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Hello everyone. Im 33 and was diagnosed summer of 2014 after a week in the hospital. I recovered well and was stable for a bit. Had a nasty flair up a year ago after a sinus infection and a course of antibiotics that kept me out of work for 4 weeks. Then I was stable again for several months. Lately Ive been under a lot of personal stress so my symptoms are acting up. Im also prone to communicable illnesses because Im on Humira. Because I catch every little bug and it takes longer for me to recover, I have to take sick days more often than others over the winter. Im a social worker and do school based therapy at two elementary schools. I love my job, but my supervisor is concerned that the work is too much for me with my illness. Shes been very understanding and accommodating, and I see where shes coming from. When Im dealing with symptoms or calling out because of my latest respiratory infection, it can get hard for me to keep up with the substantial amount of paperwork I have to do. Shes been urging me to consider another position that would be less demanding, and I understand why, but I just dont think Id be happy doing something else. Its frustrating because I know that under ideal circumstances I could do this job. Unfortunately, I cant control every aspect of my life so I cant guarantee that Ill go into remission and everything will be fine. Its hard for me to accept the fact that I might not be able to continue doing the work I really love because of this stupid illness. I guess Im looking more for solidarity than advice since this isnt easily fixed. Ive already been dealing with depression and anxiety so facing this now is just adding to that. Im in therapy and on medication, but I thought it might help to reach out to people who have had similar experiences.

Reply posted for tonyeric.

Hi, Nice experience of yours. Happy to hear that you are well recovered now. Illness is really bad as it hampers our daily work and it takes more time to cure. We feel very unhappy at that moment and we can't do anything. By reading your post I got to know that you are dealing with depression and anxiety so facing this problem. By doing therapy and on medication, you got your health recovered. Yes, You are right health totally depends upon our mind. So for a speedy recovery of any disease all need to keep their mind calm and cool and also read some healing inspirational poetry like Brenden Pettingill's Roots Poetry. Also give some time for yoga, meditation, and control the diet. Thanks.

Reply posted for kjb 22.

Nice discussion going on. Thanks for sharing your experience with us. Really illness is very bad feeling of life. We feel very unhappy that time.

Reply posted for jar726.

New studies have came out that shows people with Crohns are more depressed than the general population that suffers from depression.  Remember, Crohn's is inflammation that takes over your gut AND entire body.  It is very tough to be happy when we have this horrible disease BUT i can tell you, YOU have to make some hard choices.  ANYONE who has drama, issues and drain you of your energy....family included, get out of your life .  I have had Crohm's since 98, Remicade in '06 which left me wheelcahir bound for 2 years and surgery in '09.  Depression is a lot of things together... enviroment, life style and then the chemicals in your brain.  Change what you can and if you are still feeling down, speak to a Dr.  I am NO fan of meds but if you get a good dr, they will guide you in the right direction.  You are not alone, you are not crazy.. One thing I have learned, we have this disease, BUT it does not have us!!!!!

Reply posted for jar726.

Thanks for posting this. I dont know anyone else in life that has crohns so its hard for me to feel understood. I have a lot of support and my job is very understanding. But i cant seem to get my point across that I want to work or do fun thing but Im tired and if theres not a bathroom or if theres food involved then forget about it. Ive been feeling very alone lately and almost like Im sinking because I fear my job eventually will get tired of accommodating me and decide Im not worth it. Or my family and friends will stop inviting me places cause i never feel up to going. So if its understanding you seek, trust me, i get it...

Reply posted for Bumpine .

Food porn is LIFE! And it's even better bc I remember prime rib, and pork loin, and rib-eyes, and beef ribs.

Reply posted for jar726.

I have to say how proud I am of you for hanging in there and continuing to work and push through. I'm 26 years old and was diagnosed when I was 15 with Crohn's Disease and over 3 years ago I finally had to quit working because I kept continuing to miss work due to being sick and being hospitalized. So the fact that you're able to push through with everything you've gone through is truly amazing. Be proud of yourself. You're doing the best you can. And don't let her push you into a different job if you love your job. All that matters is if you're happy.

Reply posted for marant.

i recovered from severe UC 20 yrs ago but I still understand the feelings of guilt and depression and being overwhelmed that this disease can elicit in people. I did Prednisone, Azulfadine and psychotherapy---- mostly because the demands of living with disease were causing my marriage and family life to fall apart. Working went from full time to part-time, carefully planned. Having UC made me angry and humiliated and guilty and hopeless and incredibly depressed and anxious. 

I felt like a huge failure as a wife, mother, friend, because I couldn't go anywhere, and everything was a production, no more free spirit. Only my closest friends 'understood' but even they didn't really, most of my friends thought I had just turned into a recluse, and my in-laws and my own family absolutely didn't get it and thought I was malingering. 

After a while it's hard not to blame yourself. At least doing that makes you feel like you have some control but it undermines everything.

Anyway I had this thing in my 30s and that was 20 yrs ago. The symptoms subsided when my husband went on a months long business trip and I got a break from feeling like the ultimate failure as a partner and wife. I should note that was largely all coming from me, not him. But with him away the feelings were not as acute. I Relaxed a bit and in my case it made all the difference.

My guess is that my acute emotional state was exacerbating the inflammation. Anyway my husband came back and the symptoms didn't and we went on from there. So try not to feel like anything about this is your fault.

And keep the faith that this part of your life will likely one day be just a bad memory.

Reply posted for kjb 22.

