

My Life Has Reached a New Low

So Christmas is almost here. I remember that even last year as an adult I was extremely excited about the big day.

Honestly it no longer gives me any joy. No more running down the stairs to open presents because my knee hurts so much I need crutches to walk. My knees, elbows, ankles all hurt and my back and chest hurt when I move my torso so I don't want to get out of bed at all.

All I've been doing is alternating between sleeping and crutching as fast as I can to the bathroom so I don't soil myself. As you are well aware, BMs are extremely painful. I am lucky if I have enough energy to sit up and read or play games on my laptop for a couple hours. Very often, I want to do something like read or play games, but I just can't muster the energy...to sit up. Yes to sit up. I used to be able to run 6-8 miles and do extremely intense workouts. Now I struggle to sit up.

My father still doesn't believe I actually have Crohns and keeps saying that he will take me to a hospital or mental asylum simple because I don't eat much (to reduce pain) and I don't get out of bed much (excuse me for not wanting to inflict terrible pain that often makes me yell in agony). I've held off on peeing many times because I'm procrastinating due to that pain so I don't exactly want to crutch around for no reason.

My mom has multiple autoimmune illnesses, but she's even worse than my dad. She thinks just cause she can do things, I can too. If I worked a job like her, I truly think that I would end up in the ER in a week. She keeps telling me that I'm doing this to myself - like I enjoy sleeping much of the day.

I've tried pushing myself many times and it always makes things worse. One time I went on a 30 minute date and messed around a little in my bed for like 30 minutes. I slept for 31 hours straight when she left. Having sex destroyed me. The fatigue was so extreme that I couldn't stand for days. Cross another activity of the list.

I used to have a good body but I've lost almost all the muscle I've worked for. I can't even do one pushup now (used to be able to do 80 in a row). I used to have great skin - random people would even compliment me on it. Now my skin looks bad. My body (legs, chest, back, shoulders, butt) is covered in tons of pimples and I'm even getting cysts. It's not the steroids either; it started before them. My theory is nutrient deficiencies.

Back to Christmas. My parents got divorced and my brother and mother will only appear briefly. No dinner, no real celebration. Everything seems to be broken down.

I could go on and on about everything (just as I'm sure you could) but this vent/rant is already epic enough.

I guess in summary, I feel like everything has been taken away. Before this disease I was at the most happy point in my entire life. My dreams seemed to get closer everyday thanks to my hard work and discipline. I had more money in the bank than most people ever save. I was finally free of my extremely controlling parents (rented my own apartment and pay my bills), having sex regularly, working out 6 days a week, good friends, expanding my business etc etc.

I've now reached a low I never thought possible. The best day with Crohns is still worse than the worst day without it. I never could even fathom being in this amount of misery.

Believe it or not, I'm not one to rant much, but this is just too much for me. When I got bad joint pain that was the last straw. I'm in so deep it seems almost impossible to recover.

My quality of life is zero, and I feel like a complete degenerate.
Hello. My husband who is over 30 also suffers with bad skin which we believe to be due to CD & was only yesterday complaing of sore elbows too. I hope things are better for you really soon 😁😁
I was just dx 3 days ago with CROHN'S. I have seen already people dont believe you could be in so much pain because they cant see anything different on you. Im nowhere near your pain level but I dont eat like I should due to the pain.

Keep your head up man. If you hurt, you hurt, people just tend to believe only what they can see. I also am missing work due to the pain but that is what comes along with this disease. Will always have to live with it.
I'm sorry you're dealing with all that. I, too, have parents who think that I can just "snap out of this". Luckily, I moved 1,300 miles away from them so I don't have to hear them call me lazy or say I'm faking for attention. I hope you feel better soon!!
I feel for you. I also used to be very active and worked out daily for years. Played multiple sports. Worked my tail off. Now I have very little muscle left and get tired on walks and I am only 30 now. If I get my heart rate up my head goes crazy and I vomit. It sucks to not just lose what you worked for but to feel like you will never get back there again. Hang in there though. There are ups and downs. Right now you are down and people may not being treating you as they should but there are still things worth fighting for and people worth fighting for as well. I set a goal each morning. Nothing major, but something I can get done during the day with a little effort. It helps you feel like you are doing something and that you don't need to feel bad about yourself as long as you get that one thing accomplished. Maybe they are not big things but they are a step you are taking back uphill.
Thanks for the support. I haven't gotten around to checking this thread till now.

Update: Things got worse before they got better. Ended up at the hospital for about a week starting Christmas night (dad refused to take me/let me call 911 till I punched him but that's another story).

Hospital visit was terrible but very very helpful. Now my parents take things much more seriously. My mom in particular has greatly changed her perspective. When they said my sed rate was 120 that's when it hit her that this was serious and not mainly in my head.

I'm feeling much, much better now. I know it's partially just the prednisone so it's an illusion in a way, but I think remicade may be helping (only one infusion; too early to say).

No doubt that this is a war not a fight with ups and downs, but if anyone reads this going through a tough time (especially when you've recently been diagnosed) know that it will get better. It may take time but something will work even if you have to resort to surgery.

When I wrote this I was broken and I had been a shell of my former self for months. The pain, both physical and mental, and the extreme fatigue was driving me crazy. I was almost a completely different person.

I'm in a much better state now. I feel more like myself. Definitely not like I used to be but closer.

I've only grown as a person. I was always a tough kid but now little can phase me. I don't feel immortal anymore. For better or worse, I've mellowed out (at least a little). Probably a good thing considering some of the dangerous things I've done in the past.

I think that remicade (or another biologic if it fails) + MM will get me back in working order, at least temporarily. I think I'll always have pretty bad fatigue but hopefully modafinil/kratom/juicing + great diet can help with that.

I'm hoping that the next few months will be a rebuilding period where I can start making money again, working out, and figuring out where I want to go from here.
Wow, 5 years ago. This was my first of literally countless hospital stays (probably 40-50) as well as more surgeries than I can count on two hands.

Also, I mentioned getting infused with Remicade in my post. The drug (even with a double dose) and all other Crohn's meds failed. One drug even gave me acute pancreatitis, adding insult to injury.

Full colon removal was the only thing that saved my life. Ended up at 84 pounds.

My Crohns hasn't gone away, though I am still holding on to my j pouch currently. Had horrible fatigue and stomach pain nearly nonstop for years. Things have gotten very severe recently. Right now as I type this the joint/muscle pain is back and severe. Also getting endless urinary tract infections and have a perianal fistula draining with seton.

I'm fearful of how things will go right now to be honest. But even if I don't make it, thank God I continued. Even when things got much darker than this post (I almost died so many times after this and had multiple hospitals stays for almost 2 months, not just a week), I held on to the potentially making a positive impact on this world so that my great suffering means something. I still hold onto that dream.

But, even if my life is mostly worthless and I die tomorrow, I don't regret living through this pain and horror. I have had such joy too. I am getting married to an absolute doll of a woman in just a couple of months.

Much love to anyone struggling. Keep going. Take it day by day.
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