Struggling at the moment

[Tan]

struggling at the moment

Hi all... well the last few days I have gone downhill, not bad like I was when I was first diagnosed but not great either. For the last few days every morning I wake up with extreme nausea, have more frequent BM and overall feel rundown like a bus has hit me, also struggling to eat seem to have lost my appetite (although Im not sure where it has run off too) Yesterday I slept most of the day on the couch as I just had no energy to do anything else.
Im stressing that its the start of another flare but Im also on antibotics for my sinuses however I would have thought it wasn't from my sinuses as Im nearly finished the course plus I don't get bowel or appetite issues with sinus. Its just sooo hard to determined what is cause by crohns and what is from others things going on with my body.
I also increased my 6mp dosage 5 days ago after being on a lower dose for the first 2 weeks so not sure if this is also contributing as I didn't fair well on Imuran.
Im just feeling really down at the moment and each night I go to sleep hoping that I will be heaps better the next day!
Thanks for listening I just really needed to vent and get it out there as Im struggling at the moment to understand what is going on and it helps to know that there are others out there who are going thru it too. Thanks again.

 

[imisspopcorn]

Sorry Tanya....That's one of the most frustrating things about Crohn's...trying to determine if it is the disease or something else making you feel crappy....

Now that I am feeling much better all around, I can tell you that it is probably the disease. Just look at people who have no chronic illness. They don't feel like we do. I hope you feel better soon...Keep an eye on the 6mp because it is similar to Imuran. I thought if you didn't tolerate one, you won't tolerate the other....Feel better

 

[GoJohnnyGo]

Sorry that you feel so bad, Tan

Have you looked into Vitamin B12 or Iron? Sorry if this is ground already covered.

 

[Tan]

Thanks guys for your quick responses.. Johnny I haven't looked into Vitamin B12 or Iron have to go to chemist after so might look into this. Its just a struggle to function when you feel like this especially this time of the year when we should be celebrating not feeling like we are dying. I dare say it will either be the crohns or my meds as I am have frequent BM, my butt is soooo sore at the moment. I finally got a banana down and have been having supplement shakes so hopefully I wont lose any weight. This disease makes you so depressed at times only last week I was feeling great and thinking Im starting to get it under control and bam your back to feeling like crap again.
IMP - thanks will keep an eye on the 6mp yes I think its a sister drug of Imuran but apparently it doesn't have as many side effects and is meant to be tolerated better, but we will wait and see. If I keep struggling might reduce the dose back down and see how I feel. I have to do something as I don't see my GI until mid Jan as he is away on holidays at the moment and I go away on holidays in a week to visit a friend so I don't want to be like this during my whole visit.
Thanks again guys it just helps so much to have others to talk to who understand what Im going thru.

 

[shazamataz]

Hi Tan and ((((HUGS))))
I totally hear you! I was feeling pretty positive recently. Still really tired but I've had that fro years, But all good in the bowels and feeling optimistic that I could get a handle on it all and then yseterday spent the whole day in bed after a nasty night and D all day. It is so discouraging, especially at this time of year eh?
Everyone is off having fun - it's summer! - and I'm in bed watching silly movies on TV.
I hope you feel better soon. You are always so positive on here and I find it encouraging!

 

[AmandaC]

Hi Tanya,

Sorry to hear you haven't been feeling the best. It's very frustrating when you have other things going on in your body and it's hard to know if it's the Crohn's or something else.

Hopefully it's just your body adjusting to the medication. Hope you feel better soon!

Amanda

 

[Tan]

Thanks Shaz for the hugs I def need it at the moment. Im glad my positive outlook on life is uplifting for you. I am generally a person who doesn't look at the negative side of things but today and the last few days has really gotten me down. I know I will bounce back and just have to get thru this stage but it is very frustrating considering its summer time and holidays and I should be out having fun instead holed up at home watching daggy movies and mostly sleeping as Im so damn tired. I can't believe how tired I am... I must have slept over half over yesterday and then still slept a solid 9.5 hrs last night. Lately I had been having trouble sleeping so I probably should be thankful. Like I said will see how I go on the meds hopefully get there soon.

 

[GoJohnnyGo]

Vitamin B12 is a big one -- it's absorbed in the ileum (a common area of inflammation and strictures for Crohn's sufferers).

An injection every other month seems to perk up a lot o' folks.

 

[Guest]

hi Tan.. i hope this is just a little hiccup and things will settle down for you... it could just be the effects of this time of year - i know that might sound silly but with Crohn's, any additional upheaval/stress/big change in eating times and habits can really upset the delicate balance a lot of us strive to achieve to keep things level. also, the B12 is definitely something i would recommend you look into - extreme tiredness is one of the side effects of B12 deficiency - you just need a simple blood test to check your B12.

 

[tamesis]

Hi Tan,
Sorry to hear you're having a rough time! Hope things get better for you soon.
**hugs**

 

[Peaches]

Hi Tanya - sorry you are feeling yucky!!! In reading that first post - I just wonder what antibiotics you are on for the sinus infection? Some of them can really effect your gut. Have you tried eating probiotic yogurt to replenish any flora the antibiotics might have killed off? That might help your gut. Also the increase in your 6MP would definitely be culprit in my book as possibly making you feel not so great - unfortunately you've had to make two changes kinda all at once, so it could be difficult to know which one if either is causing the problem. I hope you get it figured out quick so you can have a nice holiday - sounds like you need some happy time to keep that positive attitude going :O)

 

[fenway1971]

Tan,
Check your Vitamin D levels also. I was extremely deficient and have been taking supplements which helped.

