I never have energy, feel like an old lady at 19.

[kate.flx]

Hi everybody. Been a long time... Got my Remicade upped to every 7 weeks due to joint pain and started physical therapy a few months ago. Still hurting. Rheumo doesn't see anything else wrong with me, so I'm at a total loss.

I'm now 19 years old. Just got my high school diploma since I missed high school from surgery and now looking for a job. It's not going well, making my depression worse.

I don't do anything, can barely clean the fish tank for twenty minutes twice a week. I still only weigh 95 pounds, have never reached 100. Although I barely eat, I don't like much food and neither me or my boyfriend cook so we eat almost only cereal, bread, milk, chicken and basic crap food like The Rock pizza, jimmy johns, Panera or qdoba.

I'm just tired of feeling tired and my body hurting and need to find something to help. I don't know if it's the Remicade, Crohn's or me naturally useless. I tried working out for months at a stretching class and it never got better, never helped my joints, I always came home and slept for 3 hours which was BAD. I quit the gym due to no money or motivation to make the money to continue.

I pretty much just want to die cause it's been 2 years and I see no relief.

 

[Artisan105]

Hey Kate...

You got to change what you eat... Just by looking at some of the food items you listed will cause lots of inflammation. When you are flaring, your body's ph balance is in chaos. You have to eat more foods high in alkaline... processed foods or soda will cause inflammation. Your body won't absorb any nutrients and in the end you will be tired all the time & be sick all the time.

I know it will take some effort but you must must must be picky on what enters your body as food. Go to the diet section of the forum. There are many people who posted what works for them. Create a journal, write down what causes you to run to the bathroom while also writing down what works. Make sure to look at all the little details on the label of the food.

Also, stay away from stressful situations or environment that causes you stress. Are you feeling depressed? It sounds like you have some anxiety and depression. These things are common for people with Crohn's or IBS. You might want to talk to your doctor about this too. Are you working right now? Your BF working? Yea, since you are flaring you wont be able to work. You have to rely on your parents or your BF for financial help. Who is your insurance provider?

Anyways I am sorry you feel overwhelmed. It sucks having this disease at an early age. I had this since I was 7 years old. -_- I had 6 surgeries, fistula's, hernia's, ulcers, complications, open-wound healing (twice!), appendix removed, colon 5 inches removed, colostomy bag(twice), TPN feeding tube for a year, Pick-Line 50times, hospitalized at least 30 times, blood transfusion 20 times, dialysis, ICU- Coma for 3 days, c-diff, anemia, internal bleeding, blood in stool (liters)- dark blood, red blood, pain pump- morphine to dilaudid, every Crohn's med from 6mp-metho-imuran(made me stop breathing)-remicade, pentasa to asacol, flagyl, every pain med from vicodin-percocet-oxy-dilaudid-fentynal etc.

Hang in there. It can only get better. :] If you have anymore questions I can help you out just like most of the people here.

 

[kate.flx]

You've definitely had it rough :/, thanks for the info I'll check the diet section. I do avoid soda and the fast food like mcdonalds burgers and tacobell cause it all disgusts me, but salad and sandwiches are not a good staple diet obviously. I don't get diarrhea at all so I eat whatever with no limitations. I don't drink water almost at all which I know is bad so just green tea and juice.

I've been on Prozac but it doesn't help my depression much. Luckily my boyfriend makes over 6 figures, I live with him and he supports me although I'm still under mom's insurance (Premera Blue Cross) but now we have a $15 co pay and I can't afford therapy anymore.

 

[Artisan105]

Yea I don't know why they give Prozac... that stuff doesn't work. I am glad atleast your finances are taken care of by your BF. It can be stressful with all the medicine, doctor visits, hospital fees- hospitalizations, ER visits, Urgent Care... etc.

Try to eat healthy regardless of diarrhea because eventually it will lead to a flare. Might as well maintain a healthy GI track while it's good Why are you depressed? Because the pain? illness? Change of lifestyle due to the illness? Limitations?

 

[kate.flx]

Never been happy cause before diagnosis I was always sick. Never got to play sports or hangout with friends out of school, I barely was able to sit through 5 hour school day and couldn't do homework so I struggled all my life.

My doctor said my life would change after surgery and starting rem., but it hasn't. I'm still sick always feeling horrible especially when it's close to remicade time and I start getting the stomach pain.

I hate myself/everyone I meet, fail college, can't find a job I can do, and my man is my only friend but he is thirty and works all the time since he's the manager.

 

[afidz]

Have you had your blood levels checked recently? It is common for Crohn's patients to have low B12 and Vitamin D. That could be causing your fatigue. It is also common for Crohn's patients to be anemic as well and that would cause fatigue. Do you know if any of those things are problematic for you?
Here is a link to a forum wiki, it has a list of important vitamins and minerals and what may happen if you are deficient in them. Might explain a lot of why you feel the way you do http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

 

[Artisan105]

Never been happy cause before diagnosis I was always sick. Never got to play sports or hangout with friends out of school, I barely was able to sit through 5 hour school day and couldn't do homework so I struggled all my life.

