Am I being stupid?

[Ian]

I've been in a flare since late November/early December, for which I began Humuira on New Year's Eve. A week after my load-up dose I saw improvement but began to decline again a week later. Last week my Doctor gave me the go ahead to go up to weekly injections, so on Friday I had my first weekly one after having been on a fortnightly routine before. I've seen no improvement, but it's only been like 3/4 days. I probably can't expect to see improvement so soon, and yet this weekend I've gone into a mental tail spin over it all.

This time last year I had my worst flare which resulted in the first and only hospital stay of my life. I'd reached a point where Pred wasn't doing anything, and even Hydrocortisone failed me. It was an Infliximab infusion that got me out in the end.

Anyway, that was literally a year ago this week - maybe I'm having some anniversary induced anxiety lol. I'm convinced the Humira is a dud and I don't want to sit around waiting to see if it will kick in while I potentially get worse, because I don't want to get so far gone that Pred doesn't work (like last time). I'm worried Remicade will be less effective the second time around due to what I've read on here about the body recognising it as a foreign agent the second time and producing antibodies to destroy it. If that happens, and I get as ill as I did last year, I think surgery would be the only option I have left. I can't stop googling stuff about surgeries and keep getting myself wound up about it!

And this flare is weird. My only real symptom is about 3 liquid b/ms per day that basically just look like quite a lot of blood in the bowl (the ongoing bleeding concerns me because I don't want it to cause permanent damage). I have no abdominal pain (my stomach has recently started to feel tender and warm to the touch but that's it), no gas, no nausea, no fever, no unintentional weight loss - and no anaemia because I'm taking iron to counteract the blood loss. The flare feels minor but because it's been going on for a while I'm starting to freak out a bit. I'm convinced I'm more sick than I feel, and can't leave the house or get any Uni work done because it's so mentally distracting. As much as I hate Pred, I think I want to take it and soon - it might be all I have left. And if I leave it too long, I'll be too far gone for it to work.

I just emailed the nurse practitioner who works with my GI telling her how I'm feeling (mentally I mean, as physically I'm not really any different than when I last emailed her). I feel kind of stupid now, like maybe I'm overreacting. Maybe I need to give weekly Humira a bit more time, but how much? I figured if I wasn't sure it was best to get in touch as it can't hurt, but I really don't know how legitimately concerned I should be and how much of it is me scaring myself. Ghaaaaa! And THIS is why I'm not sleeping properly now, NOT my Crohn's lol.

Sorry, that was disgustingly long winded. Congratulations to anyone who made it to the end. Any thoughts on this would be greatly appreciated

 

[Rebecca85]

This might be a daft question, but are you sure it's a lot of blood in your BMs because the iron tablets can turn it pretty black!

As for thoughts on treatment, I'm afraid I don't have any experience with the biologics, so don't actually have anything helpful to add (sorry) except try not to worry too much, wait and see what the nurse or GI say.

 

[Ian]

Hi Rebecca,

Yeah it's not the iron, it's bright red fresh blood I'm seeing (I get the feeling there's inflammation close to the rectum and it's coming from there). Funnily enough, my b/ms were black a couple of weeks ago (when symptoms were better) due to the iron, and that's completey stopped now even though I'm still taking them.... maybe I'm absorbing more of it because I'm bleeding more?? I don't really know how it works.

 

[Rebecca85]

I guess you could be having a flare of proctitis (inflammation of the rectum), which would explain the bright blood, and why you are having no other symptoms. Maybe a enema treatment would give you some relief? Like you can get mesalamine in an enema, I know it's not a strong drug, but applying directly to the affected area would be like putting cream on a patch of eczema. If nothing else it should soothe it a little.

 

[BLM]

I think we know our bodies best, and if your concerned....the right thing to do is voice your conerns. I know how anxiety provoking this disease can be....I take depression meds and anxiety meds...it seems to help. The more you stress yourself out...the worst it can become. I think your symptoms and thougts are relevant and I would be calling the dr too. Good Luck Ian, and feel better soon~

 

[Ian]

Thanks for the responses.

