Im new and need some advice please

[natgl]

Hi,

Im new to this forum. Ive decided to join because I to suffer from ... well.. what we think is Chrons or Ulcerative Colitis. I am 24 years old female, have been suffering intestinal problems for many years. Doctors either would say its all in my head or its IBS. As the years went by things started to get worst. I have a very low immune system, Ive had many bronchitis, ear infections... when younger which resulted in me taking lots of antibiotics. Ive had my wisdom teeth pulled out more antibiotics, have a toe infection (ingrown toe nail), more antibiotics and this is when things started to get out of hand. I ended up getting C Difficile after taking Clyndamicin for my ingrown toenail infection. Since then, my problems have worsen. Ive had my first colonoscopy a year ago and all they could find was a little inflamation but nothing to worry about they say. For 1 1/2 years Ive been bleeding, Im anemic (taking iron supplements) and just recently, 1 month ago went for a rectoscopy and they diagnosed me with "proctitis" , an inflammation of the rectum. Let me tell you Im still bleeding and Im in horrible pain, it hurts , it burns and like that isnt enough often I get bouts of what I would call "urinating from my but". Seriously its watery! And when this happends its not controllable I need a toilet now. I did suspect having diarreah but not watery like this. I think Im going through a big flare up right now. Been eating Jello and broth for 2 days now. Im waiting for the call to get another colonoscopy in about 2-3 weeks as the doctor thinks I have Chrons or UC and wants to confirm it. Last time they didnt fine anything. I cant even hold a job, im stressed because financially im having trouble, my health has put a tole on me, just today I took 4 imodiums cuz I had an interview for a job. I lose about 1/2 cup of blood a day its been 1 1/2 years. I want to hear the words out of the doctors mouth that I have Chrons just so I can put the finger on my problem after all these years of suffering but in another way, I really dont want to know because reading all of this, the meds, the surgery, not living a normal life basicly scares me. I feel hopeless alot of the times. What I want to know, because Im new to this and really think my proctitis is acting up like you have no idea "or maybe you do", what can I eat when I am flaring up? Living on a liquid diet will not bulk my stool and will just cause more diarreah? I need some help, some advice because Im really freaking out! Now... if I do get this job, how do I go about telling my employer , when should I tell my employer that I have chrons? :depressed:

Thanks
Natacha

 

[beth]

Sounds to me like you should sort out your medical problems first and then the employment. Or at least get to a stable point.

When to tell them would be tricky. Some job applications here in the UK ask for 'medical or health issues that might effect your employment' and if asked I'd stick it in there. Otherwise if you think you can hold the job... well you probably dont need to be so upfront about it... Hmmm. Does that actually help

Anyway. :welcome:

PS: it's spelt Crohn's, after Mr Crohn. Hey it could be worse, it could be called Leśniowski disease! :ylol2:

 

[RafHam]

I now it's tough because of the financial issues, but i agree with beth about stablising the crohns first - especially since you'll be starting a new job. Though having said that, I have gone through periods when I was flaring badly where I wouldn't eat anything all day so I could get through work. Though I don't think that's a long term option.

As far as telling the boss, I just accepted a job where I was totally open at every opportunity in the interview process. First it helps explain gaps in employment and study. Also they'll at least know that you have a reasonable excuse when you need to go a bit easy.

I guess you just have to make a judgement call as to whether you think it'll hurt your chances. I'd let them know if you possibly can - it'll make your life a lot easier. Best of luck with it, I know it can be tough when your at a low point.

 

[forum contributor]

Hi, Natacha.
Welcome to the forum!
I have some kind of Colitis, but they're not sure what kind yet.
I'm also anemic (lost 3 units of blood over 1.5 years, already got 2 back!).
Also, I'm looking for a new job! It's tough and scary. I had an interview yesterday and just got word that they want to bring me back on Friday for a second interview. It's especially nervewracking because I've worked for the same company for the last 12 years (they know all about my stomach issues). Leaving this comfort zone is terrifying.
However, I'm trying my best to get my stomach in some kind of order before I start a new job. I've been very proactive in my treatment.
I wish you the best of luck. Make sure you keep us in the loop

 

[natgl]

