My Story

Hi All,
I'm really happy to have found a Crohn's support forum on the Internet. It's helped me feel not so alone reading through everyone else's stories. So here's mine.

I'm 29 and I started experiencing some issues with bleeding about 2 years ago when I got married. I checked with my doc and he thought it was just gastritis due to the stress (happily married btw, but good lord weddings are stressful). So, life goes on, and I had intermittent issues with the bleeding over time.

September 2011 rolls around and I'm starting work on a graduate degree, in the process of moving to the Boston area from upstate NY, starting a new job, and in the middle of all of that my apartment gets flooded out from the remnants of hurricane Leo.

Then, things took a rather sharp turn for the worse. I started experiencing all of the classic Crohn's symptoms (unbeknownst to me) including a significant amount of blood with bowel movements, pressure, pain, bloating, lack of control, and fatigue. I was so busy and foolishly let this go. I ended up going to Berlin for 2 weeks for work that November, which was also incredibly stressful. Poor diet, coffee, lack of sleep, etc. etc.

Before I know it, the holidays roll around and my wife and I are returning home to upstate NY to visit our families for Christmas. My parents are both medical professionals. They took one look at me when I showed up on Christmas and said "we're going to the hospital". And so I did. I unfortunately spent 5 days (including Christmas) in the hospital during which I lost 15 pounds. It was an awful experience with many tests, and I came out with a Crohn's diagnosis.

This has been really hard since I need to tone down the stress in my life and change my diet to more bland things (I love/miss spicy foods, bbq, and coffee). But I am learning what my triggers are.

Even harder has been the fatigue and weight/body mass loss. I am very athletic and I work out (or did) at least 3 times a week. I've lost a significant amount of bulk, and I have been unable to put it back on. My appetite is up and down and I just want this flare to be over with. Many days I'm just too tired even with the prednisone.

I have a cousin who was diagnosed 2 years ago, and she's been so helpful with this too. And I can't say enough for my wife who has been 100% awesome and supportive through all of this. But, it's still not easy, and I just want to be normal again. For the sake of writing a book, I'll end it there. But thanks to anyone who reads this. It's just helpful for me to finally write this out.

welcome to the forum, good story. Great you had family who have the know how (although pity they had to find it out over xmas).

It is hard to get into remission but it can be done (ive done it through diet and drugs).

Good luck in finding uot your trigger foods and hope you can start exercising again sometime soon

Greetings and a most hearty welcome to you! I'm so glad you joined, thank you for sharing your story.

I feel you on losing that bulk. I went from 195 (lean and muscular) to 168 at my worst and for an athletic person, it's so hard feeling and looking weak.

You mentioned fatigue. Have you had your vitamin B12 levels checked? People with Crohn's Disease are very commonly deficient due to active disease in the terminal ileum and one of the common symptoms is fatigue. I'm really big on people with IBD monitoring their vitamin and mineral levels so as long as I'm at it, have you had your vitamin D, and folate checked?

Again, welcome! I hope you stick around. Check out our diet and fitness forum and maybe get some ideas for getting active again

In August of last year he was down to 90#'s, was rushed to hospital. I am now his home nurse. He was on TPN for six months at home. Tried Remicade for 2 months and now is so stiff he cant move. Not sure if from Remicade infusion or the TPN or what.

Thank you all for your replies. I really appreciate the support. Its good to know there's a light at the end of the tunnel (remission), but its just a little hard to see right now. And I'm sorry for your experience, as well, David. It sounds like I'm going through the exact same thing. I am really anxious to check out the diet and fitness forum to learn more. I am swimming in my clothing anymore, and I kind of miss filling it out.


As for the fatigue, I've had plenty of bloodwork done, and they haven't indicated any deficiencies so to speak. But, I'm not certain if they were checking B12 and other vitamins, either. I do take an "active lifestyle" multivitamin and 500 mg of B12 every day. I suppose I'm still in the "mal-absorption" phase, so its probably likely they're just going right through me. I see my gastroenterologist again soon, so hopefully we can talk more about that.

Thanks again all for the support and suggestions.

Hi there just wanted to say welcome to the forum Totally agree about the vitamin checks and hopefully the diet and fitness forum will help as well. Have the docs mentioned any long term treatment options yet or do you have an appt coming up for this?

Hi angrybird. No long-term treatments mentioned yet. I meet with my gastro doc on Valentine's Day (Feb 14th) actually, so we'll probably discuss what's next considering I can't stay on prednisone forever. : ) I was only able to get a quick consult a couple of weeks ago during his lunch break. Seems like a good doc though, and I'm looking forward to working with him.

As for the supplements, I just bought some tonight from the organic food store. Want to stay away from the sugary, heavy stuff since it doesn't agree with me very well.

Glad the appt isn't too far away. One supplement I really hope the doc has prescribed for you though is calcium, this is very important whilst you are on the pred to help protect your bones. If you are not taking this please make sure you ask about it when you see him. If you have not already make sure you write down any questions you have and take the list to the appt, it can be so easy to forget to ask something and it is important you leave the appt happy that you have the info you want. Keep us updated on how it goes.

Welcome! This forum has been an emotional lifesaver for me, I hope it is for you too! Great people here!

If you are having absorption issues, 500mg of B12 would likely be nowhere near enough. I suggest getting your blood levels checked to determine what mode of supplementation and dose is optimal and whether you need it in the first place. Please note that just one B vitamin shouldn't be taken. If you take B12, take a complex B vitamin as well to avoid creating imbalances (according to the University of Maryland Medical Center).

Cool, angrybird. I'll have to make sure to keep up on the calcium then. I have it in my multivitamin, but more can't hurt. David, That's also good to know about the B12. It's funny you should mention that, I just bought a "Super-B Complex" after work today that has B6, thiamin, riboflavin, and some other stuff in it. The %'s are really high, so I'm hoping that'll help convert food to energy. Also bought glucosamine for the joints and magnesium.

Still low on energy, but I tried an organic protein/energy mix today and mixed it with almond milk (I'm lactose intolerant) which seemed to help a bit. I think that'll be good on my low energy/low appetite days.

The advice and support here has been great so far, so a big thank you to all of you!