I want to ask you, what other kind of symptoms did you have prior to your resection? Did you have to run to the bathroom just a few times a day, or did you go more than ten times a day? Did you get cramps, abscesses or fistulas? Did you loose blood while having bms?
Could you please describe your symptoms, I would so like to find out what other symptoms you had, why did you get Humira? // Thanks a lot, from Bee
Hi BeeSting, I'm sorry it has taken me so long to respond to this message. I will also start a new thread specific to the jejunum to see if anyone here has any input/experience.
One caveat about my symptoms: I had extreme narrowing in two different areas - one in the jejunum and another at the ileocecal valve.
Historically, my crohn's gave me loose bm's. But within the past year, I was having C more often than D. Especially the 6 months leading up to surgery, I had to take miralax often, and eventually daily. With the C, I typically had to go at some point in the morning, usually after breakfast, and I would go anywhere from 3-6 times within a 1-4 hour window, and then usually be done for the day. Even though it was C, often the urgency was still there. Sometimes I would go more than 6 times, but 3-6 was most common.
I did not have any abdominal fistulas. I have had perianal fistulas for a while.
I did see blood ocassionally. Not all the time. But when I did see it, it would usually be towards the end of my final BM of the day.
In the past, I'd always felt my pain & cramps in the lower right of my abdomen. This time around, I felt it there AND higher up....upper left, maybe upper center, just below my ribs. More than pain, I felt bloaty, crampy there. I could hear the food and liquids passing with loud uncontrollable gurgling sounds. I received comments like "you must be hungry" from folks at work because you could hear it at meetings. Doctor thought it was a SIBO and gave me antibiotics, which cleared up the noises, and other SIBO symptoms I was having, but some of the pain and cramping in that area remained.
I have vomitted in the past from flares, typically from eating a food that was too acidic or disagreeable...my vomiting this time seemed to be from food backing up in the intestinal track. I was unable to ride amusement park rides or eat large (or even regular sized) meals without needing to vomit. In my opinion, I think this was made worse by the crohn's in the jejunum.
Why did I get Humira?
I didn't have much of an appetite. I was tired a lot. I started needing to go to bed when I got home from work. I was taking naps in my car at lunch. Anything to conserve energy to get through the day.
I started with a dose of prednisone (starting at 40mg) around mid-October last year for 8 weeks. I was 10 pounds lighter than I had been 1 year earlier. That usually helped me out. It did help at first. I felt better and gained a little weight. But weaning to the lower doses brought back the symptoms. By a week or two after weaning, I was a lot worse off. Doctor bumped me back up to 30mg for 2 weeks, then to 20mg. The 30mg helped for a week or two, but the 20mg was only mildly helpful.
That leads into why I started the Humira. 3 months after the 10 pound weight loss was noted, I had lost another 10 pounds...while on prednisone. Surgery was an option at that time. Actually, surgery was inevitable at that time. But I had an option with Humira to see if my body would get some response from that. There was some hope that medicinal remedy could put me in a little healthier state, which in theory would make the surgery and my recovery go much better.
So, first step was a huge pred bump to 60 mg. I was on 60 for two weeks, and then 50mg for two weeks. When I dropped to 40mg, I had a loading dose of Humira (4 shots.)
I dropped to 30mg on the 2nd dose of Humira (2 shots), then to 20mg with the regular dose of Humira. Eventually, I weaned off prednisone, and was holding "fine" on Humira. "Fine" meaning a lot of the flare symptoms/issues, pain, and a lot of the fatigue were gone, but I was still on a very low residue diet due to the strictures.
I gained back 13 of the 20 pounds and had surgery in a bit healthier state. I skipped my planned dose immediately preceeding surgery. 2.5 weeks after surgery, I started Humira again.
I hope you find some of this helpful? Are any of your symptoms similar?
Crohn's Disease for 22 years
Diagnosed in Feb 1989 at age 14
1 Resection: 4" at terminal ileum + 24" of jejunum - June 2011
Current meds: Humira (since March 2011)
Also take: monthly B12 injection, Calcium, Multivitamin