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kjeanb

kjeanb

Joined
Jan 25, 2010
Messages
11
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Hello all...

I was diagnosed with Crohn's about 4 month's ago. I have been suffering with it for about 6 years with multiple hospitalizations and 3 surgeries which were all focused on my female parts. After removing all my female parts, they finally figured out it may be something else. I had had a colonoscopy after the 1st hospitalization but it revealed nothing. After 6 years of suffering I finally had a capsule endoscopy which revealed inflammation throughout my small intestine.

My Doctor put me on Entocort and Pentasa. The Entocort seemed to take forever to start working but finally in the 3rd week I experienced some relief. After the course of steroids, I was good for about 6-8 weeks. A that point the troubles started up again with abdominal pains/fear of ending up in the hospital. I was then put back on the Entocort about 2 1/2 weeks ago and am just starting to feel better.

My doctor doesn't seem to want to give up on the Pentasa so I am wondering if anyone has had any luck with it. I have searched online for success stories and I have not found any. I'm anxious to move on to the next possible solution but my Doctor says there is no other drug to take since my disease is located in my small intestine.

I have missed a considerable amount of work-today I was only able to work a partial day because of pain and dizziness. Before this week I had missed almost 2 weeks during which I was on clear liquids.

I feel like I'm a wimp through all of this...like I should just try and suck it up and pretend nothing's wrong. I also feel more like things are getting worse instead of better. I try and keep a positive attitude but that proves to be more and more difficult...At least I don't have to worry about the barrage of tests (especially the humiliating female ones) if/when I end up in the hospital again!:p
 
:welcome: kjeanb....There are plenty of other meds to try. I wonder why the doctor said that. Is he a GI?...Please look over the treatment section of the forum. You made need a different steroid like prednisone or even an immune modulating drug like Imuran........

If your doctor isn't trying to find other options, I would seek a second opinon. Good luck, and if you have any other questions just ask.
 
I agree with IMP, if he isnt a GI, go see one. If he is, it might be a good idea to get a second opinion, there are tones of other meds you can try.
 
That could also be true, I know before the insurance company would alow me to be put on remicade I had to have not responded to others first.
 
I really appreciate you taking the time to respond to my thread. I was feeling really down tonight. It's amazing how many people tell me I have to eat to feel better and they don't understand that I can't eat. I would LOVE a steak with a side of pizza right now and a big bowl of popcorn with extra butter...perhaps some orange jell-o instead...mmm...jell-o.
 
Welcome to the forum :) I am surprised that you've been told that Pentasa is your only option? Most people end up on immune drugs at some point. make sure you talk to the GI about it!
 
OMG-I had a CT scan today...they discovered the camera lodged in my small bowel from when I had a capsule endoscopy back in September!

The Entocort wasn't working at all this time so we switched to Prednisone. Then Thurs I ended up in the emergency room just feeling like hell. Saw my Dr again on Monday and he ordered the CT for today.

They said there was a small chance this could happen. I meet with the surgeon on Thursday and will be having surgery on Friday. I am feeling a tad overwhelmed.
 
welcome aboard Jean

Damn that's not good too hear

how are they gonna rectify the camera situation?

Hopefully it works out for you
 
Hi Kjean, that is bloody scary!!!It is one of the reasons I am not in favour of having a pill cam as I tend to narrow. Whilst you have surgery will they do exploratory surgery and possibly correct anything wrong? I am on Entocort, and Pentasa, 4th go around, I find I can't stay on one drug too long, or it just stops working. Good luck on Friday, my thoughts are with you. Please let us know how you make out ok?? ((HUGS))!!
 
The one good thing about it is it has helped them determine one of the problem areas in my small intestine. It sounds like they will be removing that section but at this time I don't know much. I had the scan and was surprised to get a call from my Dr within the hour. He told me about the camera and that someone from scheduling would call me. I was so stunned I didn't even have time to come up with any questions. Shortly after that I received the call from scheduling to meet with the surgeon Thursday afternoon and they said to plan on surgery for Friday. My head is spinning and I will post any updates when I can.
 
I hope everything goes well for you kjeanb. When I had my camera pill I had to go for 2 x rays after to make sure it was out of me especially because it did not stay on throughout my system. I am surprised that they did not make sure after you took the pill with the pictures that they saw. I hope you feel better.
 
Oh my goodness...*good luck* - I hope everything goes smoothly and they get everything out that they need to (bad places and that darn camera!!!).
 
Good luck kjeanb. I guess this is why my GI ruled out the pill for me. I do tend to narrow up quite a bit.

Will have you in my thoughts for the next week or so until we hear from you.
 
Surgery is scheduled for tomorrow at 12:30. They will be removing part of my small bowel along with the camera. I don't know when I will be able update again after tomorrow...
 
:) I'm still in the hospital but somehow feeling better now than before the surgery. I just ate real food! There were 2 sections in my small intestine which were almost completely closed off. The camera would float between the 2 obstructions. When I would try to eat the camera would become lodged. After not eating for awhile it would float again. They removed that section of my small intestine along with my appendix which looked a bit odd on one end.

I am very optimistic after this surgery. The Dr. said I may have been like this since I was a child (which I agree with when I think about all the times I would get sick after eating when I was young)

I'm pretty tired now and I hope this makes sense. :)
 
Perfect sense buddy - thank you for the update. Wow- you had a "pill fish tank" hanging out in your gut basically!! Well - now we all know to advise people to either confirm they passed that pill or get an xray - kinda scary! I'm so glad they could remove it and hopefully all the bad spots. Hopefully you will be feeling *much* better once you get out of the hospital. Fingers crossed!!
 
Hi there, I was diagnosed with Crohn's and Colitis in October 2008 went to hospital had a Colonoscopy and endoscopy in the same night. They started me on 8 Pentasa, 60mg Prednisone, 50mg Mercaptoprine and 50mg Azathioprine all at the same time it was hell I could not think straight, over time I had 40 mg Pantoprazole and tappered the rest. In the last 2 months I got better so went down to 1 Pentasa and was going really well TILL I had a stresseful day and all pains came back, now on 4 Pentasa and 30mg Prednisone, Calci tab, calcitriol plus Paracetamol & Codine. On the pentasa I have not had alot of side affects I did loss lots of weight and felt a bit funny when started again got minimal hair gain. Just hang in there it will get better it might take a little time to get the mix just right for you. My doc wants me to stay on and drop down to 2 Pentasa a day and 1 Prednisone. Will let you know how it goes.
 
Kjean - thanks for taking the time to write from your hospital bed! It sounds like you will be feeling a lot better now. I hope you have a speedy recovery - but remember to take it easy and take care of yourself. GI surgery is major surgery! Don't rush it.

Good luck and please keep us posted.

- Amy
 
Sounds like your surgery went well...wishing you an uneventful and speedy recovery!

Cindy
 
That's wonderful advice, Amy! I keep forgetting how I didn't just get my appendix removed...also, there was a period of time after surgery where I was non-responsive. My poor parents! They had a TV hospital drama happen right in front of them! Fortunately this is the most excitement I've had in my life in years. (In the future I would like to make it more fun excitement)

I am home with them now and they are taking very good care of me. Yesterday had a bout of the flu~I wouldn't wish that on my worst enemy! Poor mom got to have it first so I knew what was coming. Now it's time to rest :)

Once again, Thanks fro all the support!
~Karen
 

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