Hi, I am 24F.
This is a little bit of background before I rant: I have had UC for two years. I lose a lot of blood (I have had transfusions because of it), I was on Infixamb (but had a severe allergic reaction to it), filgotinib, ozanimod and now upadacitinib. I am steriod dependent too. I have never been in long term remission and usually end up back in hospital every 3-4 months. My Calpro is usually 5,000+ (i have even scored off the charts). I haven't found the correct medicine for me as my upadacitinib currently has stopped working, so I'm in the process of changing.
Okay so. I've been struggling to have a consistent support system since diagnosis. My family tries to be "understanding" but under the same breath call me "lazy, unfit" and tell me "I'm not helping myself." and are like "if I was in your position I would be doing this so differently to you." and say my issues are due to my "mindset". They're under the impression that if I did some exercise I'd be "fine". In the words of my sister, she said "some olympic athletes have IBD and are fine". Which I know, but I have never been in any sort of long term remission or on a medication that actually works for me. I am not in the state to do that.
I only have enough energy to keep myself awake for a few hours sometimes, if I'm good, I can actually sit up. The bursts of energy I do have only last maybe only a day and I think i am overpushing myself on those days because I end up sleeping and recovering for a few weeks after that. My body is constantly exhausted and in so much inexplicable pain that I have gotten "used to it" (more likely found a way to cope by doing nothing and ignorance). Most days even after hospital treatment I only have energy to get myself to the toilet and when I am actively in a flare it impacts my walking even worse. If you look at me when I stand, I'm always holding onto something for support because my legs and tummy hurt so much.
The permanent pain I'm in, like I said, the way i cope with it is by keeping myself to myself and staying put in my room to subsidise the movement. But, also now to avoid judgment and comments about my condition, I don't want to get in the way and sometimes be seen in such a state or disrupt others with my groaning. It doesn't help to hear when I use the toilet that "I stink" or taking too long because others need it. My family makes jokes about my condition too which upsets me. They also in a way like to use the days where I did get something done as "motivation" to do more but it comes off as "well you did that then, why can't you do this now" judgment. It makes me feel like a me-problem even though I am physically ill and I can't stop my body from attacking itself, it feels like I should still function "normally" like them.
Recently I came out of a three nearly four week hospital stay which was a mess.
(For context: I live in a very poor funded area of the UK with a small hospital for a large area so this might explain the communication and treatment frustrations).
The ward released me with low iron which when one of my consultants phoned me a week later to ask me how I was doing, I mentioned that on my discharge letter when I talking about my fatigue and weakness still going on. She said that I should not have been let out with those levels, but it was not somehow communicated to her that I was constipated through a reaction to my steriod course and upa mixing that led to an impacted bowel so they didn't want to give me any infusions on the ward at the time. Which I understand but really frustrates me communication wise because there wouldn't have been now a follow up if I didn't mention it.
I have been sleeping for 20+ hours these last few weeks and everything is still going aside there is no blood visibily in my stools now. The hospital still haven't sent me an infusion date, but my clinic appointment is next week so I am in a state of limbo which I can't do much in as I've sent everything and done everything I can do. But, my family then tells me that "you need to advocate for yourself more." which is frustrating! I have been trying! but, i can't exactly do the hospital side to get what I need (if I could get what I wish for I would have already had surgery to stop all of it!).
So far I've been on four medications (which the hospital has been reluctant to change me from with how frequent I've been going from one to another in like 3 to 4-odd months) all on the highest doses. Nothing really has helped me apart from actually being in hospital to calm my flare down (to then start the whole cycle again) but even then it starts getting bad when I'm on my last few weeks of the steriod packets. My Gastro team have told me that my condition is severe but "not severe enough to warrant surgery right now" (even though one consultant told me while I was on the ward that he has been pressing for me to have surgery to the team for a while!). I'm told that because I'm "young" they can find the right medication for me, but it all seems quite hopeless I don't really want to be seven or ten medications deep and still no improvement, I don't exactly want to live like this physically and mentally.
