New Crohnie =D

[fodent]

Hello,
My name is Theresa.. Ive had crohns for just about 5 years! Im still figuring it out though! I am currently on Mp6 and allipurnol. Im looking for some tips and tricks and secrets that help everyone with thier Ibd / crohns! I have never met anyone else with Crohns and havent:: been able to nit pick their brains! What are some things that make you feel better? what are must haves?
~Thanks soo much!
Theresa

 

[afidz]

Hi and welcome Theresa!
What are your symptoms? You mind going in a little more detail about your story? I would love to hear what you have been through, and maybe then I can offer you advice or tell you what has worked for me. I'm glad you found this site, its hard to find support from people that don't know what its like. I look forward to hearing from you!

 

[fodent]

Okay...here it goes.
When I was 15, after weeks and weeks of severe cramps and diarrhea, I FINALLY went to the Dr. (after not being able to walk from pain) I was transported by ambulance from one hospital straight to Boston Children s, From there I was diagnosed with crohns, I was put on Prednisone gained a ton of weight.
After prednisone I have been on 6mp and allipurnol ever since.
Have not been hospitalized since either.=)
I wouldn't call my crohns severe but I do have lots of inflammation. ( I have a hard time remembering my medicine)And I find that new places and stress trigger a "go" button lol!! ( If eel like the octopus in finding nemo! whenever I get nervous I have to ink!!!) Its sooo annoying! No one in my family has crohns. Its a tuff disease to explain =)

 

[Jennifer]

Hi fodent and welcome to the forum!

Are you having regular blood work done since you're on 6MP? I had mine done once a month and had to stop taking it recently because it was starting to affect my liver. If you're still doing well on it then that's great! I just hope you're having regular blood tests done.

With the urgency issue you can try to have a kit with you which might have wet wipes, spare change of clothes, toilet paper etc. anything you might need in case of an emergency. For me I take Lomotil as needed for diarrhea but I'm not in the middle of a flare either. Is your inflammation not going down at all? Would help a lot of your GI could get that down. Do you know where your Crohn's is located? If its not in the lower portion of the large bowel then you could take Entocort instead of Prednisone as it has less side effects and does a great job at reducing inflammation.

For diet try to avoid foods you know cause symptoms (a common one is fiber). During a flare I always follow the Low Residue diet so if you want you can give that a shot. You can make any meal low residue everything has to be cooked at home though, eating out on the low residue diet can be tough but not impossible.

Love Finding Nemo by the way! Great reference. I get that way whenever I smell coffee.

 

[acheallova]

Hiya n welcome Theresa. There are mounds of members here whose brains you could pick I'm sure. It's a great community for support and a listening ear. Hope you find what you are looking for. Explore the site and get involved. Welcome again, hope to see you around! Muah- hugs-

 

[Peytons mom]

hi theresa! Looks like you live near me, we are in Merrimack. My son is the one with crohns, I'm on this site to for him. He's 12. who do you see for doctors? my son see's Dr. Hofley up at CHAD Dartmouth Hitchcock, Manch.
darlene

 

[DAVID KINGHAM]

Hi crohnie..lol..I've had crohn's for 21 years and my favourite friends my hot water bottle,funnily i keep it on the right side of my back which helps me.Also I've found that over the counter pain killers have more affect than the prescribed. I'm on Tramadol/gabapentin and fentanyl patches for pain but in times of real trouble i resort to well known pain killers.I don't know about you but i find when i'm flaring up,i prefer to be some where quiet as noise seems to stress me out and makes things feel worse.Nice to have a new member here,you can find a lot out.All you have to do is ask,we are all here for each other.Cross fingers for loads of pain free days ahead for you and hope you can enjoy your xmas dinner

 

[fodent]

Hello!
Wow you guys are great!!
Okay I get blood work done every three months or as needed, I have been on 6mp since I was diagnosed. The inflamtion I believe is from forgetting to take medicine. I am no longer on prednisone! =D No liver issues as of yet! My Drs are At boston Childrens Hospital, I am currently seeing Dr. Keri Gosselin she is great! I really love boston they are very care oriented I really recromend them! I absolutley LOVE my hot water bottle!!
Is their a Medicine for anxiety? I feel like my crohns is very anxiety triggered. Like all the what ifs and what will happen that come with this disease!
Thank you all soo much!:ybiggrin:

 

[xmdmom]

It is definitely easy to go what iffing. Mindfulness practices really help staying present and calm and have been used a bunch to help people with a variety of chronic illness. If you're close to Boston, I suspect there are mindfulness classes you could try and see if it helps.

 

[fodent]

Thats a really great Idea! I never thought of a class for that. Thank you!

 

[Jennifer]

Is their a Medicine for anxiety? I feel like my crohns is very anxiety triggered. Like all the what ifs and what will happen that come with this disease!

There's Xanax and Klonopin that I know of, but one can also do low doses of antidepressants. Will take some time to find what works for you but for starters you might want to try counseling/therapy as they can give you tools on how to manage stress, anxiety and depression.

 

[Peytons mom]

my son also has a lot of anxiety, his therapist is teaching him mindfulness practices, to calm him down, its much like meditation

 

[acheallova]

There is also Ativan°, Valium°, Prozac°(SSRI) and Celexa° (SSRI) which are used for anxiety along with counseling/therapy and or meditation. Also, new to treatment of IBS/IBD is what they call body talkers. It's like a psychic meditational therapy session. Very unique and new. - hugs-