New here and scared

[tkdrew2002]

Hello. I'm so glad I found this site. I've had trouble for years and they finally found Crohn's while looking for kidney stone on abdominal CT. I had colonscopy and small bowel follow through to confirm. So far I'm on Pentasa and Entocort..tried Predisone and it was awful. How do people afford their meds? I felt a little relieved when they FINALLY found what was wrong with me after all these years but now I feel like the real battle just started. I feel worse since I started the meds. I told them and that's why they changed steroids. I go back to GI the 6th of May. Hot flashes, acne, joint pain and cramps, worse BM's, worse fatigue and worse pain. Is it the meds or Crohn's in general? Its only been about 2 months since I was diagnosed. I'm so scared and depressed. I'm 31, married to a great man and have an incredible 7 year old son. I want to get better so bad. If not better, at least closer to "normal" (whatever that is). The dr. hasn't talked to me about diet, pain control, what to watch for...HELP! Oh here's another kicker, I'm also being treated (for about 3 yrs now) for possible Interstitial Cystitis. Now I'm wondering if Crohn's can affect bladder. Any guidance or advice would be so appreciated. Thank you guys so much for reading this. Hope everybody is having pain free day

Thanks again,
Kristi

 

[soupdragon69]

Hey Kristi,

Welcome to the forum!!

Crohns can impact on all sorts of things you would never dream off so the bladder aspect may not be so far fetched! Joint pain can be another one so it may not be the meds alone.

The acne is liable to subside once the steroids are stopped - there is hope on that front you will be glad to know!

Fatigue is part and parcel and its one you will have to trade with daily unfortunately and it partly comes from not absorbing your nutrients well due to gut wall damage with the crohns. The good news is that can improve once your meds get the inflammation under control.

As a result diet can play a big role in helping you to feel better over all and alot of us find that plain easily digested foods help on that front. Have a look at the foods threads on the site for ideas..

Pain control is important because if you are in constant pain it is draining so make sure you have a plan from your GI to help you. Stay away from NSAIDs such as Ibuprofen, aspirin and Voltarol as these kind of drugs can cause gut ulceration in general and compound crohns ok?

You might find your crohns impacts on your monthly cycle too and there is even a thread about that too here somewhere!

Have a good poke about through the site Kristi. Improvement is possible honey. Take it one day at a time. Keep asking us questions, keep asking your GI team questions and make sure you are happy with the plan decided upon at any one time. This is YOUR health and quality of life so make sure you flag up what you feel is going on and how you feel ok?

We will always listen here - may not always have the answers but you will find we understand totally what you are going through.

Welcome again. Looking forward to seeing you around ((hugs))

 

[tkdrew2002]

Thank you so much Jan. I hate everyone here has IBD or IBS but I'm so happy to talk to you all. I've had a hysterectomy they left ovaries, but on hormones for PCOS. Yeah, I'm a walking jackpot for doctors. I'm going to have to talk to GI about pain control, I deserve a better quality of life..we all do. Right now I stay in pain to the point I'm doubled over, scared to go too far from my house. Maybe GI and I will be able to come up with plan that works. I've even wondered if I need B12 shots. Thank you for replying...message me anytime. I can use all the friends I can get..especially ones that understand exactly what I'm going through. Hugs :mademyday:

Kristi

 

[Tina]

Welcome! Your symptoms sound alot like mine were before. I'm on Remicade now and it has helped me tremendously. I hope your GI is able to help you control your problems. It make take some trying out different meds, but I hope it's not too far in the future for you and your family's sake. It's not an easy road but we are here for you!
Lots of

 

[Cookie]

Hi Krisiti,

Welcome to the forum. Sorry to hear of your recent diagnosis. Hopefully you will find a lot of answers to your questions on this site.

I don't know anything about Interstitial Cystitis, so this may be totally off the mark, but with Crohn's, you can form fistulas between the bowel and adjacent organs, so it may be worth asking your doctor about? On the other hand, it may be totally unrelated, but I just thought I'd mention it.

Best of luck to you in finding your relief!

 

[Stleger88]

whats up man, welcome to the forums!

 

[Guest]

hi Kristi, & welcome

i know it can be scary when you first find out you have Crohn's. particularly if you've never been close to someone who has it, and you don't know what to expect. like others have suggested, i'd say have a good old mooch through this site, especially the diet threads - eating the 'wrong' or trigger foods can really make the pain and symptoms worse, so it's worth noting the foods that other's have found they can't tolerate. also, would it be feasible to request an appointment with a dietician at your hospital? if it's something you can afford, then i'd say go for it, even if it's just one appointment. diet & nutrition are a big part of achieving a stable balance with Crohn's.

glad you found us! i hope the doc can find you a medication which agrees with you and helps your symptoms quickly.

 

[tkdrew2002]

Thank you all so much!! I'm so glad I found this site. I called my doc yesterday, left message, nurse called back today and asked a few more questions and said she would call back and of course she didn't I hate when doctor's offices do that. It makes you feel like your not even a person..just money to them. Anyway, I appreciate all of you, I'm here if anybody needs anything...I'm a good listener. Hope everybody is having a good day.

Hugs,
Kristi

 

[karisue]

Hi Kristi and welcome on board !!!

Like yourself we all have felt what you are feeling, but we are all here and you can say anything on here and people are so helpfull as we have all got different or the same experiences with this dreaded disease. I find its a place for us to go, crohns and all the meds can really get you down and depressed, but on here we try to cheer each other up, and when I've finished I always come off feeling a bit better as though I've had a bit of a lift. I think from first knowing you have crohns I think we go through all the emotions you can think of. Anyway hope to see some more of you on here,

all the best

 

[My Butt Hurts]

Hi Kristi and welcome!
It can sometimes take a little while to figure out the right meds to help your symptoms. Hang on, they will get it. Your appt is coming soon - hope you feel better!

 

[ladyB]

:bigwave:

Welcome to the forum.
It takes some time till the docs find the right drug for you.
But it seems you have a great support system at home.
This is a great place to come for info and support.