Need support

[minky]

Hi all, I am newly diagnosed with crohns disease. I have been sick and having frequent flares of D for the past 4 years. Minus a gallbladder and 3 colonoscopies later ( was always told IBS) I was diagnosed with crohns a few weeks ago. I was started on pentasa straight away. My story is that I work fulltime but when I started the pentasa I was feeling awful sick and was so tired and all of that. I went to the doc and she prescribed protium 40 to help with the burning feelign from acid and nauseau and yes it has helped big time. She signed me off work for 1m which is up next week to get myself well again as I was anemiac as well. Now I am due to the doc again tomorrow but I am not up for returnign to work. Since I was off both dd (13m) and I got swine flu so I am exhausted again after that and I still have D and loose motions. I dont know if everyone is this way but one min I would feel fine and the next I would get a pain and I literally only have 3 min to get to a loo to go. Its awful, its really getting me down this business. I did a food intollerance test adn aparantly I am intollerant to cows milk, wheat, soya and corn so a lot of foods out. Maybe this is why things are not improving etc but I feel I need to see a dietatian around this to help me out. I also have developed panic and anxiety for leaving home due to "getting the urge to go" as I have to go now. I no longer drive to towns or cities and hardly leave my house to be honest which is also going to impact on my family life and husband. Luckily my husband is v understanding and I am tryin to keep positive and think that 2010 will be my year once I get my meds and diet right. In the meantime thou what am I going to do about work - I need to work to pay bills the other side of the coin is I'm physically not able to at the moment so god am at a loss here. Any advice or words of wisdom kindly welcome. Thanks for reading.

 

[Fog Ducker]

I have been there, you dont want to be anywhere more than a few step from the bathroom, but you have to, so it is stressing you out and making it worse!

I found out that the stress of it all is the worst part. I know I go through ups and down with my moods and my health always seems to follow suit. Its a viscious cycle. I sarted to get down and that made my guts hurt, and it kept getting worse so I took time off work, and that stressed me out cause I wasnt working and in turn didnt start feeling better. Which stressed me out even more. The closer it got to my return to work the worse I felt.

What I m trying to tell you, is dont let stuff get you down, try to loose all of the stress you can because it only makes it worse.

I hope you start to feel better soon.

 

[Peaches]

Hi Minky. We can all empathize with you on this one I think. I too have gone through periods where I don't want to leave the house - it is just miserable. You were very correct about getting your meds and diet right - this is the best thing you can do for yourself. If you can get the disease under better control - it just makes things better all the way around. Sometimes that can be difficult to do - and I hate to hear your struggle! I think if you can get a dietician that would be great. Sometimes they are helpful, sometimes not so much. You can search the forum for diet information, there should be lots of it on here as we discuss it often. I hope you start feeling better soon - we are all here to help!

 

[Guestly]

I totally empathise with you Minky.

I too go through a whole series of evaluations before leaving the house, even if it's just to empty the bins.

I have been off work 3 weeks now, and am signed off until Jan, I only get 1 month sick pay, and since I have basically been incontinent since May I really can't envisage a return to work in the near future... in fact I just spent the day on the phone to social security enquiring about available benefits, cancelling all non-essential/luxury payments from my bank account, and cancelling the child care fo rmy kids...it's crazy. I keep thinking that my wonderful remission has got to be just around the corner, but no sign of it yet, and I am getting more financially stressed by the day!

Not much help from me I suppose - but feeling your pain totally!

Lishyloo x

 

[farm]

I know the feeling. I've been out of work only a few days now but it's going to hurt my wallet.
I learned over time to just go and try to enjoy things. Yeah, there will be emergencies and I have probably pooped in a lot of places you couldn't imagine; but ya gotta get out there!

 

[shazamataz]

Hi Minky, sorry to hear you are having a rough time. All you can do is do your best and don;t beat yourself up about it - it's not your fault you have been sick!

 

[CrohnieCarolyn]

Has anyone mentioned Remicade or any of the other Immunosuppressant drugs? A lot of people are having success with those...

 

[minky]

Hi guys, thanks so much for listening and all your support. I went to the doc this morn and they have taken me off the pentasa as it was causing an ulcer and I have gastritis as well so thats why I have been so sick. She has signed me off work for 2 weeks and with christmas coming up I am not back unti the new year. I am now being put on questran sachets 4 daily and my protium increased to 2 daily for a week and then antoher month. I got my gall bladder out a few years ago so they said the bile salts might work out. Anyone ever use these??

 

[farm]

I use Questran. If you can stand citric juices, mix it with orange juice!

 

[bruscar]

No never used those. . . . just wanted to say good luck to you with it all. . . . . .remember this will take as long as it takes,to settle down.

Hang in there

XX