Thank you for your replies. I do agree how I should I should try to control whatever I have first and then concentrate on a job, although thing is I do need a job because I cant cant my bills if I dont. Im in Canada and I have worked 5 years by contract through placement agencies and its hard because when your sick you dont have paid sick days or paid leave to see doctor or benefits. The job in which I had an interview yesterday is in the Federal Government and you get sick leave, paid time off for medical appointments, benefits...etc. Ive usually always told my employers when they would come to me and ask me why Ive been missing so much, so I let them know. Ive been very lucky so far Ive had 2 managers that were very understanding and one in which her husband has Crohns so she could understand where Im coming from. I guess if I complain too much that Im not feeling well and they see that Im running to the washroom alot , then I can tell them whats going on. I just didnt want to ruin my chances in getting a permanent job, once I sign the papers I figure Im good to go. I hope! Anyway... on another note, I do need your help. Have you ever had "proctitis" and how bad were your symptoms and how long did it last? I have severe diarreah (pee from my ass) should I say. I would like to know what is acceptable to eat when your flaring up pretty bad? And will trying to eat well to reduce the flare cause negative results when I get my colonoscopy in a few weeks? Ive been eating jell-o and broth for the past 2 days and being anemic (taking iron) I feel very weak and like I need to eat some protein or something. I was wondering is the BRAT diet ok? Can I eat chicken noodle soup or only clear broth? and how long do you go on this liquid diet? If I eat liquid, I will continue having diarreah

 

[natgl]

I so so fed up right now. The waiting list is just painful. I called the hospital this morning and asked when I should be scheduled for my 2nd colonoscopy as I was diagnosed with proctitis and Im told it wont be until probably oct/nov. Ive been left without treatment, in pain, Im feeling so week/faint from lack of energy, not eating very much (mostly liquid diet) and being anemic, losing so much blood and Im left like this for months just going down hill as days go by. Oh my!!! And if I go to the ER they will make me wait 16 hours like last time. Arrrg Im so angry right now and dont know what to do. :depressed:

 

[Lisa5326]

I am so sorry you are feeling bad and no real help to get you out of this.
I can't really help with your questions unfortunately but I wanted to tell you to try and hang tight and try to keep your chin up!

Is there any cancellation list you can get on for the colonoscopy?

As far as what to eat when you are flaring that goes with what you can eat without making you feel worse. Some do the ensure drinks, chicken broth... I love mashed potatoes when I feel like crap. I keep a food/pain diary so I can keep track of what makes me feel bad.
Do you have any pain meds--help with pain obviously and slow your guts down a bit--works for me. Just try to get something in you to keep up your energy. I'm sorry I'm not much help!
Take care Natacha!

 

[natgl]

I am so sorry you are feeling bad and no real help to get you out of this.
I can't really help with your questions unfortunately but I wanted to tell you to try and hang tight and try to keep your chin up!

Is there any cancellation list you can get on for the colonoscopy?

As far as what to eat when you are flaring that goes with what you can eat without making you feel worse. Some do the ensure drinks, chicken broth... I love mashed potatoes when I feel like crap. I keep a food/pain diary so I can keep track of what makes me feel bad.
Do you have any pain meds--help with pain obviously and slow your guts down a bit--works for me. Just try to get something in you to keep up your energy. I'm sorry I'm not much help!
Take care Natacha!

what scares me is that if I change my diet now, go on a mostly liquid diet (I will end up fainting) as I am close to fainting now, no energy whatsoevr. But what I fear is that if I try to eat better to help heal my inflammation, by the time I get that colonoscopy, I will have healed and they wont find anything. This happend first time around!

Thanks for your help guys ...

 

[natgl]

what other foods seem to help you when your in flare guys?
And... when you start to feel better what are you able to eat? and what cant you eat, whats makes your symptoms worst?

 

[mharvey90]

Honestly, what I've noticed through 10 years old experience (and I'm only 19 years old) with my Crohn's, is that during a flare up, changing my eating habits neither helps or harms me. If you're in a flare up, you're gonna be in a flare up either way and changing your eating habits probably won't help ( for me anyways.) Of course spicy foods and foods known to cause diarrhea are the only things I stay away from. And I can totally relate to how you feel, over the past few months during this flareup, my social life has basically been destroyed, because for people that don't have Crohn's or something similar, simply don't understand what it's like and how hard it can really be to function. And as for concern in your future employment, I have the same concerns regarding college. During the last two months of my second semester of college (freshman year) in march and april, I was so sick that I missed a week of classes and it set me sooo far behind that I came very close to having no choice but to drop the semester on medical leave! (I am a Biomedical Sciences major at a University, which is extremely competitive and missing any classes at all sets you behind completely.) I've been on asacol, pentasa, remicade, and prednisone, and the latter two mentioned have helped me on a temporary basis only, and I'm pretty much back to where I began. So I totally know how you feel, very frustrating! But this is a great place to come when you feel like that, because there are so many other people who are going through the same thing as you are, and it really helps to know that.