Newly diagnosed and lost

[JanetR]

I was diagnosed with Crohns ab 3 months ago. The 3 months prior to that no one knew what was wrong with me. I was tested for pituitary tumors, carncinod tumors and everything else. First colonoscopy was negative. 2nd colonoscopy is when crohns diagnosed. Since then I have been prednisone and Asacol. This did not work for when I was tapered off pred all the symptoms drastically came back. I am now on my 5th week of imuran and back on prednisone. Only on 5mg until imuran has full 6 weeks to work and then will taper. The last couple of days have not been good. Stomach upsets, don't feel like eating, becoming more anxious for I am trying to work full time and be a mother and wife to two amazing boys. It seems like everytime my stomach flares I get more anxious when it is not I feel fine. I cant help but wonder if I am bringing on these symptoms. Has anyone else felt this way? People say they understand but don't think they really do.
The other thing is my hair is thinning really bad. Is this the prednisone, imuran or malabsorption? Dr says vitamin deficiency but I take a multivitamin, b complex and biotin. Any suggestions?

 

[xSophiexx]

hi JanetR sorry to hear you feel so bad! the hair loss is probably imuran im afraid :-( hope u start to feel better

 

[Angrybird]

Hello and and welcome to the forum.

With regards to vitamins has your doc done bloods to actually check your levels? If you donhavw a deficiency in this area usually over the counter supplements will not be at a higher enougn dose to treat this. With regards the thinning of you hair it could be down to the Imuran, I had the same problem both times I was on this - what dosage are you on? Also the Pred might need to go to a slightly higher dose to keep the tum the settled whilst the Imuran kicks in - this can sometimes take up to 12 weeks, this may also be contributing to your anxiousness. When are you next seeing your doc for a check up? Have you also been put on a calcium supplement for while you are on the Pred?

AB
xx

 

[Chally2]

Hi Janet I've had Crohns foe 13 years now and been on prednisolone for a lot of those years. Your doctor should have told you that one of the side effects is it can affect your mental health. Not everyone has the same symptoms and they are not always severe.
Some of them are depression, feeling anxious, weight gain, moon face to name a few.
I think you should be ok at the moment as you haven't been on a high dose for any period of time but anxiousness was one of the effects it had on me along with depression. But your illness can also bring on those symptoms especially if you have just been diagnosed and are trying to get your head round the whole situation. The best medicine for you just now is support from your family friends and your doctor. Give your family as much information as you can find on Crohns and let them know that when you are unwell they will all have to start working as a team to support you in every way. Yes even doing the house work lol.

Hope that helps a little.

 

[JanetR]

Thank you all for taking the time to reply to me. I am having a rough day. Tomorrow will be better. I have not had any vitamin levels drawn. He said he didn't think it was prednisone and I would be the first he heard of if it were imuran. The plan was to stay on 5mg pred until 6 weeks of imuran for that is how long he said it would take to work then taper the rest of the way off. My husband has been a real support like right now he is out christmas shopping while I hv been asleep for majority of the day for whatever reason, all the diarrhea starts between hours of 2-4 am. So I don't sleep well. I'm sure this doesn't help anxiety either. Really not sure when my next appt is. I work at the hospital w this dr so I see him quite frequently. I think I see him as a patient in January. Thank u all. I'm new to this forum and putting all my personal info out there but I think it's a great idea for y'all are great resources.

 

[Angrybird]

I do hope tomorrow can be a better day for you, I would definetly look into getting those levels checked- your GP could sort this if you are not due to see the GI doc for a while as a patient.

 

[xmdmom]

I'm sorry that you are dealing with all of this. I'm not sure what your doctor was thinking when s/he put you on 5 mg of prednisone. The 5 mg dose of prednisone is too small to do anything for Crohn's. (It's approximately the dose of steroids that a person makes each day normally.) When you were initially weaning the prednisone, was there a dose you were doing well on? As you're not feeling well, one option may be to go back up to the lowest dose of prednisone that worked while you wait for the imuran to kick in. My son's doctor told him it would take 3 months for imuran to work-- it may vary depending on what dose a person starts on. I'd definitely let your doctor know you're still feeling ill.

Hope you will see improvement soon!