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Jax
Hi everyone

I have only been on the site a few weeks and read a lot of what has been put in the forums. I have had CD since April 2006 and diagnosed October 2006. Getting an ileostomy March 2007 and 8 operations after that.

I have told a few of you a little about myself. I went for an MRI last week and have the results. The collection that was 6cm round is now only 1.3 x 1.6 cm. Meaning, in just a few weeks, it has decreased nearly 75%.

So apparently, the pain I am getting in the tailbone area is (what the docs seem to think) osteo-ilitis. Osteo of the sacrum. Apparently CD related.

Hope you are all well and thanks for all the useful information that is posted here. I love this site!

JAx
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First off, this is a pretty cool site with 33,101 members. Get inside and you will see.

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It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

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Create an account and you will be amazed.

lottagelady

Hi Jax, great to hear that things are progressing well, keep up the good work! Rach xx

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WOUNDED DOE

Hiya Jax and Rachey. Hey Jax, I have Crohn's Disease too and have had problems with pain in the tailbone area on occasion for many years, so this is interesting! Crohn's does so many weird things to the body, it's amazing. Do you have any pains and issues with light sensitivity? I am told mine is due to Crohn's. It's a really big problem for me... just curious. Keep us up-to-date with how you're doing.

lottagelady

Hi Doe/anyone - is it possible that I may have Crohn's or UC or something and we can't tell because I have an ileostomy - how would it present itself in that case, any ideas?
Rach xx

59rabbit

Hello Jax, I hope very much that all of your pain goes away.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
WOUNDED DOE

I have been told by my doctors over the years that many times people are misdiagnosed with other problems when Crohn's is likely the case, but that could go either way I suppose.    There are so many symptoms of Crohn's, and each individual is different...and the symptoms are so common among other things that it's sometimes difficult to know where to draw the line and make the proper determination on that.    People with Crohn's usually continue to have more problems with their upper GI plumbing but also experience a network of other problems like the common terrible pain in joints and muscles, sleep disorders, anxiety, fatigue, bleeding, bloating, blockages due to intestinal inflammation, fistulas (thank goodness I don't have any fistulas, had one when I was a kid, eeesch...) and a wide variety of other problems associated with the immune system being tossed out of whack.    Crohn's is still too much of a mystery really, even though we now realize that it is a wider spread problem than ever before.    When we have multiple symptoms and issues going on with our bodies, as far as a diagnosis is concerned.... sometimes it's    'Toss the dice'    I think    
lottagelady

Thanks, Sister Doe..... Methinks I will start a new thread on this one? xx

Gus
Read your new thread, Rachy.
eddie

Get better soon!!!!!!!!!!!!!
Eddie

Jax

Thanks everyone for replying. Pain driving me nuts at the moment and painkillers seem to be my best friend the last couple of days.

Due for my birthday party this weekend so won't be on much here.

Cheers and thanks again.

Jax

Doe, my eyes have improved as I usually wear glasses. My short sight is so much better than 4 years ago but unfortunately, it is impairing my immediate short vision. I used to be able to read a paper from about 5 cm from my face, but now that is blurry... Don't know if it is CD or not... Was told a few years ago, by the time I am nearing 40, if my eyes hadn't got worse they will reverse.... We will see.

lottagelady

Jax/Doe - What eye experiences are you having? My vision is so blurred that I went to the opticians and got a new prescription. I picked up the new specs a few days ago and I can barely see straight. It feels as though I have to refocus every time I move to look at something! Is that another Crohn's symptom? (I couldn't access that link you sent, Jax. Sorry.)

Take care, ladies. I look forward to hearing from you soon.

PS: Jax - Have a lovely birthday! It is mine next week and I have an eye screening in the morning and a doctor's appointment in the afternoon. I may squeeze in a sandwich lunch somewhere as a treat!!! xx
Past Member
Jax, you are a lovely addition to the community.

It's been 14 years since my ileostomy. My tailbone area gets sore sometimes, but probably because I don't have enough bum to cushion it!

The docs like to blame the vision on Crohn's, but I have found they are too lazy to research it. It's not directly related to Crohn's. Mostly due to the meds' side effects and long-term dehydration and malnutrition.

Crohn's-related vision issues seem to be lifelong and irreversible in my case. I've been in remission for 14 years, but the long-term use of steroids, diarrhea meds, and malnutrition have done my eyes in.

Our anti-diarrhea meds can cause sensitivity to light because our eyes are dilated. The steroids and anti-diarrhea meds also dry them out, as you can tell from when you take them and get thirsty.

Low B12, beta-carotene, and potassium levels cause vision problems.

For some, quinine is still legal. I took that for dehydration-related muscle spasms, and it caused permanent vision problems. Stay away!

By the way, you all should be seeing an ophthalmologist twice a year and not an optometrist for Crohn's-related vision care.

Peace, y'all.
Jax
Hi Lottage lady and Imperfect (and everyone else)

Thank you for the compliment. You have all made me feel very welcome.

I was told what I said above before my CD started. So, I am not sure whether it is CD related or not. I have just read on the internet about Iritis (eye inflammation - CD related) - http://www.avclinic.com/iritis.htm. Have a look at this and see if this helps you.

I love you all and you all have helped me inadvertently with your forums.

Cheers and it is the big birthday on Tuesday, just the party this weekend.

Jax
gutenberg
Hi Jax, so sorry to hear you're still having pain, but it was exciting to hear you were having an improvement in other areas, sorry I don't understand what its all about but I gather its an improvement, and if there's one thing we love to hear is one of ours is getting some improvement. All the best Ed
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