This week seems to be my breaking point. I am now down to 0.5 pills of Prednisone so 2.5 mg and my body hates it. On top of that I can’t seem to get out of this current active flare and I’m worried weekly Humira is showing signs of not being enough.
My body is so weak at this point. It feels like everything aches and I feel like I’m going back to my old flare up more progressively. No amount of Tylenol seems to shake off the joint pain, no amount of natural remedies can sooth the hurt, no amount of Gravol can ease the nausea unless I want to be a zombie all day and just knocked out. Nothing can really be taken to calm my fricken ulcer pain down (which lately is so much more frequent). And the poop attacks are literally nauseating. I mean literally. I have had to pause a poop attack (didn’t realize it was possible) just so I could puke.
I miss being able to pop whatever pill I needed to just to get through some minor aches and pains. Now I feel like I call for pre approval for anything new that I want to try.
It’s all just becoming too much. I can feel not only my body weaken, but my mind too. I feel like I’m giving up. At what point is too much too much? Everyone says I need to get off Prednisone to make myself feel better, with the irony being that I feel more and more sicker as I get off it (I know this is usually meaning my body is showing withdrawal symptoms). But when can I tap out? When can I just stop? Or start?
“It’s just a bump in the road”
That’s what they tell you when things don’t go right. When you reject your first, second, third and now potentially fourth treatment option. It’s okay, it’s just a bump. There’s still options.
But I’m scared, what if there aren’t meant to be any options? Other than surgery I suppose, and I’m not mentally ready to go there yet. But it feels like that may become a more realistic option these days.
I’m just scared.
I feel so out of control of everything, like I’m a walking time bomb. I don’t even know what triggers my poop attacks anymore. It seems lately like just breathing can trigger it.
God, and there’s so much blood.
I was getting better and I think that’s why this is becoming harder. I started to remember what it felt like to be somewhat normal. Where I could kind of do things without serious consequences like staying up late and only getting 5 hours of sleep, or eating an extra slice of pizza, or having plans everyday of the week. I started to remember what it was like to just have bowel movements in the morning and evening, and what it was like to not see blood in my toilet. To poop with little to no pain or tears! To not be embarrassed of my body and uncontrollable gas. I even started trusting my farts again and was able to sleep on my side instead of my back so I didn’t feel like I always needed to run to the bathroom.
But not anymore. We’re basically back to square one but just trying Humira for another 2-3 weeks to see if it helps. I hope it does. I don’t think I could handle starting over again mentally of physically. Its exhausting trying to keep up to your body and distinguishing what’s normal symptoms and questionable ones. What’s symptoms from the disease versus from the medication. Will I start feeling worse and then get better, or will I just pick up where I end off and get better from that point? Will it trigger depression or anxiety? Because I’m definitely done with that. And will I be required to learn a new skills like how to inject myself?
Blah.
I am scared.
I can only joke about it for so long. I can only push myself so far. I can only try to live a “normal” life working full-time and balancing other things in between for so long. I can only handle the pain for so long. People tell me they admire me for my strength and courage, but the truth is I have never felt so weak. I can no longer take care of myself it seems. And I tell myself that there are people who are far worse than me, but it’s hard to remember that when everyone else around you seems mostly healthy.
I feel like I’m giving up. Like a part of me just wants to give in.
I think I’ll take some time off next week and maybe try to get myself back on track with some rest, positive thoughts, and a re-evaluation of what I need and want going forward. I find more and more that I’m blaming myself for what happened. That maybe I did eat something, or not enough of something, maybe I didn’t get enough exercise or drank too much. Maybe I somehow asked for this indirectly. And I KNOW it’s stupid of me to think, but it’s hard not to go there.
I’m just scared. There’s too may unknowns at this point and I don’t know which direction my body wants to go. I guess I will just have to wait and see in time.
xoxo,
Brittany
shitsandgiggleswithb.com 
That sounds awful. I’m sorry you are having such a bad week. I hope that you’ll be able to get your symptoms under control again soon
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Thank you 🤗 it means a lot
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*gentle hugs* I’m so sorry you’re hurting. The cure is worse than the disease sometimes, huh?
Here’s hoping this is the bottom and you start working your way back up to much, much better!!
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Thank you so much ❤ it really means a lot !
