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just venting...Stelara cant get here fast enough-I start Wednesday-but feeling like crap again

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Crohn's Disease
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Posted 11/27/2017 9:56 PM (GMT 0)
Infusion is finally approved and scheduled for Wednesday. I had been feeling better, in fact no foot pain for two days! yesterday went on a 2 mile walk. SO I should be pleased, yes, but now I have another ulcer popping out on my tongue... SO, I guess here we go downhill again. this is how it has been for months. two or three good days followed by 3 or 4 bad days. well, sometimes, 7 to 10 days. What is interesting today i was working, so wonder how much stress really plays into this when you are flaring. I know how lucky i have been until this year . I have had the disease for 20 years and the past 12 months have been the worse. it started about this time last years and has been an utter mess with my system. I have lost 15 lbs. and just feel crappy most of the time with no energy.

I hope Stelara is the one to get these symptoms under control..... HEck at this point I will take that and worry about surgery later if it really does not work on the insides. The second surgery this past june seems like a breeze given how bad i have felt otherwise.

I do wonder when I should finally stop and start the process for LTD.
Posted 11/27/2017 10:26 PM (GMT 0)
I have read a lot of your history of everything you have had going on this past year. You had a pretty rough time of things. Hopefully Stelara will be the one to turn things around for a long time. My gi always called crohns a seasonal disease, he said spring & fall is when his patients had more trouble than any time of the year. He always had more patients that had to be put in the hospital during that time, I was one of them. He use to tell me, you all work me to death during this time, lol. I am well aware that stress cannot induce a flare, however, I worked at a very stressful job & most of the time the stress was off the scale. My dr was in agreement on this because he would see the shape I was in.

If you are considering the LTD just make sure your gi is on board with this. He will have to fill out forms on your behalf. These need to be addressed by him, not your PCP. He may want you to give Stelara a good chance to see if it improves your situation before agreeing on the LTD.

Take care.
Posted 11/27/2017 10:27 PM (GMT 0)
Good luck with Stelera. Stelera has been getting very good reviews. It seems to be the best anti-tnf, since Remicade. Hope it works out well for you. Please post your results.
Posted 11/28/2017 2:00 AM (GMT 0)
Thanks I will keep everyone posted. Any Ltd will not just be crohn’s based. I have other factors contributing to my overall condition. I have two things to watch right now. Stelara and the moderate to severe dialated ascending aorta and arortic root. I am going in soone for further testing on the aorta to see if it has grown.
Posted Yesterday 12:38 PM (GMT 0)
Had my starter infusion yesterday. This time had to go to a local home healthcare type place. But they were extremely nice. But it took 7 attempts to get iv started-felt like a pin cushion. Infusion was uneventful. Drove the 1 1/2 hour ride home. Today my whole body hurts and the pain is back in my left foot. The Gi has me during self injections every 6 weeks going forward.

I meet with my current PCP tomorrow then Tuesday I am back in my old town and meet with my old PCP who was my pcp for 20 yrs and the dec 11 meet with gi. Then we can decide next steps
Posted Yesterday 2:15 PM (GMT 0)
The word I keyed on in your post is "stress."

Absolutely stress plays a role in this disease. Stressors are what interfere with the body's ability to heal itself. Stress is why disease gains a hold in the first place. There are all kinds of stressors: stress caused by chemicals, stress caused by lifestyle, stress caused by nutritional imbalances to name a few.
Glad to hear your foot pain was gone long enough for you to go for a good long walk. Pain is yet another kind of stress.

You didn't happen to mention the kind of pain you experience. If your feet could talk they might tell you, for example, that burning, shooting pain, numbness, even sores-that-don’t-heal is that at a cellular level the nutrients needed to metabolize glucose are missing (this had to do with diabetes--another stressor).

I know this is a different perspective from the train of thought in your post. But this perspective is what helped my husband make his way from a Crohn's-center life full of ulcerations in his mouth and multiple surgeries to a life-centered life where Crohn's is no longer a blip on his radar screen.
Posted Yesterday 11:12 PM (GMT 0)
I've been on Stelara since May 24th after failing Entyvio (didn't do a thing!) and Humira (slight improvement but severe, screaming joint pain). My bowel disease is doing very well! I've had a couple of blips but have been able to pull myself out of it. I'm going 2-3 times a day all normal. urgency is much better. Most mornings I just use the toilet and go about my day. If I have a long drive sometimes I take an imodium but I think that's really to help my anxiety. I'm almost afraid to say I'm in remission but I think I'm heading that way.

Unfortunately, my perianal disease and fistulas are very severe. I'm afraid that in addition to bowel, vaginal fistulas I may have a bladder one......Stelara doesn't seem to have helped this....yet!! But I have to say I'm able to get on with life on Stelara!!

I notice that you're going every 6 weeks rather than 8. Is there a reason?

Good luck!!
Posted Today 3:01 AM (GMT 0)
Ubtough, glad it’s helping you! 6 weeks instead of 8 because, they are trying to get a jump on things. I had 5 patches of ulceration and inflammation already sine last resection surgery in June. Although I felt pretty good on humors (4yrs) my small intestines were a mess. So they really believe I and medicine resistant. The hope is I can start feeling better sooner although nothing may help the insides.
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