Fatigue and 6-mp are common especially when first getting on drugs and changing dosage. Once you settle into one dose, it'll get better...at least it did for me.

 

[Tan]

Thanks guys it means alot to have others to talk with that understand!

I go to my normal GP at noon today so will see what they have to say. Will also get my levels checked to be on the safe side. I woke up this morning dry reaching but I also had heaps of flame down the back of my throat. But I also had the runs this morning. Im not sure if I should suggest reducing my 6mp dose back down and see how I go, I would prefer not to go back on steriods but if I have to to get better then I will.

Thanks Fenway, I just feel like Im always tired and need to sleep at the moment. I have been sleeping most the day then still sleep well at night. I really hope that settles down then once I adjust to the new dosage.

Thanks again guys just really emtional at the moment hopefully start to get better soon. Will keep you updated with how I go at the docs.

 

[Peaches]

Good luck Tanya - love the new avatar BTW :O) We have such a lovely bunch of ladies on this forum......

 

[Tan]

Thanks Peaches... it took me forever to work out how to put my photo up! Its a bit fuzzy from having to compress the photo down but at least everyone can now see who I am now. I thinks its nice to be able to put a face to a name. Everyone is so lovely on this forum

 

[Peaches]

Ahhh....well - if you are interested, we have a thread called "Face behind the Post". We put our pics out there so people can see who they are talking to. It is fun sifting through and seeing everyone. We got a little off topic in there today....but have a look:

http://www.crohnsforum.com/showthread.php?t=6324

Oh - and it is in the lounge - so you would need to email Dingbat or Mikeyarmo for the password.....

 

[Tan]

Thanks Peaches.. might have gotten off topic but can only help take my mind off everything! Will email them to find out password to check everyone out.

Got back from the docs didn't get to see my normal gp, anyway he has put me on other medication for sinus as he said the med I was on can cause issues with the gut as they aren't great so he put me on ones that are better on the gut and also better for sinus! I also did heaps of blood tests to check my levels, B12 etc so hopefully get those back in a few days. He said that if Im still not feeling better by the time my bloods get back then maybe think about reducing my 6mp back down the lower dose to see how I feel if after that still nothing then probably looking at another flare so will have to consider pred again. Fingers cross it all clears up once the meds are adjusted. I am feeling a little better this arvo not as tired and don't have nausea as much so hopefully that continues.

 

[shazamataz]

Glad you are feeling a bit better Tanya Hopefully you can get it all sorted and be back to your normal cheerful self!

 

[Tan]

Thanks Shaz, how are you feeling now??

I actually got worse again after I did the last post Should have known once you get excited that you might be feeling better bam you get hit with another wave! I decided to eat lunch to try and get some food into me... big mistake afterwards I felt 10 times worse, I struggled all afternoon to keep it down but thankfully managed too, just keep dry reaching. I ended up sleeping on the couch most of the afternoon just to by time till Jamie got home from work. He is cooking me steamed vegies for dinner I normally can tolerate them so will see how I go... Its a struggle to stay your cheery happy self feeling like this, hopefully will start to get better soon.. at least I have a plan in place now so eventually something has gotta start to work.

 

[Peaches]

Sorry buddy! I'm glad they switched your meds - maybe that was causing a lot of it. Unfortunately that may not clear up your gut issues immediately if that was it. I'd still try and eat some yogurt with probiotics to replace stuff that the antibiotics effected. I always ask my GI nurse if I should take any particular antibiotic before I start as she can always lead me in the right direction as to whether or not it will effect my gut in a negative way.

 

[PrincessPeach]

Hey wow I didn't know that 6mP made you feel tired? I always thought it was just me? Anyways I tried Immuran and it gave me horrible headaches but 6mp seems to work~ But I dunno I know you are feeling bad now but from what I gather from my specialist you need to stay on 6mp for at least a month if not more to start to see an effect? I guess its all up to YOUR doc but that is what we're doing for me now is just waiting?
Anyways hopefully you can get something worked out~ maybe try having an ensure day to let whatevers in there clear out? sometimes that helps me?

 

[Tan]

Thanks guys, yeah I want to give the 6mp a go so would prefer not to reduce and it was only a GP not my usual GI he is away on holidays at the moment so cant get ahold of him to confirm what he would like to do. Its very frustrating as its all trial and error but will get there eventually... gotta stay positive!
Thanks for all the tips guys.

 

[Tan]

Ok well I think Im starting to get on top of it all!! Last couple of days started to feel better and have started eating again.. Yah!! Today Im a bit slow but could be because of new years last night and being a bit tired today. Not that we did much stayed at home with some good friends had dinner, played the wii and watched the fireworks on TV at midnight! But still made it too midnight so was a big one for me at the moment. So I have my fingers and toes crossed that Im on the up and hoping that it was just the antiboitics that were causeing my crohn symptoms.

Happy New Year Everyone... hope 2010 is your year of Health and Remission!

 

[Peaches]

*Excellent* Tan - what a great way to start the New Year eh??