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Crohn's Disease Forum » Your Story » Seeking some support...


10-24-2012, 09:05 AM   #1
Raches5638
 
Join Date: Oct 2012
Location: Carlisle, Pennsylvania
Seeking some support...

Hi All- I apologize in advance for the length of this post. I was diagnosed with Crohn's disease in December of 2006, 6 months after severe facial trauma. I was kicked in the face by a horse. I'm not sure if the two are related or not, but I didn't have any Crohn's symptoms prior to this event in my life. For the past 6 years, I have gone in and out of remission, tried the Specific Carboyhydrate Diet, gone on and off of meds, refused to take meds, and just plain been in denial about having this disease. In February of 2011, I was hospitalized for 5 days & had 5 blood transfusions due to a massive internal bleed. I also learned after that hospital stay that I was pregnant. Luckily, during my pregnancy, my Crohn's went into remission, and throughout those 9 months life was glorious! The remission continued while nursing my daughter. Recently though, she has started to wean, my period has returned, and thus my usual symptoms have returned. (I don't know if anyone else out there found that to be a correlation, but for me my Crohn's was worst when it was that time of the month). Anyway, I had not taken meds during my pregnancy or nursing, for the sake of the baby & have always been very anti-meds, but this time, the symptoms are back strong, and I now have a new problem of severe joint pain (particularly in my knees, wrists, elbows and throughout my spine). I have called my GI doc to inform them, and they have changed my med from Pentasa to Apriso (partially to help with cost of the med, I think). I am determined to take the med as prescribed, something that I have not done well in the past. I guess overall, I am just seeking support....I feel like I get really down about this disease, and no one wants to sit around and talk about their butt with their family & friends. I want very badly to feel like I have a handle on my disease and to feel like I'm not alone in this. I'm particularly looking to connect with any other young moms who perhaps have had similar experiences to mine. Any support you can provide will be greatly appreciated. Thank you!
10-24-2012, 01:04 PM   #2
Angrybird
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Hello and welcome to the forum

Sorry to hear the tum is now acting up again on you, I will keep fingers crossed the new med can sort things for you. Did your doc confim whether the joint pain is down to the crohn's flaring? Do you know if they have done any type of checks on your vitamin levels?

There is a lot of helpful info and support here for you so do have a good look around.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
10-24-2012, 01:34 PM   #3
Raches5638
 
Join Date: Oct 2012
Location: Carlisle, Pennsylvania
Thank you so much for responding. I am finding this forum to have lots of good information, and I think it will help give me the support I am looking for. I am trying to find a local support group too, to have some local connections.

As far as the joint pain and connection to Crohn's, I'm just assuming it is connected based upon what I have read and how the pain is associated with flares & other symptoms. I did tell my doctor, and have scheduled an appointment for a month from now, but that was the earliest they could see me. He started me on a new med, so we'll see how that goes for this month, and I am also considering going back on the SCD, because that certainly helped me feel better when I was on it before. As far as vitamin levels, my guess it he will probably run some new blood work when I have an appointment in a month, but I can't know that for sure.

I think it's so cool that you're from the UK. I mean, I can see from looking on here that people are from all over, but I just think it's so neat that we can find support from people across the world. Congrats on your pregnancy!! I hope that everything stays calm for you. It did for me, and I loved every minute of it.

Thanks again! Have a great day...well, night where you are!
10-24-2012, 01:46 PM   #4
Adam1971
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Hi there. Welcome. I was wondering where your crohn's is focused. I ask because sometimes people who have crohn's in the small bowel are given drugs likes pentasa for their illness, even though its really only effective in the colon. I just wonder if treatment options might include other medicines if this is the case for you.

Best wishes.
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-Adam

dx Crohn's in TI March 2012

Surgery on Dec. 11th, 2012-Ileocolic resection

Remission since surgery- a true blessing
10-24-2012, 02:08 PM   #5
Raches5638
 
Join Date: Oct 2012
Location: Carlisle, Pennsylvania
Hi Adam-- Thanks for your reply. Crohn's is in my terminal ileum, as well up higher where the stomach connects to the small intestine, the duodenum. So, yeah, according to what you're telling me Pentasa (and likely Apriso, since they are similar) won't even release until the colon? I wonder why they would prescribe that if my Crohn's is higher in my intestinal tract....
10-24-2012, 02:26 PM   #6
Adam1971
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I wonder too. I figure that if you're gonna be on meds, better aim at the right place
10-24-2012, 02:39 PM   #7
Raches5638
 
Join Date: Oct 2012
Location: Carlisle, Pennsylvania
So how should I question the doc on this? I don't have an appointment until a month from now, and had hoped that I would have a month of "data" being on this new med to let him know how it was working....Pentasa never seemed to make much of a difference for me which is why I had a hard time taking it as prescribed, but I had been pretty determined to take the Apriso as prescribed. Any advice as to how to proceed? I'm sure my doctor's office thinks I am currently crazy...but just trying to feel better, and since nursing my daughter, not take anything that will harm her.
10-24-2012, 04:49 PM   #8
Angrybird
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I would go to them and explain what you have learnt about this med and see what they have to say. They may see it that other folk with issues in the same area have found improvement on it - at least if you have been taking it and still have problems they can't argue with this. They should certainly be supportive and understand your concerns, make sure to ask them to check your vitamin levels as well. If you are worried about forgetting anything write down a list of questions as they come to you and take it with you to the appt.
10-26-2012, 08:47 PM   #9
David
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Hi there and welcome to the community Thanks for joining and sharing your story.

Pentasa and Apriso both have the same active ingredient: mesalamine. The difference between the two drugs is where they are released in the intestinal tract. Pentasa will treat pretty much the entire intestine whereas Apriso releases its medication at pH ≥ 6 so where it is released is entirely dependent upon your intestinal pH.

With that said, I'm not surprised they haven't done much for you. While they do help some people improve their symptoms, Pentasa and Apriso aren't actually approved for use in Crohn's Disease because the data for them just plain isn't very good. If they're not working well for you, definitely discuss changing medications with your doctor. It sounds like something more powerful might be in your best interest but an evaluation of your current disease state would help determine that.

All my best to you.
10-27-2012, 05:13 AM   #10
Eilidh
 
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Hi there, I was just the same as you! Pretty much in denial for the first couple of years and was awful at taking my medication! Every time I started to feel better I stopped the meds and ended up on and off steroids. My last major flare up was 2008 which was a month in hospital, it gave me the kick up the bum I needed lol! I was also on Pentasa but just wasn't working for me so started on Azathioprine in 08 and it has been great. Fell pregnant in 2010 and felt wonderful the whole time. Must agree though for a week before my period is due and the whole time I have my period my tummy plays up, and I get terrible back pain, then completely disappears when my period goes, weird! Having a bit of a flare up just now but thankfully nothing too bad. Hope you start feeling better soon
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