Feeling so depressed and scared

I'm not going to be much help in the drug area because I failed them all and because of that I just wanted to say if you run out of med options that surgery can be a blessing in disguise. I had j pouch surgery five years ago and it's been a life changer! No UC, no meds, no doctors.....got my life back. I was sacred and totally depressed at one point as well but there is light at the end of the tunnel. All the best....hope the Humira kicks in.

Did you get checked for C diff?

I was down to entyvio as my only option and unfortunately it didn't work for me. Can you try 6mp or imuran? I had remission with 6mp for a while. Only a year or a year and a half but it was nice... I just feel like in my case, was it worth it? I ended up having surgery anyway, if it was going to come to this, i might as well have done it a while ago. At least i had some time to learn and prepare I guess..

Carioke65 said...
Hi! I have had UC for 11 years , usually it was proctitis and the flare didn't last that long. This colonoscopy in July, showed my UC has spread up 18 inches. In the past high doses of Prednisone didn't work, tried Remicade, I can't tolerate the Mesalamines, went on Humira last year for a flare- had to stop due to severe injection sight hives.
In a very bad flare-now, so before trying Entyvio - which is extremely expensive, my Doc said try Humira, again. Had my third shot and today am so much worse. If it is going to work at all, about how long does it take to kick in? I have no quality of life- and I don't know what to do.

Hi Carioke65,

I empathize and completely understand how you feel, but alas cannot make comments about your drug therapy as I know nothing about them.
I was diagnosed and hospitalised with UC when I was 31, recovered after being given intravenous pred. and oral sulfasalazine, hence managed to avoid surgery, but I was told it was touch and go at one point!
Now I'm 61 and having problems again, but not having access to quality modern drug therapy I am having to use diet, TCM (traditional Chinese medicine), and probiotics in the form of Yakult.

Can I suggest that you look carefully at what you are eating. You'd be amazed at what can cause flare-ups and aggravation to your gut on a daily basis.
I have had to cut out lots of things to help me stabilize my condition.
Also eat smaller meals and often. Eight small meals is better than four big ones when you have a damaged gut, and never eat late, meaning after 9pm.
A few suggestion as to what may be causing trouble are:

Beef, anything fried, too much fibre, too much animal fat (butter, cream, cheese), coffee, ice cream, fish that have no scales, squid, biscuits (which are terribly high in sugar) as well as cream cakes and doughnuts covered in sugar with sweet filings.

If you fry food I suggest you stop and turn to steam or water for cooking. However if you really must fry use high quality extra virgin olive oil as this is bio-degradable and hence less damaging to your body.

Hope I have helped in some small way.

Regards

I was diagnosed with 90% colon UC in 2010. I too have been thru the drug regimine and recently humira. It is definitely on my hate list _ extremely painful. If you are in the US you can ask your Doc about tofacitinab. It is a biologic but pills not injections. Not available in Canada yet. Also, try the SCD - sugar, starch, qrain & lactose free diet.

Humira was a bad drug for me. I was on it for 3 months last July-December. Within 2 weeks after the first loading dose, my feet were incredibly painful to walk on. I work in healthcare and would cry when I got to my car because of how bad they hurt. I ended up with neuropathy in my feet and my cramps started to return which never happened with remicade. Cramping for me means impending doom so I'm confident I would have flared had I continued. I told my doc I wanted to stop it and return to remicade. I was feeling worse and worse after each injection and I remember my last injection gave me a huge hive and my doc made light of it and said take a benadryl.

I'm surprised your doc had you try humira again. The hives you had are an allergic reaction. Now that you've been exposed to humira, a second exposure can produce a stronger allergic reaction. I would ask to stop humira and move on to entyvio. Yes, it's expensive but so is remicade and both have financial assistance programs.