Just saying hi

[chattertess]

New to the forum, and wanted to introduce myself!

*imagines sitting in a group circle*

I'm Tess, and I've got TI Crohns Disease. lol

I'm from East Sussex, UK, and I'm a cake maker (own business). I was diagnosed not that long ago, so educating myself about Crohns is pretty new to me, so any tips/advice is always handy! My brother was actually diagnosed with Ulcerative Colitis 10 years ago...I had my bets on getting that condition (poor family genes - bound to happen!), not crohns! Guess we just needed the variety in the family

Looking forward to talking to people going through similar things to me, and offering support to all of you. I feel you can never get too much support in these situations. :ghug:

 

[SugarberryGA]

Hello from Atlanta, GA. Glad you're here. You'll definitely learn a lot from the posts; I know I have. I was diagnosed with Crohn's almost 30 years ago and learn something new about it every day, especially here. This forum has been a huge help to me. Let me know if you have any questions about Crohn's.... I'm pretty much a veteran at this point.:ybatty:

 

[chattertess]

Thanks SugarBerry I've already learnt a lot in just a few hours of browsing the site! What medication have you been given over the years if you don't mind me asking?

 

[SugarberryGA]

Thankfully, I have a mild form of Crohn's, so mine is managed with Pentasa and Entorcort EC. I've never had surgery, nor have I ever had to go on Remicade or any of the infusions. In the nearly 30 years I've had Crohn's, I've only been hospitalized once with a blockage, and that was last year. My heart truly goes out to those who have it so much worse than I do. How aggressive is your Crohn's?

 

[chattertess]

And heres hoping you will continue to have no other extreme problems
To be honest, I'm not totally sure how aggressive my Crohns would class as. My other half just butted in and said quite severe lol. I have problems with it everyday - stomach cramps, toilet rushes, exhaustion to a crazy level, muscle/joint pain etc etc. The doctor never really talks about how bad mine is (or has told me anything about whats going on with my body lol), but just recommended Remicade.

 

[SugarberryGA]

I have found that doctors don't tell you a whole lot about anything when it comes to Crohn's. What I've learned, I've learned from the internet, reading and looking at this website. When I was first diagnosed, my gastroenterologist told me to avoid stress and to try to get it into remission. He led me to believe that once it was in remission, I no longer had to take my meds, so I went without medication for 10+ years. Because he never told me what to expect when I was flaring, I went all those years feeling bad, didn't realize I was flaring, developed a stricture and couldn't go to the bathroom. Now that I look back, I can see the signs were there; I just didn't know what to look for (i.e. back and hip pain, reflux, nausea, fatigue, etc...). Anyway, I now have a wonderful gi doctor, but I find myself having to ask him questions about symptoms. I wish doctors were more forthcoming.

While I rarely have diarrhea anymore, I do have a lot of joint and muscle pain, nausea and extreme fatigue. On the weekends, I pretty much have to rest just so I can get up and go back to work on Monday. I've learned not to push myself and to allow myself to rest. It's no fun, but you do what you've got to do.:ycool:

 

[chattertess]

Now that I look back, I can see the signs were there; I just didn't know what to look for (i.e. back and hip pain, reflux, nausea, fatigue, etc...).

While I rarely have diarrhea anymore, I do have a lot of joint and muscle pain, nausea and extreme fatigue. On the weekends, I pretty much have to rest just so I can get up and go back to work on Monday. I've learned not to push myself and to allow myself to rest. It's no fun, but you do what you've got to do.:ycool:

These two bits are totally relevant to me. I've been having horrendous back and hip pain, reflux, nausea and fatigue - particularly over the last week or so. I didn't know if that was to do with crohns or not. Gosh I have a lot to learn lol.
I find it really frustrating to make myself rest, but I agree - its needed to store up energy.

Thank you for telling me about your experiences its so nice to talk to someone who knows what I'm going through.

 

[David]

Hi Tess and welcome! Thanks for joining and sharing your story

1. You mention Remicade. Have you had any infusions yet? If not, are you on any other medications?

2. Is the back and hip pain new or something that has been there for awhile?

3. Have you been tested for vitamin B12, vitamin D, and magnesium deficiency? I ask because all three are common in Crohn's disease and can lead to the fatigue you speak of. If you haven't been tested, I strongly suggest you do so.

We're here for you

P.S. Mmmmmmmm, cake. *drool*

 

[chattertess]

Hi David - thanks for the welcome and caring words

1) I'm starting my Remicade on the 17th October, and have previously only had one weeks worth of steroids, which did nothing. They did offer me the steroid route, but I felt that remicade might be a better option for me. The doctor recommended it too...hope hes right!

2) The back pain has been going for a while, but the really bad hip pain has been the last 2/3 weeks. Why?

3) Ooh very good point, I'll remember to ask for that. I do suffer with depression too, which I know is a lot to do with vitamin D. Thanks

P.s. Oh I know...mmm...cake...

 

[David]

1. Remicade is an excellent medication. I think you were smart to bypass the steroids if you're going to try Remicade.

2. If you haven't, mention the back and hip pain to your GI. They may want to do some imaging studies of your hip, SI joint, and spine as sometimes inflammation can occur there that's associated with Crohn's disease. If that pain persists or gets worse, push for such tests.

3. Vitamin B12 deficiency can lead to depression as well. Definitely ask for those three