Stop pentasa before a colonoscopy gastroscopy?

[msbling]

Hi everyone,
I’m a newbie here but not to being ill.
I have a lot of autoimmune diseases including behcets which attacks the bowels, blood vessels and mucosa.
I’m in a very autoimmune state at the moment and my esr is 130. Supposed to be about 30. Crp is 1, so that’s fine. My serum IGa is also massive. Ie 27,000, when it’s supposed to be under 4000.
I’m anaemic and also have multiple other bloods gone haywire. Calprotectin is 137 so not hugely high, but I’m on imuran and have been for years, plus plaquenil and colchicine, all of which are supposed to lower inflammation.
I’ve been in a huge amount of pain with my tummy and bowels and am having an urgent colonoscopy and gastroscopy done in two weeks.
I’ve been on pentasa for a few weeks now and I think I’m starting to get a tiny bit of relief.
My question is: do I stop the pentasa some days before the exam ? I’m just concerned it may heal what’s happening before they get a chance to see evidence. I,don’t think it’s UC , but I think it could be Crohns or just a worse development of my behcets.
Sorry for the wall of text. Just a bit over it all and hoping this,time I get to the bottom of what’s going on. I also have osteoporosis and kidney stones and malabsorption due to years of this going on.
What do you guys think?

 

[Jennifer]

Hi msbling and welcome to the forum!

Your scope is in two weeks and you've only really just started taking Pentasa. Even if it is helping I don't think it will be enough to completely heal all of the active inflammation that may be going on before your procedure and even if it did there would still be evidence that there was recent ongoing inflammation in scarring. Pathology reports would give more evidence as well so be sure that they take biopsies while they're in there. So to answer your question, no I don't think it's a good idea to stop taking the Pentasa. You've only just started feeling a tiny bit better so that's a good thing. I hope that you continue to improve and I hope your scope goes well. Keep us posted.

 

[msbling]

Thank you so much Jennifer for your reply.
This chronic illness thing is tough eh. I’m 55 now,and have been sick since I was 28. The bowel stuff has been a lot worse in the last 10 years. I’m thinking I’ve got adhesions due to a scar I’ve got for a removal of an adrenal tumor. I’ve had colonoscopies before and they have noted inflammatory changes but wouldn’t give a diagnosis..that’s why I’m a bit antsy about the pentasa.
I’m basically on the brat diet at the moment too as I can’t handle food. A bit over bananas and apple lol. I would’ve thought I’d be skinny but nope. Arghh should’ve been a nice side effect from something ghastly haha
Thank you so much for your reply. It’s nice to have contact with someone who has been down a similar road. I can talk to my mum which is handy. She’s got an ileostomy due to bowel cancer at my age. I’m hoping I don’t end up in her boat, but whatever will be will be.
I appreciate what you’ve said and will rest a bit easier..and take the relief as it comes. :biggrin:

 

[Jennifer]

Well if you can't handle anything past the BRAT diet right now then the Pentasa definitely isn't going to make it so they don't find anything. Sounds like something is going on for sure. I hope it isn't any form of IBD and certainly not cancer. Adhesions can cause problems as well. I have some adhesions (suspected since all tests are normal) from my previous resection and I do have partial blockages from time to time and was hospitalized just a few years ago with a full blockage.

With a family history of bowel cancer I'm glad you're having a scope done and hope that you'll continue to get them periodically just in case even if you don't wind up with an IBD diagnosis. Best to catch that as early as possible. I'm happy to hear that your mom pulled through. Was she ever diagnosed with any form of IBD?

 

[msbling]

Well if you can't handle anything past the BRAT diet right now then the Pentasa definitely isn't going to make it so they don't find anything. Sounds like something is going on for sure. I hope it isn't any form of IBD and certainly not cancer. Adhesions can cause problems as well. I have some adhesions (suspected since all tests are normal) from my previous resection and I do have partial blockages from time to time and was hospitalized just a few years ago with a full blockage.

With a family history of bowel cancer I'm glad you're having a scope done and hope that you'll continue to get them periodically just in case even if you don't wind up with an IBD diagnosis. Best to catch that as early as possible. I'm happy to hear that your mom pulled through. Was she ever diagnosed with any form of IBD?

I have to say my adhesions can be awfully painful and at the moment it all wakes me up at night. Gosh you have really been through the mill haven’t you. I’m glad you are in a reasonable remission, but blockages must be tough to deal with, and very painful.
No, Mum was never diagnosed with ibd, but I think she did possibly have it as she had a lot of problems all her life and even now has hell with the ileostomy as she seems to have gastroparesis and lacks peristalsis. Her ileo seems to not behave like anyone else’s.
I did a Dna test and have about 50 genes that lean to crohns.
They are testing for cancer with me as my markers are pretty crazy. At first they thought it was myeloma but that seems to be off the table for now, but I won’t be surprised if I come out with a nasty diagnosis. All my lymph glands in my tummy are enlarged as well, but then that can happen with Crohns I’ve read..
At the moment I just want to know, then I can deal with whatever it is. I’m pretty used to grotty diagnoses..I will just add it to my list and hopefully swallow more pills lol
Got to say I am scared of more operations, especially gut ones. As you know, I think they are the most painful, and you are left with adhesions which cause more problems. Can’t win eh.
I look at Mum who is now 81, and she handles her ileostomy so well but for her, it really does limit her life...but can’t complain, as she survived!
Omg I’ve done it again, lol another wall of text. Rolls eyes oops

 

[Jennifer]

No worries, feel free to talk as much as you want on here.

Yes abdominal surgery is pretty awful. Now days it's mostly done laparoscopically so the healing time isn't as long and I imagine the pain isn't as bad or as long. Mine was laparoscopic with hand assist so I still have a decent sized scar across my belly and did have complications with healing which was awful.

I really hope you don't come out with a worse diagnosis. Really hope all is well. :hug:

We have a section in the forum for stomas if your mom ever wants someone to talk to about it as well. It's located here: http://www.crohnsforum.com/forumdisplay.php?f=46

 

[msbling]

Thanks for the link Jennifer, I will pass it along to Mum so she can have a read. This is,what I love about the internet..all the knowledge and support and understanding is there. When I first had my abdominal surgery for my tumor, there was no information or support or knowledge. It was super rare, so doctors always get a gleam in their eyes when they find I had one, but at the time it was awful with no support. I love that we can all share and help each other these days. It’s so important for,healing, and just life.
Thanks again, and ps your purple hair is stunning.

 

[Cross-stitch gal]

Hi. I just wanted to add that I'm on pentasa and went through a colonoscopy this past year. The day before when I was doing the prep I was still taking the pentasa. My doctor never said anything about it and it didn't cause any problems. I did wait though until after the colonoscopy (when I could actually eat something solid) to take that day's first dose.

 

[msbling]

Hi. I just wanted to add that I'm on pentasa and went through a colonoscopy this past year. The day before when I was doing the prep I was still taking the pentasa. My doctor never said anything about it and it didn't cause any problems. I did wait though until after the colonoscopy (when I could actually eat something solid) to take that day's first dose.

Hi Cross stitch gal, thanks for that. God I will be looking forward to this part being over and hopefully getting some relief once they know what’s happening this time. I’m looking forward to hopefully getting back on an even keel of manageable symptoms. I hope you are well in yourself. Thanks for your reply