My doctor said my life would change after surgery and starting rem., but it hasn't. I'm still sick always feeling horrible especially when it's close to remicade time and I start getting the stomach pain.

I hate myself/everyone I meet, fail college, can't find a job I can do, and my man is my only friend but he is thirty and works all the time since he's the manager.

I know it is difficult to think positive. Just take it one day at a time. Try not to think about things way into the future. You can go to college after you heal up. Your health is most important. Then take classes part-time. Don't compare yourself to other people- they are normal healthy people. Eventually after you learn to pace your life, level out your stress, eat properly, and maintain remission, everything will fall into place I promise. Also be thankful you have such an understanding bf, and plus you don't need so many friends anyways. Most will not understand your situation or your feelings or your pains. For right now just stick to your close friends, your family, and your bf

 

[kate.flx]

Not sure about Vit. D but my B12 is low. I bought gummy vitamins it's just hard to keep up with taking them. I have a lot of other meds.

 

[Unicornsusie7]

Kate
Just a suggestion I use pill containers to remember to take all my meds. I have two one for AM & PM meds and one for lunch time meds. And I include my daily vitamins and calcium pills with the rest of the meds I take. just set them up at the beginning of the week and put them in the place that you eat your meals and take them after you eat.
It takes time to get used to taking all the meds but better to take them as prescribed so they will work better.

 

[Lkies3285]

I also have no energy anymore, I constantly just want to go back to bed. Your not the only one.

 

[rygon]

Crohns can make you very tired due to mal absorption and using the vtamins to repair your intestines continuously.

s said above, i would get your Vit D, B12 and Iron levels checked.
Vit D is absorbed from the sunlight, so make sure you get out in the sun. The rest are from your foods.

You may find anything wholemeal, corn, caffeine, and processed foods cause problems (even if you arent getting D). It is important that you have varied meals as these are where you get all your vitamins from, without them you will feel ill. I would suggest cooking for yourselves, Jamie Oliver has a book out called 15min meals (also one called 30min meals) which goes to show that healthy, good tasting food doesnt have to take a lot of time to make.

How is your crohns btw? If you are not in remission then you will feel tired all the time, have you had a scope recently?

When I was really ill I found my hobbies gave me a sense of worthwhile, and kept me awake (if I didnt have anything to do I would naturally feel sleepy). These where things like reading, online learning, gardening, drawing and cooking

 

[kate.flx]

I had a scope a few months ago and it was fine, but my last infusion (end of January) showed mild inflammation so I have to get labs prior to my June Appointment with the GI. I'll check out that book, that sounds like a real good idea. I am interested in cooking.

GI did want to give me B12 injections but I refused. The B12 gummies work well when I did take them regularly.

I've taken up 2 hobbies but not very motivated. My boyfriend and I spent thousands of dollars on equipment for snowboarding this past season, and we went twice but I hurt my neck and gave up. I would like to take lessons next season. I also started fishkeeping, and I love it. It's very interesting, but maintenance is a B- sometimes!
It's hard for me to understand how I can love something, but not want to do it at the same time. Very frustrating.

 

[alex_chris]

Hey Kate, that all doesn't sound too good and I can relate to being tire, had that for a long time in the past.

What's your current haemoglobin level?

 

[kate.flx]

Hey Kate, that all doesn't sound too good and I can relate to being tire, had that for a long time in the past.

What's your current haemoglobin level?

Not sure about that one

 

[alex_chris]

Not sure about that one

Basically, you know Crohn's can be vicious cycle. You are underweight and tired because you got pain and generally are tired. That leads to deficiencies such as iron deficiency and protein deficiency which lowers your hemoglobin (you end up with anaemia) which makes you even more tired.

The problem is, how do you break the cycle? I know it's hard, especially when you are in pain and are depressed as well. But you are so young, there is no reason you can't get the Crohn under control. The first thing must be to get a bit of weigh on your ribs... Have you tried liquid supplemental nutrition - they aren't the most tasty thing you can drink but they really help if you are disciplined (just beware that you only get "neutral" taste ones - your doc should know).

Lastly, try small steps. You say you are depressed and that has been the case for a while. But posting about here and saying you really don't like to be depressed is definitely the first thing to doing better. You need to believe that you can manage your Crohn long term with basically no sympthoms at all. But drugs alonewon't get you there, it needs effort and a step by step approach. Have you ever tried running (with motivational music...), it's basically a natural drug and whenever I run I feel better afterwards. You need to start slow of course, but consistency is key (3 times a week 10-15 minutes at the beginning would already be enough).

Well, those are my 2 cents and I could understand if you dismiss everything I said as "I definitely am not doing anything of those idiotic things" but next to positive thinking, the right dose of aza and vitamin therapy this is what really helped me.