New and utterly overwhelmed

[Jaiyce]

Hi Everyone
I am newly diagnosed and utterly overwhelmed. In the past ten years since the birth of my daughter I occasionally had some pain with movements inside but attributed it to my csection....left it for years as it was not unmanageable. The last year and so has been a journey to health for me, I lost 90 pounds and decided to train for a triathlon. In the past 6-8 months though it was clear to me something changed..never normal movements and couldn't win between constipation and diarrhea. Finally after many appointments I was diagnosed with moderate Crohn's with a fistula. I have been told I require treatment and began Imuran last Thursday. My doctor has begun the paperwork for Humira as well. I just can't believe that I require all this and keep hoping its a mistake...my mind is playing tricks on me of "maybe he screwed up your chart with another's". I know, classic denial. My guts always hurts, I am very fatigued and in my head I know it's correct. I am really scared of these immune suppressant drugs and feel really gross. I woke up at 4am today feeling feverish (but I am not) and lots of joint pain. The worry is raising my anxiety. I am having a hard time even wrapping my head around what a fistula is...I have been chatting with family and friends but I feel like maybe I am talking about it to much...so I am really happy to find this group. Thanks for reading.

 

[guest78]

Hi,
I am so sorry you are going through all of this. it is a tough thing to get your head around. but it does sound like your reaction is very normal.
i was diagnosed 5 years ago but went straight in to "getting on with it" mode. i didnt talk about it much, didnt think about side effects etc i just took it as it came. this has meant that its only now, 5 years on, that its hit me what i actually have! so please do not feel that you are talking about it too much, or not dealing with it well. you are
anxiety is very common for such a huge shock and change in your life! I take meds for my anxiety, so if you feel that is getting too much then go and see your GP they can be so helpful. there are also IBD specialist counsellors around, which can help you wrap your head around everything.
I am on Humira and Imuran. They are scary scary drugs. but the alternative is equally as scary. the way i look at it, is i need these to stay alive and healthy. you wouldnt stop a cancer patient having chemo cos it may cause side effects, and i try to adopt that same mind set with crohns. the immune suppressant drugs do mean you are more likely to pick up colds/coughs and they can hit you hard when they do - but i havent found it too bad
I have also had a fistula - it is where a tract forms in to the wall of in the intestine. like a little burrowing tunnel. they sometimes solve themselves with the help of oral treatment, steroids or treatment. but there are other ways of treating them if they keep coming back. mine eventually has gone!
you are doing so well! please dont think that you arent if you need to chat about anything, then feel free to message me, i am more than happy to help if i can!
you will not always feel like this, even though right now im sure thats hard to believe. with the right treatment plan you can go back to feeling happy and healthy again! i spent 2 years virtually symptom free and will hopefully soon be back to completely normal soon!
keep your chin up!
xxxxxxx

 

[lizbeth]

hello glad you found the forum

I know how you feel, I was diagnosed last Dec and spent 2 weeks in hospital being tested for lots of things. I also have diabetes (on insulin) and found this new chronic condition on top of an existing one was devastating, so much so that I lost the plot the day before I was discharged.

Everyday is started wondering how many times I will visit the bathroom and if I go out will I manage to find bathrooms?

I thought I was getting healthy, I had lost weight and was exercising everyday, I thought I had pulled a muscle or something and that's why I was sore, however it appears not

My GI is considering immunosuppressants and/or surgery cos I might have a stricture, I just try to remember that it is early days and that I was able to accept and get on with the diabetes so will try to do the same with crohns.

Hang in there and don't feel on your own I'm new to this site and it's a Gods send :hug:

 

[mnsun]

Thought I'd drop a few pointers:
a) If you think the Imuran is causing joint pain, which wasn't experienced before, definitely tell the doctor. Some people have experienced Imuran induced joint pains, though it is a less common side effect.
b) In regard to fistulas, I would maybe consider fecal microbiota transplants (FMT therapy). Not sure if it's more widely available overseas as a treatment, but it is just getting popular in the States. I know others on the site have had fistulas close with FMT therapy, which could always be used in conjunction with whatever treatments you choose.
c) Maybe consider LDN which is becoming more widely acceptable as a less physically taxing treatment. It may also be used in conjunction with most treatments except in doses of more than 10 of prednisone. I'm not a doctor please research for yourself. Surf the site.
d) See "Success Stories">"MY Supps for MY Dis-Ease" for my diet leaning bias. Everyone has different food issues due to different segments of the digestive tract affecting the assimilation of different foods, but eliminating some foods could probably help most Crohn's patients. Milk, red meat and grains are just some of the foods most should experiment eliminating.

Best of luck and welcom to the community.