Trying to understand my new life with Crohn's

[Gilgamesh76]

Hello everyone and thank you for your time!

I wanted to share my story and see if anyone can relate to it and/or if anyone has advice on trying to find "normal".

When I was five, I got psoriasis after going through chick pox. Like most autoimmune diseases it usually takes something to trigger it. Anyway, fast forward to March 2012 at the age of 36. Trying to be healthy, I started eating organic vegetables. Two weeks into that I started feeling really sick to my lower stomach. After a doctors visit and some tests, they discovered I had a single cell parasitic infection! They think it was from the organic vegetables but couldn't be certain. After treating it for a week, I felt better. About a week after, it came back. This time, the tests were coming back negative for the infection. This went on and off for that summer. On August 1st, I started a gluten-free diet (still on it) because I heard it might help how I was feeling. I starting feeling a little better, but I know something was still wrong. Last November, I was finally diagnosed with Crohn's. The specialist thinks the parasitic infection could have triggered it. I alway learned psoriasis and Crohn's can often go hand in hand.

Since November of last year I have been taking the maximum dose of Asacol every day. At first it really helped. But now, it doesn't seem to be as effective as it once was.

I have been asking myself recently, "what is the normal me going to be now going forward"? To be honest, I'm kind of down about my condition, but I know it could be a lot worse so I try to keep that in perspective.

Currently, I think I'm going through a flare up, but I can't say for sure because this is all so new for me. I don't want to gross anyone out, but it is hard to explain without some of the details. Right now, I will go 4-5 day with very little bowel activity and my stomach don't give me any pain...all it pretty quiet. BUT..once a week for a day, things go crazy and it comes on fast. I stomach turns fast and I need to be close to a bathroom all day. My bowels are never firm and it feels like everything in me is going out in one day. The worst is I get that nauseous feeling like you get when you have severe diarrhea. It is so bad I often throw up at least once a week now due to that feeling.

The other thing I'm trying to understand and I hate is being tired. Before Crohn's, I had tons of energy and could function just fine on 6-7 hours of sleep. Naps never crossed my mind. Now, I would sleep 10 hours a day and take naps if I could. But, between work and 2 young kids, that is impossible. Coffee it becoming a closer friend which I know probably isn't good for me in the long run.

Anyway, if anyone can relate or share their wisdom, I would really appreciate it! I feel alone right now among my family and friends. They know I have this and try to understand, but they don't REALLY understand what this feels like (the sickness and being tired all the time).

Best of health to all!

Ryan
Asacol HD 800mg (6 a day)
Fish Oil (2000mg)
Cod Liver Oil (Vit A 1250 and Vit D 135)
Astaxanthin (6mg)
Probiotic
Gluten Free

 

[Jim (POPS)]

Hi Gil,
Ya, sometimes I wonder why my family doesn't understand, but thats the way it goes with crohns. I to get tired alot and do take naps. I started having problums when I was around 45 (1995) but it was just 2-4 BM a day and that was it. No pain, could still do everything. Well fast forward to 2011. I had just retired a fews years ago and I was getting more and more BM's and I went from about 175lbs to 140lbs. Went to the Dr. and after they took out my apendix I woke up and they had also did a resection. I was shocked to say the least. Now I am also trying to find my normal like you. Life will be differant for sure. I was so active before and now when I don't feel good all I do is lay around on the sofa. What I have done the last month or so is "keep my head up" and don't let crohns run my life. Sure, I don't feel as good as I use too but it could be so much worse. I find that the "NEW NORMAL" is what we make it. Feeling good or being sick. I hope you find the support you are looking for at this forum. I find it very helpful going to the chatroom, there are alot of people there that can help. Hope to see you there soon. I'm there around 6PST most nights, come and I will introduce you to all my friends.
Jim.

 

[Guest2383]

Hi Ryan,
Don't worry, Mate outside of this forum there are very few people that will ever fully understand what you are experiencing in terms of constant fatigue and all the other unpleasant symptoms that you have. Some more generous of spirit will listen to you, but will never comprehend. There will be those ignoramuses who are too lazy to do a little research into the condition too! I hate to say this but there is also another category that will treat anything you might say with suspicion.

