So Many Questions

[Beebop]

Hi all,

I was diagnosed with Crohn's at the end of last year. It took me about a year to finally get a diagnosis and I am pretty sure that in that time I was flared pretty consistently. Results from bloods and camera indicate a high CRP and an ulcerated small intestine. Since being diagnosed I have done the whole prednisone thing as well as tried a couple of medications... I had an allergice reaction to Purinethol, horrible side affects with the steroid and am now taking pentasa...

Has anyone else found that the Pentasa gives them headaches?? Additionally this year has been shocking for getting sick with colds etc has anyone else found that their crohn's makes them more susceptible to illnesses? I have been shocking with taking my meds recently (bad I know but the head aches were crap) but now I have a really bloated tummy is this common? Its not painful as such but is uncomfortable and never really debloats anymore. As the pill was likely to not work because of the crohn's my doctor strongly recommended the Mirena and I am also finding it difficult to determine whether my problems are the IUD or the Crohns.... AHHHH!

Anyway any help would be welcome... I have a friend with Crohns and she has been an absolute blessing but our cases are quite different.

Many Thanks
B

 

[Keepingfaith]

Welcome to the forum! I am sorry your Crohn's is giving you trouble You are in the right place when it comes to support! The people here are great!

Meslamines & things like Pentasa are known to cause headaches. Pentasa is one of the 'milder' medication for Crohn's & it may take time to work. If it doesn't give you any relief then it worth mentioning going on an immunosuppressant or biologic.
Also, Enteral Nutrition has remission rates comparable to steroids and it has ZERO side effects. That's something to look into also.
Just by having Crohn's you have an increased susceptibility of getting infections. Even if someone who has Crohn's gets on an immunosuppressant, it doesn't make much of a difference as far as susceptibility. Bottom line:
You can either be sick with Crohn's by not taking any medication AND have an increased chance of getting infections or you can be in remission with Crohn's by taking medication to lower your immune system but still have an increased susceptibility to infection.


Take care!

 

[skippy111]

I still carry my Hospital ID bracelet in my wallet because it has my Patient ID number beings I am still in Post op care and taking prednizone.

I was told to keep it with me in case of emergency because of the prednizone. I am sposed to avoid sick people etc,

 

[Beebop]

Thank you both for your replies! So nice getting advice from people who are going through the same thing. I had never heard of eternal nutrition and will definitely look more into it as the side effects from prednizone were horrible. My specialist thinks I am ridiculous for doing my own research etc but I think it is something I will keep doing. I want to avoid prednizone as much as I can. At this stage I am pretty calm and the Pentasa seems to be working... I need to go and have another blood test to confirm this. The constant cold is not helping me feel overly great though. I am however a lot more positive than when I was first diagnosed... This was definitely not something I thought I would have to deal with at 23 years old. My poor boyfriend has really got the brunt of it as we hadn't been together long before I got diagnosed so it has definitely been a roller coaster ride. I am scared because since treatment I have not had a flare however there is no way of predicting when I will get one.

Thanks so much for taking the time to write some feedback. I definitely appreciate it

 

[David]

Hi there and welcome I'm so glad you found you way here and joined!

As previously mentioned above, medications for Crohn's Disease can lead to increased chances of infection, however, I get the feeling that you were getting sick prior to the prednisone. As such, I would strongly suggest you get your vitamin D levels tested if you haven't. When it comes to the immune system for stopping getting sick, there are few things more important than vitamin D and people with Crohn's Disease are VERY commonly deficient.

Oh, and when you get it done, ask for B12 and folate as well since Crohnies are often deficient in those too. Get them out of the way

Again, welcome!

 

[Beebop]

Hi David,

The colds etc have been getting worse since I have been diagnosed so will get my Vitamin D checked. My folate is good and I have had 5 B12 injections to raise that/

I am off the prednisone now so just relying on Pentasa alone. At this stage it seems to be working and I have been flare up free for almost 4 months...

Thanks for all your support

 

[bluebeary]

Pentasa was the first medicine I tried. It also made me feel bloated and uncomfortable. It didn't work well for me and I ended up switching to Remicade. It helps more than the Pentasa did for me, but I still have symptoms, such as joint pain. I have had to be on Prednisone multiple times and I hate it! I always have so many side effects!

I hope the Pentasa works out for you! It can be a hassle to have to try different things!

 

[Beebop]

Gah! Just got bloods back and my CRP is really high again... however they have no idea if its the cold or my Crohn's. This is why I find this illness so FRUSTRATING! I do think it might be the crohn's as my tummy is still bloated and not feeling right. Oh well at least its the weekend