Hello everyone

[Panda33]

I just wanted to give a quick Hello. I am so excited about joining this forum and learning more about Crohn's and how to live with it. I was diagnosed after a 2week hospital stay in July. I have been sick since Dec 2011 and was initially diagnosed with UC in May but continued to get sicker even on meds. I ended up with pneumonia, fluid around the heart, huge ulcer in throat so I wasn't eating or drinking, and of course the fatigue, weakness, etc etc. these symptoms are what lead to me being hospitalized.
So I am a virgin Crohner!!! Scary, confused, in the dark are only a few words to describe this diagnosis. I am now on prednisone and Imuran (150mg). The Imuran scares me because of the possible side effects. The prednisone just sucks! Weight gain, always hungry, can't sleep, shaky. But..it'd rather be well so I go along with it.
Anyways thanks for letting me introduce myself, and I hope to learn so much from all of you here.
Take care

 

[David]

Hi Panda and welcome

Wow, you've had some really scary complications Did they feel the fluid around your heart was due to the Crohn's or a further complication of the infection you had?

We're here for you!

*hugs*

 

[Angrybird]

Hello and welcome to the forum :bigwave:

I am sorry to hear you have had such a tough time of it. How long have you been on the Imuran? What dose of the pred are you now on? How is the tum now?

Glad you have decided to join, there is lots of helpful info and support here for you.

AB
xx

 

[Panda33]

Thanks for the warm welcome! David my GI said that she believed the fluid around my heart was from the Crohn's.
Angrybird..I have now been on Imuran for a month. I was increased to 150mg last wednesday from 100mg. I am currently down to 5 (5mg) prednisone pills that I take with breakfast. I started at 8 and I am slowly tapering down. My GI said that we won't know if I am in remission yet because the prednisone covers it up. It won't be until I am down to at least 2 pills will we really know if the Imuran is working. So I have my fingers crossed because I don't want to be that sick again. I am a single mom of 2 and work 2 jobs do it was rough to say the least Lol

 

[Amanda D]

Hi Panda33,
You made a good choice joining the forum, there are a lot of insightful folks and tons of support. I too worry about the side effects of drugs, I started prednisone and imuran in July. But like you, I never want to feel this ill again and will do just about anything to make sure I am not! I guess I figure that the doctors see the risks as outweighing what would happen if we didn't take the drugs.
You are really amazing to work as much as you do--outside of the home and inside with kids! Hang in there

 

[Amber Caitlin]

Hi Panda, nice to meet u. I am new here too. I had Crohn's for 12 yrs then had an illeostomy op 12 yrs ago, now I am suffering from Crohn's symptoms. At the moment, the pain in my back is really bad - it's like a muscle pain. I remember that from the 1st time. Like yourself Panda33, I was on Prednisone when I was 1st diagnosed. I was also on Asacol. They helped a little but not a lot. Pred seemed to calm things down more. Currently for my Crohn's backache I am trying pain relief tabs (Codis 500), Audmonal 60mg capsules (Alverine Citrate), Pain Relief Gel eg Ibupofen Gel, and a good old hot water bottle at my back. On the days when 'loose' is the ultimate word and my illeo bag fills up inside 10 min, I take 2 immodium - smtimes 2 sorts it out (along with eating starchy stuff eg Irish soda bread, chips, cake) smtimes it takes 4 immodium plus starchy food, to work. If any1 could suggest anything else I can do for the muscle aches associated with Crohn's/illeostomy I would b most grateful. Many thanks. Amber

 

[Angrybird]

Fingers crossed the Imuran will do the trick for you, it can take up to 12 weeks to fully kick in so don't be disheartened if you get a couple of little grumbles with the tum when the taper continues. You should be on regular bloods so the docs will be able to tell if this is doing its job.

 

[michaelearnest]

Hello Panda - mine only took about a month to kick in. I have been on 50mg for a year now. Best of luck to you.

 

[EmilyElizabeth]

Hi Panda, I'm also a virgin crohner! haha, good one by the way. I'm going on Imuran soon and am scared like you are. This forum is a great source of information and support. You sound very busy! Which is good because you have lots to distract you. Try to take some time for yourself too whenever you can, it helps to recharge. xo

 

[Panda33]

I definitely have learned to listen to my body, not ignore symptoms, and take time for me! I have been off work since beginning of July on a medical leave. This time off has been a blessing. I head back to work on Monday so I am hoping it goes well balancing everything again. Although I am still not 100% better I am in far better shape than I have been in a long time. I do get fatigued quite easily though, which is foreign for me considering before bei sick I was very active. Now I find myself shaking (legs and hands) by the end of a semi-busy day.

 

[deb123]

Hi Panda,

Im also a Mum of two girls and suffer from crohns. Its tough when you're ill or not 100% yourself, but i would say try and take time for yourself and rest, otherwise you can make yourself run down, and thats when Crohns has a right old time. I would also suggest the your Dr runs some blood tests for vitamin deficiency. I have been deficient in Iron, B12, and Vitamin D, it really does help with the aches and tiredness when these are at normal levels.

 

[Panda33]

I have had my levels done. I am on iron (with vitamin C) 2x per day. And I am on 1000iu of vitamin d.

 

[David]

What was your vitamin D level out of curiosity?

 

[Panda33]

I have no idea what my vitamin d level was. I see my GP tomorrow so I will ask. I know they tested my B12 but wasn't told to take that supplement so I am assuming that was at an okay level. I know my iron was extremely low.

 

[David]

As long as you're asking about the vitamin D, ask them about the B12 as well. We can provide additional insight if you give us the actual level.

 

[Thermo]

If any1 could suggest anything else I can do for the muscle aches associated with Crohn's/illeostomy I would b most grateful. Many thanks. Amber

Where is it located at?

 

[Thermo]

Now I find myself shaking (legs and hands) by the end of a semi-busy day.

This is most likely due to the steroids, I shake like I have Parkinson's while on steroids. It is bad enough that people notice and say something about it to me. It should go away once you are off them.