To stay on this treatment, or not to stay?

Well, I had my problems with entyvio from the beginning?. This past summer, my veins were giving them many problems so the nurses suggested I talk to my doctor, about trying the entyvio injection pen, since they found great difficulty getting in the IV, but they really tried and I have to commend them for that. I have been on the pen now since the beginning of the year and everything was running smoothly administrating it. Now another problem has arisen, it's our Provincial Deductible which is very high for us, and has to be paid upfront by April, previously I believe that deductible was worked out between the 2 insurance plans, now we only have one, which may make it unaffordable to carry on? This has led me to think about how much Entyvio is really helping me, and is it worth it to keep using it, and while I do have to admit, that Entyvio seems to have calmed down the inflammation somewhat, it has done nothing for the diarrhea, the embarrassing excessive gas, and bloating, it is constant, I'm on Imodium daily. I have nausea and it is difficult for me to eat and maintain my weight. My peri-anal or rectal issues are worse. My joints hurt like never before, and I'm so tired, taking naps during the day? I should be grateful that the tummy feels better without the burn and pain, and I am,, I know Entyvio is a gut Specific medication, but it seems the rest of me feels worse, whether it be side effects of the treatment, or my crohn's is flaring up in different areas outside the gut, or maybe I am generally dilapidated?? Yet, I'm afraid to go off, incase I feel even worse? Advice needed, is this the best it gets for me, or should I be expecting more from my treatments?

Post Edited (dorri) : 3/20/2022 12:57:05 PM (GMT-6)

Hi 73monte. and thanks. I tried Remicade in the past, it didn't go too well. My doctor talked me into trying it again but after testing, they found I developed high antibodies towards it. I am interested in the Stelara, but I think financially it will hit the same snag financially as the Entyvio? Will have to look into it further. If I had a choice I would like to feel better all the way around. Thank you for the suggestion.

Thanks NCOT, yes, I was taking Questran before surgery and it worked almost every time. After surgery, nope, I still have the diarrhea so the GI doctor said it's not bile acid diarrhea, and to quit taking it. He said too many surgeries.

I get monthly B-12 injections because they removed an area that absorbs the B-12. Get regular blood work and my blood is out but the doctor said it's improving and not as severe as when I had to have transfusions before, so he's keeping an eye on it?
I am concerned that the narrowing is worse. The last surgeon who removed my ileostomy bag, told me I had more scar tissue and said he did the best he could, but didn't know if he got it all? He also informed me that he won't do anymore surgeries on me? I try to remain hopeful that it won't get worse?

Thanks Susie, I'm done with the infusions because of the vein problems and getting the IV in so I really would prefer to stay away from that, unless it's an emergency. I know that Stelara can be injected but do they have the pen? Is the normal injection harder to self inject then doing it with a pen?
I've had tests run for joint pain, and even seen a rheumatologist, his diagnosis was arthralgia and myalgia, but nothing specific to say I have any one type of arthritis.. I do have scoliosis, and also have occasional back pain associated with crohn's. When the bowel attack subsides, often so does the back pain, but according to the last tests my CRP is within normal range, so I think it would speak for the joints as well as the bowel? With the recent worsening of the joint pain, I want to see about it, but trying to stay away from doctors right now because our Health Care system is so congested and back logged because of Covid, but once it's up and somewhat normal, if pain is still there I will look into it further? If they don't see anything on the tests, then it's probably an entyvio side effect?

Thank you for that information. Yes, narrow, or small or collapsed or rolling veins can be such a problem in an IV world? I only had an occasional problem before, now the veins are a problem most of the time? I had a Temporary port put in after my last surgery during my hospital stay. It actually was very helpful. I checked and Stelara is available here, but said to be very costly. As of 2021, we no longer have an insurance plan to cover it? Will continue to look into it more. Thank you.