Life is a rollercoaster!

Good morning all!

Well.. what can I say? I was on a super-high from the infliximab after the hospilisation dramas.. I've now had my three loading doses, and am due my next infusion on 30th June. I started Methotrexate two weeks ago (following advice from you guys and a chat with my GI - Thank you!).

Thing is - I am now up to three BM's a day, all sort of mousse textured, my GI didn't seem concerned as there is little to no blood/mucus. There is nowhere near as much urgency, so I can cope.
The real battle is the fatigue - it's come back and hit me in the face like an iron bar. I'm going to bed at 9.15pm at the latest, and getting up at 5.45am for work - but that's a struggle, and by midday I am ready for bed again. Which is frustrating to me, and seemingly my partner too - who told me to eat more protein and get down the gym (easy to say when you don't feel like the walking dead!), he has a point I'm sure - but I feel like a danger driving home from work, I'm not sure a workout on top of that would be wise right now.

Do you think I should see my GP (it's easier to get in with him), or try and get in with my GI? OR should I just grin and bear it and see if it passes? I spent 13 years of my life being exhausted and thinking it was normal - after 2 months of feeling awake I am battling with it big time!

I've made sure I drink enough water, cut out completely fizzy drinks (not easy for a sugar addict!), and keep an extra close eye on my diet (some foods irritate me more now than they used to), so I'm not sure what else I can do?

Thanks!

Ps; I know I'm not a UC-er so to speak anymore, but you lot are lovely and I trust and respect your advice!

Did you recently taper from Steroids? You might be going through withdrawal. That would always make me tired to the point were I couldn't think about anything but going back to sleep.

Hi Red_34, I think they tested for B12 at my last infusion, so not sure if the results were back when I saw my GI the week after.. same with iron. I felt great until a couple of weeks ago - really well! Would it take a while for thee remicade to cause fatigue?

ks1905, I finished my last course of steroids I think it was end of April, so just over a month, and had a hydro-cortisone shot before my last infusion. I've tapered from steroids before and not felt like this, though I guess each time cold be different, it just doesn't feel taper-induced. Again, worth considering - I might speak with my GP about it.

iPoop, I'm not sure on iron. It was low when I was hospitalised but that was because of blood loss, they did test at my last infusion but I'm not sure on the results...

What I really want is to lay in the hot sun for a couple of weeks by a private pool and hope that it just all melts away - some proper R&R, you know? I remember a Prof I used to work for said to me that 'You people with IBD are your own worst enemies - learn to relax and take time to heal properly!'.. Maybe I, and we all(!), should take that advice!

Not massively enthralled at a weekend pretending to be happy and awake!

Thanks Dikid - I will make an appointment with myGP early next week and see if he will order some blood tests...

Oo well, I guess 'almost' welcome to the CD side of the road - I can't say I've noticed an enormous difference so far, but sometimes it catches me out and I sit in stunned silence for a little while that everything I had come to terms with has been changed (in a very obscure, unnoticeable way!)...

aimz said...

Oo well, I guess 'almost' welcome to the CD side of the road - I can't say I've noticed an enormous difference so far, but sometimes it catches me out and I sit in stunned silence for a little while that everything I had come to terms with has been changed (in a very obscure, unnoticeable way!)...

My GI calls my diagnose CD, he says it makes it easier to get the off-label Medications from the insurance company, that's how I was able to get Stelara because it is already in the FDA approval process for CD.

To me, I have what I have, it really doesn't matter the name that they call it.

While you're getting levels checked, be sure they include vitamin D. Most of us are moderately to severely deficient and a lot of us take massive daily supplements. Be sure to follow your doctor's instructions regarding vitamin D, because too much can make you very sick.

As far as fatigue with IBD goes, mine has never gone away. Through six years of severe flaring, then it got a bit better during my now ten-year remission. But I'm still tired and have no ability to "get over it". Our spouses and partners, to be blunt, often just have to suck it up and deal with our inability to be the persons we used to be. They suffer the results of our illness, but not nearly as much as we do. I've learned to take frequent rest breaks, sleep when I feel sleepy, and to not waste my limited energy fighting the fatigue or apologizing for it.

aimz said...
Hi Keith,

I know what you mean Re the name of the illness - it doesn't change how it feels! I will definitely ask to get all my levels checked.. I do take folic acid once a week, though I'm not sure why either!

Thanks for the advice!

Aimee

Aimee,

I think with MTX you are supposed to take Folic Acid but check with your GI.