusions when mine drops low.
        I was the same with work. Reducing and reducing again. I now work for myself and it was definitely the best move I could have made for me, as fatigue is an ongoing thing for me and it's difficult to manage.
        I have also had many many periods of hair loss. I've got it short at the moment whilst I wait for the regrowth to catch up, and I am gutted about it. It's been short for a year now, and I think it needs another twelve months! >.< Mine tends to be related to stress or malnutrition. The low iron could contribute.
        Is your mouth sore in general or from ulcers?
        I'm sorry your team are not being very helpful. I do think what they said about seeing a GP for some of the other issues might be worth pursuing, because whilst they are most likely linked to your Crohn's, they can be treated separately. For example, mouth sores may be treated with medicinal sprays, mouthwashes etc. The GP may be able to refer you to a rheumatologist about your joints. When you have diseases related to your immune system, it's not uncommon to then get others. For example, rheumatoid arthritis is more common in people with IBD than it is in the general population. It's worth getting checked out. They may say it is IBD related arthritis or something, which might at least be treated or they might push your team to treat you.
        Or, you could just keep going on at your team. I recently shared a post about doctors not listening to us, and having to fight to be heard:
        Sending you gentle hugs.
        ~ Sahara (team member)

        1. Hi , I am checking in to see how you are doing! I've been thinking of you a lot and am wondering if you ended up going back to work or not? How are things in general? Hope you are well. -Eshani (IBD Team Member)

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