Tiredness and Crohns nightmare !!!

Ah john i really feel for you, and experience the same myself!

Are you in the uk?

If so, you could ask for later start or earlier finish at work?

Have they checked your b12, iron stores and folate?

Im sorry you feel so rubbish, i know how awful it is.

X

I know it is tough. I am in the same boat. Sometimes it is the medications that cause more problems than they help. I am in a state of remission but I still get a lot of pain and nausea at times. It is a terrible disease. Hopefully the new doctor will have some ideas for you if not I find if you seek out the best learning institute in your state, if you live in the USA. They will have programs and doctors that specialize in IBD. I am talking about Universities that have medical institutes in them such as UCLA or UW. They have some of the best doctors around and most standard gastro's don't specialize in IBD so they are not what you want if you have a complex disease such as Crohn's. Hang in there man, you are not alone.

Hi Jon,

I was going to mention iron too. Even if your haemoglobin levels are normal is your ferritin level low?

Please can I ask if the tiredness is constant, all day every day or does it fluctuate?

I am having real problems with fatigue but can be fine for a few hours or a morning and then it seems to hit and floors me making me feel very weak. Some days are the opposite and I feel weak and fatigued from the moment I wake up but then can feel better by the afternoon. My calprotectin level is high at the moment. My ferritin level is 4 but my haemoglobin is just borderline normal so my GP isn't concerned and has just told me to take iron ( which I struggle to tolerate).

Like you though it is very difficult at times - I can feel so weak that I won't drive some days.

Sorry - I'm not much help but I too would be interested in how others cope with fatigue.

I hope that things improve for you.

Hi Jon

Have you had your Ferritin levels checked. Sometimes it can be very low without being anaemic and cause major fatigue, cramps, headaches, dizziness, aches and joint problems and make you feel very low. On top of dealing with a stricture and meds it could be making it all worse.

If you do get your levels checked ask what it is or even get a print out and check the 'normal' ratio..... They'll tell you all is normal even when it is very very low!!

Hope this helps

Good luck with the new doctor and hope things improve soon.

Hannah

Dear Jon

I as diagnosed crohns 2 years ago, had several courses steroids, and developed a stricture. My gastroenterologist tried me on various meds

pentasa methotrexate, mercaptapurine and others I can't remember the name of.This was after an emergency appendectomy!

Eventually missing lots of work, tired so bad I just wanted to curl up and die, pain very bad some days.

Eventually stricture had reached 20 cm and I had a cry in front of gastro. He put me forward for surgery to have a right side

hemicolectomy, was off work six weeks and now four months later feeling so much better crohns in remission. I also had gall bladder out at same time.

Tiredness is much much better and lack of pain is fab. I'm still not perfect but so much better, just kick myself not asking for surgery earlier.

My stricture was in terminal ileum.

I live in Cornwall and am under the Treliske (Truro) Hospitals Inflammatory BowelClinic team

And my gastro is Mr Dalton, total hero, my surgeon was Mr Widdison. I was out of hospital within 48 hours . Hope all this helps

Key thing is a good gastro and get referred to IBD clinic if not already.

Good luck

PS I'm 52 and female

Jon, from my own experience with this problem the most likely cause is low B12 and/or low ferritin levels in the blood. These can easily be tested for. B12 is easily put right by injections at your GP. Ferritin is more difficult as iron tablets are not easily absorbed due to Crohns. I have tried liquid iron (flavoured) bur effects were marginal. Best solution is a Ferinject iron infusion which can only be done at a hospital. Threshold for this is quite low at about 12 however in my case they said the ferritin level of 27 was falsely high due to high CRP so I got the infusion.

Another cause of the problem is kidney failure but with this you also get loss of appetite and nausea. A blood test for potassium and creatin levels will identify this and if the potassium is too high you get a call from NHS telling you to check in to A&E where they put you on a saline drip to bring down potassium.

Hope this helps. Best of luck.

Patricia

Jon,

i saw my gp yesterday about this,

she did

bp, weight, and I shall have bloods checked again.

didnt get an answer about it!!

she prescribed ensure plus drinks.

my last bloods

ferritin 6 

b12 230

she said these are 'normal' but ibd nurse said they are low end.

so, I wonder if we suffer with symptoms even though are bloods are normal?

is your diet restricted?

i see you feel worse as day goes on, I wait for the kids to go to bed, so I can crawl into mine!