Is this Crohn's coming back?

[tea_angie]

Hi to all. My name is Angie and I am a happy mom to a 7 year old girl and 19 month old boy. I am so glad I found this forum. When I first got diagnosed with Crohn's in the summer of 1999 there were definitely fewer resources available and certainly no forums that I bumped into. Although I was so sick I would probably have no energy to even look .

So here is my story: I got diagnosed after about 2 years of having GI symptoms that got progressively worse (despite numerous drugs I tried for suspected IBS) to the point that just before my diagnosis all I could eat/drink was Ensure. I did not experience diarrhea - quite the opposite. I finally forced my GI doctor to run some tests so they can find out what is wrong with me. (I think he suspected I had an eating disorder.) After a CT scan and later small bowel series I was diagnosed with Crohn's. What followed was several months of different medications: Prednisone, Pentasa, two Remicade infusions - nothing much worked. Twice I ended up in a hospital with blocked intestines. And finally I decided that surgery was my only option. In May of 2000 I had a small bowel resection and an appendectomy. Well that seem to do the trick for the next 11 years. In that time I gave up gluten and some other foods that did not agree with me and I was feeling great.

Now here is my current situation. Ever since the surgery I have had very regular BM 2-3x a day soft but not alarming. However ever since my second child was born in June of 2010 the BM started getting looser, and looser and...you get the picture. I saw my regular doctor for an annual checkup (12/10) and brought this up, but I am not a complainer and did not think it was so bad. In October of 2011 I went back and she suggested not eating any diary. Not much help. In addition parallel to the GI symptoms I started to have some pain in/on the top of my right pelvic bone - we figured with the doctor it was probably related to post pregnancy and carrying the baby on my left hip. But lately I finally put all this together (actually my Dad pointed out that I should do some research) and realized that it might be Crohn's coming back, except slightly differently than last time.

So to sum up: I am experiencing diarrhea (on and off - I started taking calcium supplement and it might be helping) and some occasional abdominal discomfort. When it comes to bones it is the pelvic bone, but also my knees, and right thumb (knees and thumb just started recently). In addition I have dry cracking skin on some of my fingers, which I now realize I have been battling for about 2 years now. All put together it seems like the Crohn's might be coming back. I am not sure if I am making it out to be more than it is. I know everyone is different, but at 36 I should not have all those symptoms without a reason. I am seeing my regular doctor in 2 weeks for an annual and will mention all those things and ask for a GI recommendation and possibly a rheumatologist. Both my grandmas have arthritis so I would not be surprised if that was lurking. I am a bit scared of what's ahead.

So here is a question: Being that my symptoms are not severe do you have any guidance on how to deal with doctors, what tests to ask for? And the biggest one of all am I overreacting? I will of course do more research but would appreciate some advice. Thank you so much for reading and any responses. I promise my next posts will be much shorter.

 

[Gabismommy]

It may be Crohns. I am still new to all of this. However, I don't think you are overreacting. It is wayyyy better to be safe than sorry not to mention you can catch it early do things don't get too terrible again if it is the Crohns. Good luck and welcome!

 

[Trysha]

Since you have a history my suggestion would be to get it all checked out by a gastroenterologist,preferably specialised in crohn's, they are the best doctors to define what is happening.
Crohn's never goes away entirely, it has a habit of creeping back when we least expect it.Also sometimes symptoms may not appear to be severe,and yet the crohn's can be quietly causing damage. Find a good GI and let them sort it all out for you.Some of your symptoms could be suggestive of Crohn's.A colonoscopy could be definitive.
Hugs and best wishes
trysha

 

[Angrybird]

Hello and welcome to the forum :bigwave: You are not overreacting. I don't think it is uncommon for your symptoms to change when the the crohns is starting to act up again, especially after such a long period of remission. The joint pain is something you can get with active disease and the pain and bm's are another indication that your bowel is taking issue with something. Problems with your skin is another clue. When you see you doc (although if you can perhaps bring the appt forward?) explain what is happening, put your foot down if you need to and say you want this looked into with proper tests, do not leave until they agree to have a look into this. I should think it has been a while since you have had a colonoscopy? I ask because I know some docs would suggest you have one of these if it has been a long time since the last one so they can check up on how things are inside. Ask about this, also bloods can be done to check for inflammation and mention that all your vitamin levels needs to be checked, us crohnies can be deficient in B12 and D and this can cause problems as well. NOW is the time to do this whilst your symptoms are fairly mild so if there is a problem they can sort it quick and ideally PREVENT a full blown flare that will mean nasty meds and scarring being left behind in your bowel. It is better to be safe that sorry when it comes to something as important as you health. Keep us updated on how you get on.

 

[tea_angie]

Thank you so much for your welcome and good ideas. I will ask for the suggested blood tests when I go to my family doc (I will move my appointment up). I checked around and unfortunately will have to wait to see a good gastro specializing in Crohn's for about a month. Untill then I will take better care of myself - supplements, better diet etc. And a lot of reading - especially on the forum (and hopefully some posting too).

Thanks again and I will update on my progress.

 

[Lisa]

Sorry I missed this post - welcome to the forum 'neighbor'.....if you haven't found a GI yet, I like the ones at Albany Med - one of the really good things is being able to get in there and see someone on short notice once you are a regular patient (I had a next day appt once due to some issues/concerns).....

Definitely get updated tests, and what was mentioned above - I didn't see, but have you had a DEXA scan done? That might be a good idea.....

 

[tea_angie]

Thank you pasobuff. I saw your posts before but did not realize we are close neighbors. I have an appointment on Feb 8 with a Dr. at Albany Gastroeterology Cosultants. I was considering Albany Med but they had a longer wait for first app. and someone from work recommended the other place (they've been going to one of the doctors for 37 years!). We'll see how it goes. And no I did not have that test done (bone density I'am guessing?)

So far I had an x-ray of the thumb - 'very early small spur forming...' - for sth. small it really hurt like crazy - it's better now.

I also had blood work done - everything seems to be fine. B12 levels are good. I don't think I had vit. D levels checked - will mention it to the GI doc.

Joint pain is a bit better now, but it seems to jump around. I'll write an update after GI app.