IS IT ME!!!!!!

Rant alert!!!!!! I have to say I haven't felt good since the first few doses of Remicade which is going back to 2011. Remicade stopped working pretty quickly, and Entyvio was also pretty quick as well. Humira was a joke, and Cimzia is turning out to be a waste as well. The last two Humira and Cimzia I have felt my worst, but I'm starting to think that maybe the way I feel is normal for the disease I have and that I'm just a big old pain in the ass to myself, my family and my doctors. I mean I have double digit bowel movements, all with blood. Some with thick chunks of blood. (TMI, but I have to express to get the picture across.) Some bowel movement with just blood, or bowel movements with streaks of blood. I have leakage, which I have to wear a pad so I don't soak through my clothes with blood or mucus. When I usually eat, right after I have to be around a bathroom. My stomach area aches and hurts from time to time. I barely have a social life, meaning I don't go out with my family (wife and 2 kids) because Im worried about the bathroom situation. Wife and Kids want to travel and I shiver at the thought of it. All I do is go to work, which in the mornings could be an adventure, and I try to plan my day around a bathroom. Is this normal, should I stop complaining to everyone and just suck it up and say hey this is life now. I'm going to see my GI doctor this Friday and the report is the same as last month still not feeling good, after he stopped 6mp and started 1mg injections of Methotrexate. My options are running super thin now. I suggested to him last month if he would put me on Stelara and he said that I would be the first patient of his on it. Which at this point I really dont care, just want to feel better. Is what Im feeling the new norm, should I just zip it. What other options do I have?

As the previous poster suggested. I too think giving Stelera a shot would be a very good idea right now. Stelera is having very good reviews right now. It seems to be much better than Entyvio.

Also agree, this isn't a normal quality of life that you should settle for. As tough as it might be right now, you really need to push you GI for some diagnostics. As mentioned secondary infections, c-diff, e-coli, all have to be ruled out. If you're losing that much blood everyday, you need to have a full blood screening done, white, red cells, hemoglobin, iron stores etc.

Lastly, I also think that a round of Pred. might be in order. It might be what you need to get back to a manageable state, then transition to a new immuno.

I'm sure you're hitting a low right now. Ranting is good, and well recieved on this forum. So many of us have experienced those toughest of times. Hopefully, you'll have better days ahead, and with the support of your family, get these issues properly addressed.

I like Stelara, it has allowed me to get off of antibiotics. It worked really fast, I felt better in a matter of days.

I go to NYP Cornell at the Jill Roberts IBD Center, I think they have a lot of patients on Stelara. You may want to take a trip there to get a 2nd opinion.

Do you have surgery and save a medication as an option in case you need it in the future? I left Entyvio on the table so I'd have something in case I got pouchitis after my surgeries, then Stelara was approved and I went with that because it works faster.

Can't do pred cause I'm also diabetic. I do go to Mt. Sinai and see A Dr there. I tried the antibiotics of flagy and Cipro but started with neuropathy. I'm going today to my GI in NJ and I'm going to push to be on Stelera cause Cimzia is a joke for me. I also haven't had a colonoscopy in a little over a year. Last August to be exact. I'm also going to ask him about that. Last time he suggested the pill cam. I'm crossing my fingers to see if something can be done. Thanks for all the feedback I really appreciate it. Sorry it took long to respond. Let's see what happens today. Appointment is at 1:30. Keep y'all post.

I'd highly recommend IVIG for anyone struggling.

It's okay; I've been there, I know what it feels like to be hospitalised and at the end of your tether :-/

I hope you can start the Stelara soon.

Yeah......not sure I agree with World Healing. Sure, we need vitamins and minerals, but I've had meds stop working even when I'm taking tons of multivitamins. And not sure that yeast is the cause of all diarrhea, which is what you've been saying on lots of threads.

Yay for no TB! Means you can take meds safely. That's a bummer about the stricture. Is it from inflammation or scar tissue? If it's inflammation, that would go down as your meds get Crohn's under control. If it's from scar tissue, then you'll probably need to have a dilation.