Never-ending Crohns

by Sheila
(Indiana)

I was diagnosed with Crohn's disease last November. I have had many different treatments, even developed pancreatitis from one of the medications. Recently I had my gallbladder taken out. I am currently on Humira and for a couple of days I felt really good. Now I am back to the same old, same old. Exhausted all the time, pain in my back, feeling sick after eating. It just seems to never end. Everytime I get a little hope, I start feeling crappy again. I have never had anything that knocked my feet out from under me like this disease has. I am rarely working and have even filed for disability because I just can't seem to work in any consistent manner anymore. I am not use to that. I am a person that has always worked, and I am constantly on the go. Since I got this disease, I don't feel like doing anything! Anyone have any advise for me?

Comments for Never-ending Crohns

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Never-Ending Crohns NEW
by: Annette Young

Hello:
Thank you for taking the time to write in. I sympathize with how you feel because I am only too aware of how Crohn's disease can take over your life. It is especially frustrating if you have always been an active person. I speak to many people who feel angry and frustrated with the disease but also feel helpless against it.

There is no doubt that having the correct medication for the disease is vital and it can take a while before you are prescribed with the right medication you. Crohn's disease affects people so differently and even though the core symptoms may be similar, it does not mean to say that your response to treatment will work the same as the next person.

There are so many things that can trigger off a bad attack, for one thing if you are feeling really stressed out and frustrated this can act as a trigger meaning that the disease will flare up so it will be a continuous cycle.

I'm not suggesting that that is the actual trigger but that it is important for you to look at your current lifestyle and perhaps eliminate any problems that you might have outside of the disease. Remember that it is a disease that affects the body as a whole, so when you get angry or agitated it will affect how you feel and when you have anxieties, it will affect how you feel. But it is not just emotions that act as a trigger, when you eat food, it can become a problem if it is difficult to digest.

So when you look at your whole lifestyle do take into consideration the food that you eat, any drinks that you have and any external triggers. Unfortunately because this disease has no cure at the moment, it means that you have to learn to live with the disease and to cope in the best way possible and it sounds like at the moment anyway, you're going to have to change your whole approach to life before it starts to get better.

When you are at work, it is important that you tell your employers about the disease and how it affects you personally, I hope that they give you plenty of support as a result but this also might take the pressure off of you if they try to understand. I attach a link with some advice that might be beneficial:

http://www.crohnsandme.com/living-with-crohns-disease/working-with-crohns-disease.aspx

As food plays such a big part in helping to manage the disease, I attach another link

http://nutritionfacts.org/2012/09/13/dietary-treatment-for-crohns-disease/

As aggressive as this disease is, Crohn's can suddenly go into remission, so although it never completely goes, it means that you can take your life back. It can go into remission for weeks, months or even years so there is hope.

I hope this is useful for you. Please do write in again if things do not get better for you, or simply to say that they have.

I wish you much luck.

Best wishes,
Annette
Medication that gave me pancreatitis NEW
by: Anonymous

Yes the drug was azathioprine.
Pancreatitis NEW
by: Anonymous

I was just wondering what medication you were on that caused you pancreatitis? I'm on azathroprine and I know one of the side effects is pancreatitis and lately my pain has been so bad I can't help but wonder if I've gotten that. I highly doubt it, but just wondering how you knew it was different than crohns and what your symptoms were, ect.
I feel your pain--literally!
by: Anonymous

Your story sounds exactly like mine: as far as the meds your on and the symptoms. The worst part is def the lifestyle change. I too am in and out of work all the time and hate the strain my disease puts on the other people in my life. The second worst part is the weird side affects of the disease (or maybe it's the medications?) but they are really scary and this has caused some sever panic attacks which I never had before either. At first, I thought I was having a heart attack or something but it turns out it was anxiety from all the pain and symptoms I'm getting from the Crohns: back pain, joint pain, muscle pain, head aches, chest and rib pain, exhaustion, nausea, depression, anxiety, constant colds and "stuffy" nose, abdominal pain, cramping, either being constipated or going all the time, bloated and gassy..the list goes on! I feel your pain (literally). I'm not sure how much longer I will be able to work with this disease, if things continue this way. What's strange is both my doctors assured me that people with Crohns can have a normal life once treated properly...ok, when?
Response to Brenda
by: Sheila

Brenda,

Thank you so much for your comments. It is so nice to know that I am not alone. I am so sorry things have been so rough for you. I was wondering, you did not mention your age, do you think age has anything to do with this disease? I am 45 year old. The future does make me nervous. As I mentioned I recently started Humira. I have already had a sinus and ear infection, loss of hearing, and now I have to see a dermatologist tomorrow for a mole that has changed considerably. Sometime I think if Crohn's doesn't kill me the side effects of all these drugs will!
TIRED
by: Anonymous

I'm right there with ya! I've had it for 15 years and can't really complain. I started getting sick again about a year and a half ago. Turned out to be an obstruction. Hospitalized with meds then started Humira. It worked for a few months and then another obstruction. Just had resection about 6 weeks ago. Started back on the Humira last week. I'm absolutely exhausted and my body just hurts. My joints feel like they are about to fall apart. I know how you're feeling and its awful. If you'd like to email me feel free..
png21@sbcglobal.net

Brenda from Illinois

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