Jennifer’s Current Ulcerative Colitis Symptoms:
Currently, I have been in a flare for over a month, has been on going for several months.
Alot of abdominal pain, bloating, fatigue, blood in stool, frequent porclin visits, depressed and literally feel like a prisoner in my body.
Hello My name is Jennifer
I suffer from Severe Ulcerative Colitis, for over 14 years. Over the last 5 it has been really rearing its ugly head. Last year 14 hospital stats, 12 blood transfusions and close to death. Several different attempts w Meds, Asacol- 4 daily, Remicaide, Humira, MP6- (Mercaptopurine) – 50 mg 2x , Frequent uses of Prednisone &probiotics.
Diet change, Therapy, Depression meds, & anxiety meds.
My doctor Said he was at his wits end & started to discuss a colostomy and referred me To Robert Wood Hospital.
Well my last hospital stay , I was rushed to the hospital with blood levels (red hemoglobin) of 4.2 and in bad shape, my body was starting to form antibodies to the blood, formed antibodies to Remicaide, ironically I did not go to my usual hospital in which my Dr. Practices and My primary Dr. was very determined to get different results, he then consulted with a few other Dr.s Oncologists, Nutritions, & Another G.I Dr, who’s speciality is specifically Colitis and Crohn’s.
He reviewed my records, got with my former Dr. And to work he went.
He said a colostomy is far from his solution and to trust him and together we will find a different solution,
He started to wean me off the prednisone and explained prednisone is not healthy long term and was determined to get me off. Kept me on the Mp6 50 mg 2x daily, started me on Humira 1 shot twice a week, apriso 4 daily, iron infusions, diet change and yoga.
I was finally starting to feel good, no more frequent flyer miles to the porclin potty, a normal stool, in which I haven’t seen in years, no more blood in stool, gained weight , I began to feel Normal again, I felt as if I was breaking free of the jail I was in, MY BODY.
Until about 2 -4 months ago, life hit hard and I’ve been in constant flares, back to jail -trapped in the house & feel like my body’s holding me hostage again.
Humira was working great, was healing the ulcers in my colon , -which my last dr. Said my colon basically looked like chop meat, and didnt see hope.
Humira started to make remission look possible.
Well my body is working against me yet again.
When I started the 6-MP, I started to lose TREMENDOUS amounts of hair, I decided to stop that med. Curious to know if anyone on this med also had this problem???
I’m trying to stay positive, doing prayer & meditation but it’s hard to stay optimistic sometimes..
I just had blood work done , anemia is gone, blood levels are the best I’ve had in years, but the flares are frequent and I’m very tired.
Just went for a cat scan and my Dr. Said he did not like what he saw, so I’m kinda delaying the inevitable and avoiding the results..
Praying for the best, putting my big girl pants on and going to get results and continue to surrender to this disease. I can’t, he can I will let him.
Currently on Humira 1 injection every 2 weeks, Apriso 4 daily, Mp6 – 50 mg 2x daily, probiotics, No raw veggies, no gassy foods, cut back on caffeine, no greasy, fried foods , no popcorn , no seeded foods, no fast food.
Prayer, meditation & yoga.
Try to avoid stress and aggravation as much as possible…
written by Jennifer B
submitted in the colitis venting area