New to Crohns

[LTomes]

Ohh.. This forum I can tell maybe a life saver.. I just got diagnosed with Crohn's about 6 weeks ago and so far it's been pure hell. I have never been sick before not like this and I'm having a rough time with it. It just seems my body is doing weird things and I never know what to expect. I am stressed about work. I have been on short term disability at work since all this started. Minus about a week and half where I tried to go back to work in between my first hospital stay and then surgery: I just don't know what to expect. Will all of this eventually die down? I know no one that has this so its hard. My body just does things and I don't know if it's. Crohn's or not. . Thank goodness for this forum.. Latest thing is thanks giving was yesterday and early this morning I got a pain right above my belly button that kind of radiates to my side/ back. It last for a few hours then just goes away.. This has happened before 4 or 5 times is this part of the Crohn's?? It generally happens after large meals and once right as I was eating red beans and rice( I know now this meal is a no no) It feels like a very full feeling like I need to pass gas or something it's not excruciating to send me to the hospital but does keep me up until it subsides.. I have noticed when it happens it's generally worse when I lay on my back. But just very uncomfortable until it goes away in a few hours..

Thanks in advance i appreciate all of you

 

[DJW]

Hi,
It could all be part of the Crohn's.
It does get better but it takes time to come to terms with it. Give yourself lots and lots of time.

Are you on any medication yet?

 

[LTomes]

Hi,
It could all be part of the Crohn's.
It does get better but it takes time to come to terms with it. Give yourself lots and lots of time.

Are you on any medication yet?

Hi yes - I'm on pentasa. Prednisone, and budesonide. But they just started me on the budesonide and are tapering me off the prednisone. Praying to come to terms with it its just a lot and I have never been sick before this. I am sure I will but just getting myself familiar with what to even expect will help, but I guess it does take time.

 

[DJW]

Acceptance of the disease is similar to the stages of grief. (I've read that on this forum numerous times).
It's a lot to absorb.

It would probably be a good idea to go to the library and check out some books written by gastroenterologist. Be careful of the internet, there is some truely crazy stuff and no shortage of scamers who are more than willing to prey on hurting people.

Ask lots of questions, knowledge is power.

I hope you feel better soon.

 

[Justanothercp]

LTomes,
Sorry you have to be here but glad you found the site. It can be very helpful.
I've had crohns for 25+ years with one resection, one hospitalization and I take Meds: Budesonide, Lialda, Remicade and omeprazole to manage symptoms.
Having said all that, I have worked full time through it all. Hopefully you can find the right concoction of Meds to manage things and have a full productive day to day existence.
I found diet makes a huge difference for me, I wish I would have figured that out 15 years ago! There is a lot of controversy about diet, you will have to learn and experiment to find out what works for you. For me, the Paleo diet seems to give me the best results.
Wishing you the best!

 

[GregH65]

I too was diagnosed at the end of October. I have a very aggressive GI Doc who is great, plus I feel like either I'm not as severe as some here and just lucky.
I can only tell you what works for me, and everyone here has different responses to meds and diet, but you have to start somewhere.
When I was hospitalized post 6 weeks of diarrhea I was dehydrated, anemic, severe joint swelling, muscle aches and cramping with random skin bumps. I was treated with IV antibiotics, steroids, oral mesalamine, and fluids. After ct, MRI, and scope we knew the dx.
I've been home for a month tapering off steroids, still on mesalamine, and started Humira (with no side effects). The dietician recommended a low residue / low fat diet that has been working well. Basically no grains, no seeds, no raw veggies, no fruit or veggies with skin, NO BEANS, No composite meats like bologna, no fried food (my only flare in a month was from a chicken sandwich from JIB, pain was horrendous).
You really need to monitor your diet, get rid of anything that will be tough on your insides and don't over eat. Monitor dairy, I have no issue with it, but some do. Proteins are good, eggs,chicken,fish, PB etc. Yogurt is good.
I take liquid vitamins in the morning mixed with aloe and water, 500mg tumeric, and a probiotic. I do pretty good so far.

 

[ronroush7]

Going without gluten, and dairy has helped some but everyone is different. It might help going yoa nutritionist. Best to you.

 

[ronroush7]

I personally have issues also with caffeine and a lot of vegetables.

 

[LTomes]

Thank you so much for your replies. After researching around i have found a local dietician that I am going to go see who happens to have Crohn's.( so that's a plus someone who actually walks the walk) so hoping that will help. Hopefully as the days go by It will get easier to accept, 6 weeks in and the hospital and surgery I have already had its just been a lot at once. It will be ok I just have my ups and downs right now.

 

[ronroush7]

Best to you.