Rebecca, I assumed the same thing about it being a flare of proctitis. It feels much more similar to my initial pre-diagnosis flare 6 years ago than the Crohn's-like attack I had last year. I still have Predfoam enemas on my repeat prescription so I picked some up and have been using those for the last couple of weeks. They have provided some temporary relief (like when I've felt very inflamed after a b/m) but obviously like you said that kind of thing isn't strong enough on its own.

Bev, thanks for telling me I'm justified in contacting them, I know that deep down but 'cause I hate to cause a fuss over nothing I always second guess myself!

I didn't get a reply from them so I did resort to taking a dose of Pred... (I always have some in supply if possible) - and the difference after one dose was huge. Little to no blood today, I spotted some actual solid (and it was black 'cause of the iron, yay!), and I generally felt stronger and better in myself. Managed to get loads of work done today! I hope this is what they end up recommending because I don't want to have to go back to feeling crap for the sake of waiting and seeing if the Humira takes hold on its own. I always feel guilty self-medicating but I felt desperate and the benefits far outweigh the negative side effects for me - even though I'm loving being at my lowest weight in about 2 years - all my shirts fit again! Don't suppose that will last long haha.

Thanks again guys. Will probably get an email from them tomorrow. Hopefully they suggest Pred so I'm not forced to confess I already took some!

 

[Jennifer]

Ya I'm not a fan of self medicating either and I don't recommend it to anyone here.

Black stool doesn't always mean its from the iron tablets. It can also mean that you're bleeding further up from the small intestines. Bright red blood doesn't always mean that its coming from an area near the anus. I was bleeding bright red blood from the sores in my TI. Has your GI not done a colonoscopy to see what the damage is? I don't know any good GI who wouldn't with that much blood loss and especially not for that long. I think you should get on your GI's butt and get some answers by having a scope done and get the proper medication going.

Could be a dumb question, but why can't you take Humuira and Prednisone at the same time? Its often the combination of drugs that fixes us up (especially with a bad flare like this, bleeding is never a good thing even if you don't have other common symptoms).

 

[ameslouise]

Hi Ian - I think you are right to question your course of treatment -we should always be looking at what's the best option for our own situation.

IMHO, I think you need to give the Humira a little more time. My doc told me it could take up to 4 months to really work. In the meantime, ask them about a blast of pred - maybe start at 20 or 30 mg to knock it down till the Humira kicks in. If you get off the pred in a couple months and you are still feeling poorly, then you know the Humira isn't working.

That's what happened to me, for what it's worth. But I felt it was necessary to give the H the proper amount of time.

Good luck. You seem like a smart and together kid - I'm sure you and your doc will make a good decision.

- Amy

 

[Ian]

CrabbyRelish,

I had a relatively recent sigmoidoscopy that found inflammation in the large bowel, and an MRI that showed no inflammation in the small intestine which is why I've never had a colonoscopy. I've been diagnosed with Crohn's Colitis because it's all limited to the large intestine. I know bright black stools can be a sign of digested blood, but that's definitely not the case here. It begins as soon as I take iron and stops as soon as I stop taking it (I ran out for a few days a couple of weeks ago and they went straight back to the normal colour lol). But yes, I need more direct contact with my GI. The trouble is I'm at University and my GI is at home, so it can make things difficult. I think this is why he suggested Humira, as it's much more convenient than coming all the way home for a four hour infusion. However, Remicade tends to work much faster and it's worked for me before. That might have been the better option.
I can certainly take Pred with Humira, I just haven't been told to. That's why I feel like a bit of a rule breaker at the moment haha. I know it's safe for them to be taken simultaneously though, it was in the literature. I've planned a visit home soon so I'm definitely going to try and see my GI then

Amy,

I'm all for giving the Humira more time, but with Prednisolone as well like you say! I'm a little confused as to why I'm being expected to wait, while symptomatic, to see if Humira works, when it could take 3 or 4 months to really take a hold. Again, seems like Remicade would've been better despite being a bit inconvenient. I know my GI was trying to spare me the pain of steroid treatment, but sometimes it just has to be done.
And sorry to hear you had no luck with Humira. What ended up working for you in the end?

Thanks for the replies both of you, I definitely don't feel like I'm being stupid anymore!