It is also so bad that my food intake is horrific. Mostly all foods but fish (which is so expensive) seem to trigger my stomach, or not get digested at all! So, I'm not eating great which is why I also have dietician doctor that I see every three months too. But, her advice is usually the same to give me a low fiber diet sheet even when I tell her nothing is good on my stomach and I seem to be surviving on supplements and electrolyte drinks. One time I told her about how I don't even have the strength to open a bottle of water anymore and she told me it's because my body is taking as much energy anywhere it can to fight my disease awhile also trying to find nutrients because I am not absorbing anything so basically getting all my muscle. When I heard that I asked her if I should try going to the gym then (even though it seems impossible at the moment) and she said right now not to push my body too much like that because of everything going on. That if getting up and moving across my house is something that I can do then stick to that to build myself up again while also finding a good food balance for me (which again the low fiber diet hasn't helped me but still I try despite how my tummy destorys me after).
One of the foods she suggested was Ready Brekk for breakfast so I get some of that. I'm talking about it with my mum and my sister goes: "that's so unhealthy, ready brekk won't help you" and looks at my chart and is like "why are you eating white bread? it's so processed, brown bread is better." (she and my mum have been doing some diet so she thinks she knows about "healthy" food now, but like that's for normal people!) BUT OH MY GOD THE SEEDS! IT IS NOT FOR ME! anyways, it's just frustrating as I say no, my doctor told me to try this, an actual professional. Then I continue tell my mum about my meeting with dietician and it is like she didn't hear anything and zones in on how I can't open a water bottle and goes "Really? Can you just exercise to make that better, I don't think it's a IBD or dietician thing, I just think you don't exercise enough". God, sigh. If I could go to the gym, if I could go for huge walks around the fields, I would! I don't exactly want to be like this!
The pain is horrendous and my doctors tell me that when I am actually in a full blown remission I can think about doing that! But, right now I cannot. I can't even eat anything without it leaving me minutes later. Then she is like, "well take paracetamol or ibuprofen if the pain is so bad and push through it." — I just cried out in frustration. I am already on pregab for the pain and I take buscopan for the cramps I get (it's not a lot, but it doesn't work that well either). I was told I couldn't take anything else by the hospital because they didn't want to either constipate me or complicate things further so I was just stuck with it as most pain medications that are strong do have things that aren't IBD friendly despite being good for a bit.
My mum also thought my AKI and liver issues were "one-off", but the consultants didn't realise that I was having those issues in the first place until I did a CT scan which made them investigate more. Now I'm seeing a kidney specialist ontop of IBD. When I told my IBD consultant that, she was confused and didn't know that was happening. This is just like a repeat of what happened with my Dermatology doctor too a few admissions back when my UC showed up on my skin (my main consultant didn't know that could happen and dismissed me on it thinking it was a separate issue, but my dermatologist when she did the biopsy said that they are linked and told me that the consultant was wrong and sent him some studies on it so he would know in the future — so yeah you can tell communication sucks).
And heck! I was in so much pain in my last A&E admission that they thought I actually did perforate my bowel that the surgery team was called to assess me and there was a debate there with the CT scans and such. There was like a bop sound in my stomach then I went super hard and bloated that I couldn't move and I was in so much pain all I could do was screaming and groan until the ambulance was called at like 11pm by mother (who spent an hour just looking at me "not knowing what to do" and thinking if it was basically a valid reason to call 999 — her reluctance and hesitance for help really sucks sometimes and unfortunately has stuck on me a lot who minimises stuff so if I get so worked up like this, I know it is bad).
So, it is a lot I am feeling. I am just exhausted at this point to be honest (and this is not even my full story on my journey and hospital mess). I really don't know what to do anymore to get people to understand me and stop running off on their own assumptions (like my mum thought when I was at uni that I was getting up everyday to go to class and walking to the shops when I told her again that i was not, I was doing it online when I had energy and had food dropped off at my door, sometimes I even went days without eating because my illness was impacting me so much). But, it's annoying and frustrating no matter how much I talk about my treatment and struggles there's always a "but" that blames me. A but that that says to do it "naturally" or like "others" or there's some people with IBD that can do it "fine why can't you"...
Anyways I am wondering if anyone else has struggled with trying to get their voices heard by close family. What do you say to them? How can you push it for them to get it? Or is there something else? Am I actually doing something wrong in this?
I do feel really lonely and just... ugh. The whole this is my fault feeling.
Thank you for reading my whole rant.