We had a rare spring ice storm last week that I thought would kill off the spring bulbs, but it hasn't. They are just coming up and depending on the weather may bloom in a week or so. I've started growing beans, chives, tomatoes and sunflowers for my balcony pot garden. first time I'm doing these from seed.
How am I? Well, I'll try and be succinct by hitting the highlights
- bowel---the combination of IVIG and Stelara is working very well. A few minor blips but likely due to all the new foods I'm devouring. I've gained 35lbs since this time last year when I started. Generally going 2-3 times, all normal, little/no urgency.
- cons---side effects of Stelara are brutal. I've had everything....now suffering with joint pain (knee) that is like someone set them on fire. At times bed ridden and tearful. Had my last infusion 2 days ago and I'm nauseous, headachy and the knee pain just started again within the hour
It was pretty brutal and intense but it seems thats the way with me. I'm considering stopping Stelara as it's THAT debilitating.
--Fistulas----fairly quiet with a blip once in March. I have frequent butt pressure pain but no more drainage. I rub the fistulas with tea tree oil when it bothers me. Great improvement over the tragedy that was 2016/17.
--Life----hit hard with depression when knees went to pot....felt like I couldn't catch a break....that everything about
this disease is extreme and painful. Being unemployed is very hard on my self esteem/worth etc. Approaching "middle age" (YIKES!) and don't believe I ever really had a chance with both parents having IBD (Why procreate???) I have an MA and managed a bit of a career and a strong comeback after PG but couldn't work with flaring and anxiety.....now fistulas and joint pain.
However; I am extremely grateful for what I have accomplished over this last year. I'm eating fresh oranges and carrots, apples, grapes etc... WOW! And peanut butter! Even buckwheat. All things that I avoided like the plague. I've also had a mini vacation, hiking with my dog and walking 6000 steps a day. I'm doing my best in ballet and socializing. Even went to a bar to listen to live music last week!! Anxiety is less but if I'm going hiking I'll take an imodium for insurance. Without IBD I wonder who I would have ended up?? I'm laughing more and trying not to think of health 24/7 as I need a break. I also found that as my 1 year anniversary approached for my 6 week hospital stay from hell, I was experiencing PTSD. Really bad time to start knee pain! My dog is doing so well and I'm loving her to bits. I don't think I'll ever return to work/school to upgrade my skills. I've thought about
driving for Uber but my knee pain almost makes it impossible to press the peddles
I think disability will always be hard for me to cope with. I have a fiercely independent streak and was a biz owner....now....I'm the Goddess of Domesticity. (That's my official title now).
Regarding MAP---Canada Mark was a gem in getting that started for me. My GI actually arranged the blood test with his nurses, otherwise no other lab would do it for me. My GI is extremely supportive. I sent my vials off to NZ and got the report back in 6 weeks. I tested strongly for MAP. (I can send the results via email if you're interested to know what it looks like). I suspect that you'd also test positive given your complicated case too. I'm scared of the side effects of the abx combo. It's very harsh. I'll try and hang on to Stelara as long as I can in effort just to get within reach of the vaccine.
Good question. I don't know if MAP protocol would help with the systemic manifestations of CD, like PG, uvetis. My uneducated guess would be that it would help to rid all the bacterial causing the inflamm in th first place. My PG was treated with abx but not at any MAP protocol which would be different. The abx didn't touch it. I'll post asking Canada Mark.
Coincidently, we were both dx in 2000 although I was struggling for 10 years prior. It's been with me since I was 16 and I'm tired of this roommate hanging on to me. I want to live!!
End of rant
Just very grateful that I've had some respite and am more stable. Even planning trips....projects around the house....eating glorious food, my hair is extra thick and curly ....lots of good things happened. Just need to decide when to do abx and if it's worth the risk of unending d. I don't really want to rock the boat.
Will you still be planning your trip to CR?
Nice to hear from you again Miranda.
This didn't end being succinct, did it? LOL