Hi there . . .first time poster

[lovetotravel]

Hello there everyone,

I have spent hours on here for the last few days reading posts and am bushed!!

I just wanted to say thanks and I cant believe it has taken be THIS long to find this site I have kind of just been going along on my own steam, but it looks like a great place for support. So nice to see.

I have had crohn's for 7 years now (well official diagnosis was 2001, but had "something" for a while before that, couple of years of running around doing tests and such with a GP who was clueless (even after I had a fistula in my butt, which they thought was something else), took her almost 2 years to get me a GI referral). I have run the gammot of meds and treatments, from homeopathic/naturopathic to probiotics, specific carb diet, Pentasa, Budesonide, Remicade, Imuran and Humira, both of which I am VERY allergic to, You name it I have pretty much taken it or tried it. Some I've even forgotten about till I saw them mentioned on here and thought, "Oh yeah I tried that !" I have been on Methotrexate since January 2008 and it is going ok, not so hot recently but then I have had a wicked cold and upset thing s a bit. My GI and I have discussed resectioning surgery, but I have staved it off for a while now as the chances of doing it again jump if you have it done once. Have had dialatation to stretch narrowings, and have had fewer obstructions since and less pain.

My hubby actually found this forum as we were looking for alternatives or anything really that works. I know how individual it is.

My pattern seems to be that things work for about 1 1/2 - 2 years then stop. Meds or diet or whatever it is. My GI is AMAZING and I am so lucky to have him, he has really helped me a lot. I have had him for about 5 years now. He says that our bodies become accustomed to the drugs and their effect wears off. Pity for me that it seems to be the case with diet too.

I have not read everything on this amazing forum, way too vast. But I have found that my body seems to like warmer climates, now whether this is cause I find myself there on holiday (less stress, nice weather etc) and I am not working, just relaxing, or whether it is actually the weather, different bacteria etc, I dont know. Just that after about 3 days in Carribbean or Mexico/Central America, I can pretty much eat what I want and feel way better.

I do find the best thing is to try to live as stress free as possible (good luck!) and am struggling/toying with the idea of trying a year part time work. I am lucky in that my job wont really be affected and I can return after a year back to full time. It is a big financial deal to cut your salary in half, but if it makes you healthier, then isn't it worth it? So I am still trying to decide. Parents and colleagues dont really understand the crohn's (parents are in another country, far away so they are partly forgiven, as I try not to freak them out with too much info on drugs and procedures).

I have HAD to stop work completely a few times and after 3 months or so have felt way better (then gone right back to work) so I have chatted to my GI about perhaps trying a year at half time to see what it does for me. Got to weigh it out to see if we can do it financially.

anyway, I could go on forever about my history etc. Hope this gives a clear picture of where I am at, without too much else. WOW this is a long post already!

Thanks in advance for the advice and support
hugs

 

[butt-eze]

Welcome to the club! Not exactly a membership people pine for but all the same you're a member now.
I hope you find some answers and support here. I love the people on this forum!

Amy

 

[lovetotravel]

Thanks for your kind welcome. I have already found out about some new things, hoping people can help me out with my questions about the worms.

take care
H

 

[teeny5]

Hi lovetotravel, I have also been questioning my job lately. I am newly diagnosed, but I have found that when I am not at work or work less I am better. When I put in full speed at my job I get sicker and sicker until I finally take a week off just to rest. I am salary so I often work long days. The fatigue and the stress just seems to wipe me out.

Does anyone else have the same issues with work? I would love to say that I can do it all, but recently have found I only get sicker. I like my job but it is very go, go, go. I am on my feet all day and usually barely have time to go to the restroom...well now if I gotta go, I really gotta go!

Hard to accept I might have to step down.

 

[Babe123]

although i dont have a full time job. i find that if i have too much to do ifeel alot worse and just have to rest. college makes me feel ill because it is so stressfull... maybe not as stressful as a full time job but its hard work and none of my classrooms are near the toilets

if work is making you bad you cant keep working
x

 

[lovetotravel]

yeah, I really love my job and really want to be there everyday but what tends to happen is if I feel crappy and keep working through it thinking it will get better, then eventually I need a week off. If I dont take the week then it gets so bad I have ended up twice now being forced by my husband and GI to take 2 months off then go back part time.( numerous obstructions and the threat of surgery have made me take time off. Then I start feeling better and wonder why I do it in the first place, hence really rethinking part time)

My mind can go go go and does not feel stressed but I have to learn to read my body sooner as by the time it starts reacting to the stress it is too late. I wonder if a day or 2 every two weeks as a preventative would work? ( I know someone with Lupis who does this with success) Sometimes I think that if there are things to do that might make it worse?

anyone else find time off or part time a help? I am lucky in that my employer (not boss) is very understanding about health issues and so going down to part time would be ok as my job would be safe, but my boss and colleagues just dont understand crohn's at all. I work damn hard and get the feeling they think I am taking a free ride when I go off sick. I dont get paid when I am sick ! No one has actually said anything but I get comments like "oh it must be nice to have some time off" I want to reply yeah the 20 trips to the washroom a day to poop my brains out are fantastic and the pain is an added bonus too.

sorry dont want to be too negative, it is just people dont get it.

 

[teeny5]

People totally don't get it! I am off work for a month right now and everyone I just know will be like "did you enjoy your time off?" Um, the answer is not really! When is going to the bathroom all day and having stomach cramping enjoyable? Nevermind the fatigue and I can't even remember when I slept a full night!

Anyway...just had to vent a little.

 

[Agent X20]

Couldn't agree more about the work thing, and it's encouraging that it's not just me. The symptoms are just so much easier when I'm not at work. Recently had 7 weeks off because I broke my ankle (that's another story) but I've felt much better as a result (apart from the ankle) and can only conlude that the stress of work makes the symptoms worse. I now work 4 days a week and am planning to go down to 3 days...and the organisation is generally quite understanding (so far). My latest boss is an OK guy, but he's never had a day's illness in his life, and when I go back after a Chrohns attack, he says: "Are you feeling better now?". The answer is "not really" but I can't stay off forever, so I have to go back and work at half-speed until things pick up again. He means well, but I just hate being asked if I feel well.
Ooops... a bit of a rant... I think I'll go and lie down for a while!