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|Posted By : U B Tough - 10/3/2017 9:54 AM|
|I've been pretty bed ridden by weakness since last Thursdays IVIG. 10 days previous I had my 3rd Stelara infusion. I'm still having formed bm's ---1-3 although they are purging types. Like bowel emptying. I actually can't believe how much is coming out!! Today I woke with terrible heartburn and indigestion, which is usually a sign that I will flare. My 3rd morning poop was urgent and looser. There's a really foul smell over the last week. I thought maybe it was because I was adding new foods and trying yogurt again but |
My heart is racing, I've been chilled and finding everything (including following up here ---sorry plucky, NCot & Clo) very difficult. It's like all my energy and brain power is being used on priorities; groceries, dog, chores and then I can't function at all. I've also noticed a very sharp decline in my cognitive function. I'm getting words mixed up or can't find them. My concentration is incredibly poor. ADD times 1000!! Fatigue is at an all time high.
Other than fistulas bowel was doing well, but of course now I'm so worried. Don't know if this is an interaction between IVIG and Stelara. I just know what IVIG always pulls me out of a flare, stops one or at least makes things better. This is strange and worrisome.
NCOT---regarding netflix here are my recommendations: Master of None, Scandal (!!!), How to get away with Murder, Lovesick (formally Scrotal Recall), Grace and Frankie and if you can stream watch HBO's Pretty Little Lies with Reese Witherspoon. It's a miniseries that's just amazing.
Plucky---how did your appointment go?
Clo---how are you doing?
|Posted By : NiceCupOfTea - 10/3/2017 3:56 PM|
|Foul smell could indicate an infection - get checked out for pathogens! (esp c. diff)|
I absolutely feel you on the cognitive decline part.
If it's any comfort, even science has found that Crohn's makes you stupid: /www.sciencedaily.com/releases/2016/08/160824140049.htm
Cheers for the recs. I need to get on it. And would if I could stop wasting time on the internet and playing video games <_<.
Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
|Posted By : gumby44 - 10/3/2017 5:13 PM|
|If you get Rake on Netflix in the UK go for it.|
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!
5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.
|Posted By : U B Tough - 10/5/2017 8:05 AM|
|It's not c-diiff. This is my usual sign of a flare. |
I feel very sad and hopeless. Had an accident just now at home. Stool is bright yellow/gold which also indicates a flare. It's so weird how things were improving then suddenly changed after IVIG. Maybe it destroyed the stelara??
Last night my fistula started to drain after 3 weeks of being dormant. Today it's very painful.
Anyone know what's next medication wise if Stelara fails? I don't think I'll ever reach remission.....
IVIG (on hold)
UC/Crohns - tested positive for MAP antibodies & mycobacterium
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran
Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.