After almost two decades, I have got to the stage where I find it easier to mentally switch off when faced with negativity. Those who doubt us would not walk in our shoes for a single day.

I wish that there was some words of wisdom that I could impart to ease your burden, my friend. All one can do is to try, not easy- to come to accept the condition and tailor your life around it. If I had a magic bullet to cure your woes it would be sent express post.

On a final note, years ago when nursing in a maximum security psychiatric hospital in the UK I too developed psoriasis, although mildly so. When I left the unit the problem never reappeared and that was 35 years ago! Maybe stress had a hand in matters and makes me wonder whether the two conditions are in some way related?

Battle on Mate. There is no dress rehearsal in life.

Kind Regards,
Merv:wink:

 

[David]

Hey Ryan and welcome to the community. I'm sorry to hear about your struggles

A couple questions:

1. Do you know where your Crohn's disease is located? Or example, is it in the small intestine, large intestine, or both?

2. Have you ever had your vitamin B12 and vitamin D levels tested? Both are common deficiencies in people with Crohn's disease and both can lead to fatigue.

All my best to you.

 

[EthanClark]

Ryan,
I am sorry to hear your struggles. You found a place that can help. :ybiggrin:This place has truly been amazing for the support and advice. The best advice I can give you is to try and keep your head up and keep a positive attitude whenever possible. I know this will be hard as most of the time you may not feel well but it is quite amazing how powerful the mind is. I am sure you will get lots of great advice about supplements and treatment options from the wonderful people on here. I wish you luck with finding a treatment that will work for you.:hug:

 

[martinF]

I relate to some elements of this! The symptoms are so fickle. Its hard to sort out a day when you dont know whether the food you ate - which was fine before - acts up a few days later.

 

[Gilgamesh76]

Thank you everyone for your thoughts and feedback! I'm excited to spend more time on this forum to learn, support, and be supported! Had my B12 results come back today and it looks good. So, on to more research to see if there is anything else I can do to help energy levels.

Best wishes to all!

Ryan

 

[David]

Hi Ryan,

What was your specific B12 level?

 

[Sybil Vane]

Hi Ryan! Welcome to the forum--it's nice to meet you! I'm sorry you're going through this right now. Has your GI talked about getting on a biologic like Remicade or Humira to help push your disease into remission?

I know how hard it is to deal with this disease on all levels including emotionally. I struggle with it as well. I write about it and try to help others and have felt some peace by accepting it as just another part of myself. I know others who don't have it can't truly understand the daily challenges behind Crohn's, but I still talk about it. I used to try to pretend I could do what others can and now I'm fine with telling folks that, no, I can't travel right now, or no, I'm sorry, I won't be able to go out to dinner. I used to feel so guilty but it really is a fact of life that when you are in a flare you need to baby yourself a bit. Rest is what helps me the most. I know that's not possible most of the time, but when it is, you need to seize the moment and not feel guilty if you have to go to bed at 7 p.m. My kids joke me because I go to bed before them.

 

[AndyJ]

Hi Ryan,

Wow I can related to so much of your post.

I was diagnosed in 2009 with crohns after been very ill for six months. Since then I have had countless hospital visits and drugs galor. August last year I had a resection and even tho I knew this was not a cure I was hoping for a good couple of years peace. Couple of weeks ago I was told my brother has cancer and few days later my crohns flares up
My doctor thinks its the stress of supporting my family and working a demanding full time job. I am back on all my pills again. Even with all ths going on I try to stay as positive as I can but sometimes it's just a little too much.
The sleeping and napping is torture I never feel truly satisfied with any amount of sleep

But the future is what I make it and crohns will not beat me

Here anytime you want to chat

Andy

 

[scottanias]

I can relate to the healthy eating part. Around this time last year I decided I was overweight and just generally sluggish. I decided to go on a strict paleo-type diet (still adhere to a lot of the principles of it), and hit the weightroom. I started feeling better and getting in much better shape than I ever had before. Dropped around 40 lbs and was feeling great. Then a lot of stress came into my life and I noticed I was losing weight without even really running a caloric deficit. Then came the diarrhea, chills/feverish/nauseous, fatigue and general "off" feeling. I got diagnosed with Crohn's shortly after all this.
Anyway, my point is this: with proper treatment and nutrition you can feel quite a bit better. I am by no means an expert on this but I can say what has worked for me.