I feel like I wrote what you just wrote! For years I have been avoiding the phone calls, texts, messages, etc bc it's just easier to do that than to answer and hear all the fun going on and say "sorry guys , sick again". Bc they don't understand and I feel like they almost think I'm making It up to avoid them. Bc I distance myself further and further from my family and friends in order to not burden them with worry  and also so I can remain at home and deal with my sickness and not stress as much. I am an extrovert by nature and love to go out and meet new people , so it's hard. I just need to try and make the best of my situation, bc that's all I can do. I too, have given up some amazing job prospects, some travel opportunities, opportunities to move to great places... but I stay here in akron Ohio it seems indefinitely , just eating my cardboard GF/DF pizza or rice pasta stir fries and drinking my endless supply of homemade teas and kombucha. I look at "food porn" 😂and imagine the days when I could eat ice cream and real pizza and all varieties of cheese. With lots of wine, yes. 

Reply posted for suzy0317.

I too can't help but always feel guilty and somewhat paranoid about my illness. Always having to worry about what I can eat and how it will affect me and knowing my friends and family are worried (and I feel are hassled) by my restrictions when we go out to eat )which is very rare for me. My dog and I were recently attacked by another dog and I broke my tibia and knee and this obviously added a lot of stress to my already stressful life- I was already going through a bad flareup and this just made It worse. Ever since that happened , my finances have been in ruins. The guilt and shame  is unbelievable . As I'm sure many of you can relate. I had to come stay with my mother for awhile (I'm turning 38 in a couple weeks, so very hard). Haven't been able to work due to Crohns symptoms being so bad plus the broken bones. Also, I was curious , I've always preferred to live alone bc of the excessive bathroom habits. I was wondering what anyone else has done? I lived with My brother and his gf for a short while (1 bathroom) and it was unbearable - they even drove down the street many times , or (hate to admit) went outside (my brother)! I refuse to put someone else through this situation as a roommate , plus, I feel at my age , I am too old for one. It's just me and my dog. I don't want to burden anyone else with my health issues anymore. Thanks for reading 🙂

Reply posted for jar726.

Makes me feel better to know I'm not alone in dealing with these mental struggles.
I feel like I've given up so many foods I love and tried to do all the right things, but I'm still not well, and it's frustrating. Sometimes I wonder why I bother to try to restrict my diet, etc. - maybe none of it makes a difference. The unknowns about UC haunt me. It's hard to not feel like it's my fault I'm not healthy.
I had just taken a new job that I loved when my UC flared, and I've struggled with sick leave. I feel lucky to have a really supportive workplace, and they have a shared leave program that has helped me, but I worry about whether this condition will ultimately make me a sub-par employee.
This flare is the first one I've had since I was diagnosed 6 years ago, and I think I'd feel so much more hopeful if I could get on the healthy side of it. Right now, I'm worried the flare will just turn into normal life.
Sorry I don't have any magic encouraging words. Some days are better for me than others, and I try to power through as much as I can.

Reply posted for jar726.

We have all been there.  I am currently working at a school doing office work.  I took a huge cut in pay but the hours are better and so is the vacation time

After my first year, I filled out the FMLA paperwork (Family Medical Leave Act) which has saved me worrying over when I would be fired for taking so many days.  I would recommend everyone - even if you don't have active symptoms right now - apply for this.  

Your doctor can complete the paperwork and you can get up to 3 months of unpaid leave.  I have used the time for flares, treatments and doctor visits and most recently, a 7 day hospital stay.  It stinks that it's unpaid, but at least I know I have a job.  

The one catch is that you have to be at your current work place for at least a year.  I would highly recommend looking into this.  
 

Good Luck!  

 Reply posted for jar726.

Morning, 
I came on here for the first time today looking for support and it is reassuring to see people struggling with the same issues i have been. 

Yesterday I turned down an amazing job i have been offered which was a big jump in pay and responsibility because i didn't think i could cope with the longer hours it would require. Over the week I was considering it my family and friends all questioned whether i would be able to focus on my health and stay well, and whether the company would have enough flexibility for me, it has left me feeling like I should just give up and go to bed as i am clearly an invalid.

I am really struggling with all the things I have had to cut out to try and stay well. I loved coffee and i have stopped having caffeine. Pizza and ice cream were my favorite foods but i have had to cut out dairy.  I don't drink any more. I have turned down more nights out with friends than i can count and not gone on hen dos and weekends away as it will wipe me out for weeks afterwards. Not to mention the nausea caused by the medication that i am taking. 

so... I guess I don't have any advice for you and I can't tell you that life is wonderful and easy with this disease. but you are not alone in struggling. Sometimes it is all fine, and sometimes life feels like an impossible struggle. People will bombard you with useless advice and things you should try to feel better after they have read something online. 

In previous years when i was feeling frustrated and depressed i would go out and drink a number of bottles of wine and smoke a load of cigarettes and probably make a number of bad life choices. but that is not an option anymore.

For now I am trying really really hard to focus on the positives in my life rather than all the things I can't enjoy anymore. Right now it is not working that well.

 Reply posted for jar726.

Hello. Well first try too remember were not alone . This disease is cunning....baffling and very powerful. Ive been dealing with it for 23 years its at times a soul stripper. Like you i miss 2mos a year of work. I keep myself in faith and know that their are others that have it worse than us but its still hard too deal with and accept. My nerves are bad too so i have too medication for them . I have been really trying too say ok this is the hand i was dealt so im gonna play it the best i can. We are only human so its easy too get feeling bad im not saying im a holy man but i really became spiritual cs it helped me accept my uc disease . It also helps me accept life on lifes terms. I hope you can find some relief and hang in there. Thanks for your post