New to the forum

So I was diagnosed at 10 and am now 22. I have dealt with Crohn's my whole life. Surgery at 12 (removed about a foot) then again at 20 (removed another food after bowel obstructed and then perforated). The second time I was in the hospital for 23 days, lost 15 pounds, dropped out of college, cancelled my study abroad trip, etc. It is one of the defining moments of my life. My wound took 6 months and weekly trips to the Wound Care Center at Piedmont to heal. A year later I had an elective surgery to remove some of the scar tissue. It was so bad you could tell in clothes and I couldn't wear a bathing suit at all.

I ended up graduating from college on time and moved back home to Atlanta. I've been with the same wealth management firm since the day after graduation and love my job. I have been on Humira for over 5 years (since before the perforation which according to my doctor was just a freak occurance). I take good care of myself with sleep and am trying to eat better. I am SO sick of the pain and the lack of energy. I think my only option left since I've been on everything is Cimzia. It took me a month to even get an appt with my GI which is SO frustrating...my appt is next week and I don't know what to tell him. I haven't had to stay home from work or quit, but this definitely is impacting my life and my relationships at this point. I just don't know if it's worth it to try yet another med that could make things even worse or run me out of options.

Over the last 5 years or so, lack of energy is more of a complaint than the pain really ever was. Recently the pain has been getting worse even though I've restrained my eating.

I don't know what I'm asking for or looking for here--I am NOT a forum type person haha but I guess I just need people who understand and maybe are in the same type situation. I want to have a career and a life and not have to plan every minute around how I will feel. Is there anyone else young and new to the working world struggling with this stuff? I don't think there's really any advice that can be given in my situation except remaining positive. Anyone able to prove me wrong?

UGH! Crohn's sucks.

Hello and welcome to the forum

How long has it been since up to date tests were done go see what is going on inside? When did the pain start and how far have you restricted your diet? One thing I would ask your doc is to have your vitamin levels checked, it is common to have deficiencies in this area especially if you have had part of your bowel removed and a low B12 for example could contribute to your fatigue.

There is a lot of helpful info and support here for you so I am glad you have decided to join.

AB
xx

Hi there! I live in (near) Atlanta too, and I'm 23. I also go to Piedmont, and AGA, wouldn't it be crazy if we have the same GI? I should tell you I haven't been diagnosed with Crohns, and it may be that I don't have it, as that's what the tests and GI say...mostly. I was sick for about 3 months, and I'm feeling better now most days, but I've stuck around anyway. I feel like I can relate to what a lot of people here go through.

Anyway, just wanted to connect with someone local! Hope you're doing alright...

Thanks for the responses. Yesterday was terrible. I ate half a chickfila sandwich and some fries--I knew I shouldn't but I had a terrible headache and I thought it would help....headache got better but stomach pain was so bad I ended up going home from work early which I've never done before. Was in bed the rest of the night. It was the first time I'd had fried food in weeks so I tried to take it easy with only half a sandwich, but apparently that's a no go.

Angrybird: I had a colonoscopy in October--showed a little inflammation but nothing to justify how I've been feeling. My doc put me on Entocort, but doesn't seem like it's been helping. I take multivitamins and well as a sublingual B12 every day. I will make sure to get bloodwork done when I go in a couple weeks.

Lustforlife: Great to hear of other young people in Atl. I go to Dr. Dalton. I like him a lot but his staff is TERRIBLE. It takes days to even get a call back just to make an appointment and his nurse Brandi must hate me or something because she refuses to call me back. It's gotten so bad I've considered switching docs, but I just don't have the energy. Every time I go it's at least an hour usually more until the doc can even see me. Why are doc offices like that?!?!

I'm wondering if I've developed some sort of reaction to the Humira. I've noticed my headaches are def. getting worse and I've read that can be a side effect. I dk I'm just totally overwhelmed and at the end of my rope.

I sometimes tell friends I feel so bad that I just wish I was in the hospital. People without health problems don't understand that comment, but I'm sure people here do.

Would you be able to speak to your GP and see if they can help get a message to your GI about the problems you are experiencing?

Good idea but probably wouldn't help. I just recently started seeing a new GP when I moved back to Atlanta. My GI is really my primary care doc since all my issues are Crohn's related. Seems like I just have to tough it out 12 more days. I'm starting to lean towards having developed Humira side effects since I have:

Weight loss
Nausea
Headache
Night sweats
Stomach pain
Weakness, light headed

Hopefully switching to Cimzia or something else can help...

When it comes to a potential reaction to a med I would either try and be seen sooner by the GI or if things are bad enough go to a&e.