Plenty of sleep. This was really difficult for me initially so I got some meds to help for a few weeks to get me through the adjustment phase of dealing with the diagnosis.

Find ways to reduce stress, which is easier said than done. Lots of people meditate and exercise. Exercise can be pretty hard when you're flaring, so do some light stuff like walking or something. It helps. I personally find time to just completely chill out and read. It has helped me immensely.

I was pretty asymptomatic but a major one was fatigue. So I have been supplementing vitamin D and B12. In addition, I've been juicing a lot which I think has been the most beneficial as far as that goes. There is a subforum on here dedicated to juicing and they have some really good recipes.

 

[Gilgamesh76]

Hi Ryan,

What was your specific B12 level?

My level was at 88. Still waiting on the Vit D results. 88 is pretty good right? Thanks!

 

[cagfire]

Hey Gil,

Nice to hear your story.

I too suffered with fatigue for years...I was diagnosed with Crohns in 1987 and for the past decade or longer I've been feeling as if I was living with chronic fatigue with no let up.

My B12 injections went from quarterly, to monthly, then fortnightly, then weekly, until in May 2011 I was diagnosed with Myasthenia Gravis.

This was the cause of my chronic fatigue, and now that I know and understand this, I feel much better. I know that if I feel fatigued, how to rest up or excuse myself...how to pace myself and when to take my meds to keep my eyes open.

It's been a roller coaster for me, but one that has taught me take my time and smell the roses.

Sometimes it's not the crohns that is giving us the fatigue, but something else...so be alert to changes in your body and general health, and don't let doctors lump everything into the crohns too hard basket.

Cheers
Lisa

 

[Gilgamesh76]

Thanks everyone for sharing your stories! It helps me understand that my condition and feelings are somewhat normal for people with Crohn's. I think the hardest part right now is the emotional end of things. I've been really down recently and I think a lot of it has to do with knowing that things have changed and what I once was now needs to be redefined. What is getting me down I think is the scope of changes due to Crohn's. I am an ambishous person and always liked to be on the go. Now, I need to force myself to slow down, sleep more, and try to reduce stress. I always use to handle stress very well, but I have noticed that my Crohn's really "let's me know" when it is around. 2 weeks ago, I found out my good friend is dying from cancer. On top of that, my wife and I are going through an adoption process and we just found out the agency we were working with went bankrupt. We lost 2 years of waiting and $20k. Since these events my Crohn's has been bad. The hardest thing is as the dad of the house, I should be the strong one and be able to work through these things for my family. Yet, I really feel defeated inside, not just from the bad news, but the fact the Crohn's really adds salt to the wounds by making your life misrable at the worst possible time. Sorry for vetting, but it's been hard recently. Your feedback does help and I really do appreciate it!

Speaking of sleep, I should probably head to bed! 9pm on a Saturday night...pretty lame!

 

[David]

My level was at 88. Still waiting on the Vit D results. 88 is pretty good right? Thanks!

No. You're severely deficient and need on B12 injections yesterday. If your vitamin B12 level is indeed 88pg/ml you are facing irreparable nerve damage and someone dropped the ball BIG TIME. The lower end of the range for B12 is usually 180-200pg/ml and that number is outdated. You don't want your level to be below 400pg/ml and yours may be 88. 88.

Get on the phone to your doctor immediately.

 

[Gilgamesh76]

No. You're severely deficient and need on B12 injections yesterday. If your vitamin B12 level is indeed 88pg/ml you are facing irreparable nerve damage and someone dropped the ball BIG TIME. The lower end of the range for B12 is usually 180-200pg/ml and that number is outdated. You don't want your level to be below 400pg/ml and yours may be 88. 88.

Get on the phone to your doctor immediately.

Sorry David! I was way off wit that number. I confused that number with a different test I took earlier this week. My actuals are at 635. Sorry again for the mistake but I appreciate your concern! I'm on my third day of steroid treatments for my flare up and finally today I feel like I have a little more of my energy back! That is good!

 

[David]

Ah, ok. 635pg/ml is good. Well done on that I'd get it tested every once in awhile to make sure it doesn't trend down.