No pain, lots of fatigue

[dkayuk]

Hi all

My story is probably typical(?), diagnosed in 1998 and since then I've had surgery (resection) twice.

I am constantly tired, my doctor says it's fatigue due to Crohn's inflammation, this shows in the bloodtests, CRP: 18 and ESR:50 (a normal person would have 10 for both). Slightly low Vitamin D3 as well (71 as opposed to 75 which is the lowest normal value). I am also on B12 injections. I take 2 Vitamin D3 tablets (1000 iu each) a day. Questran too, 4mg or 8mg per day.

Finally, I take 200 mg Azathioprine, but I am not convinced it's actually doing anything...

There's no pain or flareups, just this constant feeling of being tired and a tendency to want to sleep. But even after I sleep, I still don't feel rested/energetic.

Has anybody dealt with this kind of situation in some unconventional way with success,ie you got some of your energy back? I would like to hear from you!!

I have an appointment next week at the hospital but things seem to take so long!! I didn't respond to Infliximab which is why I had my 2nd surgery (April 2014).

thanks
David

 

[DJW]

Hi David,
I'm going through the same thing. Mine is from the inflammation and the imuran. Since starting remicade in September, I'm slowly getting more good days.

 

[wildbill_52280]

maybe a little iron will help, it contributes to energy and we are typically lower in it, especially if there is significant blood loss which is usualy in UC though.

But even after iron supps, you will likely still have some energy issues. antioxidants like fruit might help we are under oxidative stress this is not something modern medicine measures or treats, but scientists study it, eventually its a problem that may be addressed by doctors. fermented foods could also help like yogurt, cheese etc. a littl ebit of coconut oil could help too which also has antibacterial properties, many people find it boosts their energy but its pure starated fat a little goes along way, i suggests 1/2 a gram per meal per day.

 

[24601]

Hi!

I don't think I really have any unconventional treatments or remedies to recommend for fatigue but I do think getting the inflammation under control is the first place to start.

I think you're right that the azathioprine is not doing enough to control inflammation - as evidenced by your elevated CRP and ESR. So, as you are I'm sure planning on asking, my question at your next appointment would be which meds are they going to change or add to get that under control? And what criteria will they set to decide that the new treatments are working well enough? Because with two surgeries already you are certainly at risk of more and it is important that you and your doctors do everything to avoid that. Speaking as a four timer here - 3 x resection with multiple strictureplasties and one surgery with strictureplasties alone - and 90 cm of small bowel left, so I know first hand some of the risks that come with not being able to prevent more surgeries.

Anyway I just wanted to say that I can empathize on the fatigue front and also on the appointments, and consequent changes to treatment, taking so long.

I hope you have a helpful appointment and start to feel better and have more energy soon.

 

[dkayuk]

many thanks for all your suggestions, I will try the coconut oil to see if it makes any difference. I don't have Iron deficiency (have checked).

@24601: many thanks for your reply, that does reflect my thinking too. In fact I am wondering if Azathioprine is contributing anything? Or maybe would things be worse without it. My appointment is next week and I'm definitely asking the questions you mentioned.

thanks
David

 

[EW8]

Hi David Just to say good luck with your appointment. I am here in the UK too. I think some of the answer here in the UK, is that you have to be very demanding. I have had this illness for 20 years and am down to my last 157cm of insides and am very vocal these days about how we protect it and what the doctors are doing for me. I find the more I demand, the more I actually get, albeit I do have a good team and a specialist nurse who fights my corner for me. So please go along and be very assertive and if you don't get what you want, make a fuss. Awful, but sometimes the only way to be.

 

[24601]

While it's quite possible that things would be worse without the azathioprine, your elevated CRP and ESR present evidence that it is not working well enough to control your inflammation. I would imagine that your doctor might want to try adalimumab or one of the other biologics and/or change your immunosuppressant from azathioprine to something else like methotrexate. But there are other options they might choose for example a liquid diet to get this inflammation under control in the short term (but you'd probably want to adjust your maintenance meds too) or you could try a completely different therapy like the anti-MAP antibiotics in addition to azathioprine. Basically there are a whole range of choices you can discuss with your doctor but I would expect them to be making changes as the meds you are on are not working well enough (even if they are making things a bit better, which we just can't tell because we don't know how you would be without them).

I agree with EW8 we have to be demanding - even more so when we are playing with less bowel, it is so important to maintain what we have. It's important not to let our doctors dismiss our symptoms because we are not as severely ill as we have been - for example prior to surgery. We need to set the standards high - low CRP and ESR, improving fatigue (as that's an indicator of disease activity). I note you said no flare ups right now - and I think this is symptomatic of the way we and our doctors can think in that just because some of your other symptoms are better than they were does not mean that this is not a flare or period of active disease. Your blood results and fatigue say otherwise. So yes hard though it can be at times, especially when you are not feeling up to much, we have to be assertive about requiring a more effective treatment. And if a doctor is not obliging then we have to find a more effective doctor who will work with us.