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Ok we are in a very similar place (humira weekly not doing much, prednisone withdrawal & return of symptoms upon dropping). If I was you I’d ask my GI about taking Uceris pills to “bridge” your getting off steroids–it’s a steroid but non-systemic. Only thing is it works better for mild inflammation & would have worked better if introduced when your symptoms first returned. But it could work. Another option are rowasa enemas, cortifoam enemas, or uceris foam enemas. Rowasa is great *if* you can retain the enema. Uceris foam did nothing for me (no surprise as I am “severe” and it works best for mild/moderate flares). But the cortifoam has definitely helped & is easy to retain (I say to you as I lay on my back in bed becsuse you-know-why).
You can also try adding 6MP or Imuran to see if it boosts your response to humira before you switch drugs. I am trying Imuran ATM. But my humira serum levels were so low (2) that I am thinking about switching to Stelara (I can’t do Remicade and Entyvio takes longer to work than Stelara–Remicade would be first choice if you haven’t tried it). You’ve got options & you’ve gotta push your GI to act or you’ll end up hospitalized soon. Have you been monitored for anemia? You need to get checked. That will really drag you down. I know you’re tired but you gotta advocate for yourself to get back on track. Let me know what you think & if you have any questions. You can do it sweets, you may have to tread water for awhile but you can reach remission–keep paddling. XOXO
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You are such an angel ! Thank you for your advice ! I may talk about going on another steroid like cortiment if my body doesn’t get it together. But I’m allergic to all 5-ASA drugs so enemas and suppositories are usually out and I couldn’t tolerate Imuran so we are trying to avoid that. It made me so sick and I nearly lost 10 pounds on it which I can’t afford to lose 😦 but maybe I’ll call my nurse practitioner and see what options I have. As for my anemia I am monitored. I do another blood test next week to see if my levels go up because i was anemic. Thank you for reminding me I have options and I hope the best for you ❤
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Ahhhh I cannot tolerate the Imuran either! Took it for 3 days and it made me bloated (so gained 5lbs, which I don’t need) and I felt like sh*t so they just called in 6MP (the metabolized version) and I reeeeeally hope it works better because I need sonething to help me wean off the prednisone.
So since you can’t do the mesalamines of course Rowasa is out but the Uceris foam or Cortifoam are viable options, plus the Uceris pill, so that’s good.
I got an iron infusion when I was hospitalized a few weeks ago and have been taking EZFE iron pills (prescription) ever since. The doc told me they are easy on your stomach, as are the infusions. Are you on iron pills? Do they bother your stomach? If so maybe look at these alternatives. Getting your iron up will make you feel so much stronger. XOXO
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I lost so much weight on Imuran ! I was constantly puking and nauseous and got the worst head aches. But I will look into those and see what they say. I mean I’m almost off prednisone. I’m down to half a pill a day. It’s just now seeing if humira will kick in to control this flare up 😦 and no I’m not on the pills because I also got super sick from that but I am taking a multivitamin to try and help. We will see if I got it up tho !
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You basically put whats happening to me into words. Part of me is relieved that I’m not the only one but for the most part I’m angry that this is happening to anyone. We don’t have exactly the same problem but from reading your post it seems that they present with very similar symptoms. Even the treatments are the same. I’ve been on 4 different cocktails so far and if something doesn’t work soon I may well be taking Humira next.
I’m at the point where I can’t hide whats happening to me anymore so out of exhaustion I just blurt out that “I have Colitis”. If they don’t know what that is, I say “Like IBS or constant Montezuma’s revenge”.
I’m sure you have someone to talk to but If you ever want to talk to someone who has a similar problem…
I hope your treatment starts to help soon.
-Mia
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Ah thank you so much for this comment. It makes me sad and happy to know there’s someone else who understands. Obviously sad because I’m sorry you even have to go through it. But if it’s any consolation Humira isn’t as scary as I thought it would be and it’s been the one medication that I’ve been on that’s given me the least amount of side effects (aside from getting sick). But I know what you mean. There are days where makeup just doesn’t save how sick I look and feel. But we are getting there and humira is showing signs that it worka. Generally it takes 6 months to kick in so it’s just about patience now. It’s been up and down but a lot better than the last few weeks. Baby steps. But I would love to keep in touch! Talking always helps:) best of luck with your treatments as well.
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