Hi all,

Well, after doing super well on the Humira, I've been having some issues the past week or so. I still feel good overall energy wise, but something is definitely off w/ the pouch. I have this dull achey pain in the lower left part of my back that sometimes radiates to the abdomen. I used to get this ALL the time before they diagnosed the CD and I had a stricture too. I don't think the stricture is back because I am passing thick stool and I can't feel one when I examine myself. That's not to say there isn't one higher up though...Anyway, the back pain is annoying and it definitely feels better when I can get totally empty or pass gas. Heat helps too. Thing is, it has been harder to acheive that empty feeling, especially in the mornings or at night. I am definitely making extra trips to the bathroom. I emailed my doc, who is out of town at an IBD conference, but his nurse said it sounded like I may be having a flare of pouchitis. How is this different from a flare of CD? I have never understood the distinguishing difference in that. And if there is a difference and it is pouchitis, why isn't the Humira taking care of it? It's all so confusing! Any advice would be greatly appreciated!

Thanks.

Are you on Humira dosing every two weeks or weekly? Some people need more frequent injections. I happen to be one of them and I take it weekly. I just am coming off a failed experiment of returning to injections every two weeks. I lasted one month before giving in to the conclusion that my increased back and joint pain was not coincidental.

Initially, I did fine with every two weeks, then I plateaued, then backpeddled on my AS symptoms.

However, if this is simple pouchitis, and not IBD related, then a short course of antibiotics should fix you right up. Are you sure that you do not have IBD related spondylitis (sacroiliitis) in addition to your Crohn's? Doesn't matter too much, as the treatment is the same.

Jan

I don't think I have AS. It's never been suggested, though I wonder. I truly think it's just the pouch-whether it be pouchitis or CD. I have been doing the Humira every two weeks and my doc has mentioned in the past that I may need to change the dose to every week...
How will they determine if it is pouchitis or not? I doubt he'll scope me and I don't want to take unnecessary antibiotics as I'm already on Xifaxan( 3 pills twice a day). Pouchitis isn't caused by eating too much sugar or starchy foods or anything, right?
Also, would you advise using a daily probiotic like VSL? I eat yogurt, but not every day. My doc has never suggested it and I wondered if that was because it would lessen the effectiveness of the antibiotic.
THANKS, JAN! You're the best.

If you are on long term antibiotics, I just am not sure about the concurrent use of probiotics. I certainly would not go through the expense of VSL if it may be counteracted by antibiotics. Perhaps something like Culturelle or FloraQ would make more sense (at least more cost effective). You could take it between your doses of antibiotic. Who knows? Perhaps you could stop the antibiotics in time. Yogurt is a great food, but even if you are careful to eat only those with live cultures, the amount of beneficial bacteria is nowhere near the quantity in probiotic supplements.

Generally the decision to increase the dosing of Humira is based on your response. The only way to know if it is uncomplicated pouchitis is to scope, but I agree, it is not likely to reveal anything new. While pouchitis is not caused by any particular foods, if you do have active inflammation, some foods can exacerbate the symptoms (regardless of whether is is due to Crohn's or simple pouchitis). Offending foods vary from person to person. Sugar and some other carbs have been known to affect the output.

And do not underestimate the notion of sacroiliitis. It can be very insidious. I was looking through my medical records for something else and came across a bone scan done in 1995 to rule out avascular necrosis of the hips following a taper of high dose, long term prednisone with hip pain. My hips were clear, but the scan picked up arthropathy in both sacroiliiac joints, left knee, and left ankle. It was not until 10 years after that, that I was referred to rheumatology for chronic sacroilliac pain of only 6-8 months. My left knee and Achilles tendon are also particularly affected. I had low back pain that I associated with cuffitis for many, many years, because it was not consistent or particularly bothersome.

As it turns out, it was all related and the early signs were there more than 12 years ago. It was just that I nor any of my doctors connected the dots. Enteropathic arthritis with spinal involvement is more common than you may think. It occurs in 1 of 6 IBD patients. I am not saying you have it, but to just keep it under consideration, particularly if your symptoms become persistent.
http://www.spondylitis.org/about/ibd_sym.aspx

Jan

This message has been edited. Last edited by: Jan Dollar,

I take Culturelle while I also take cipro but I only take cipro once a day, not twice. Perhaps you could slip a Culturelle cap in with lunch? See, I guess I feel the opposite for people like us. Skipping the probiotics while on a short dose (typical 10-14 days) of antibiotics seems like it would be mostly innocuous. Long term though, I think there needs to be a balance because after all the probiotics are not offensive, they are good. Whether there is that therapeutic effect remains to be seen, but it just seems like it's the wise choice to make.
And yes, I do think that foods can exacerbate your symptoms of pouchitis. I think there are those of us who are sensitive to certain foods, like the sugars and starches. Again, it's all about balance. If you're eating too much of the carbo's and not enough other stuff, it could have an effect. Sugar will feed off of bacteria and molds, and if you're just continuing the cycle by over eating, it will eventually be very "happy" in the environment. I know we've gone around the issue multiple times, but it just seems like people with Crohn's and chronic pouch issues need to be very vigilant with their diets. We have GI diseases/issues, and throwing poor choices down your throat, day after day, just doesn't make sense to me.
But, good luck with your diagnosis and treatment. There seems to always be a fine line to walk! I think Jan gives you very good advice, as always.

Thanks, ladies! You're the best
I felt better tonight. The back pain is nothing like it was, I was able to use the restroom to satisfaction and pass gass which made me feel nearly back to normal. I got a note from the nurse telling me that she spoke w/ my GI and he thinks it is pouchitis based on my description and that the Xifaxan needs to be replaced with Flagyl (which I had really awful/bizzare side effects with last time I took it) for a few weeks, then start the Xifaxan again. I agree, Shelby, about the food and routine. I am usually very conscious of what I eat and my lifestyle in general. I do all organic, usually fruits, veggies, protein, no carbonated drinks, no alcohol, and I go to yoga on a regular basis which helps a great deal. However, the past two weeks have been crazy at my job, finals in school, social events, I have been drinking lots of caffine (which I usually do not do), not eating well, not going to yoga much, not getting enough rest. So partially I think it is just my body's reaction to that. However, I still think that something else must be wrong if my body reacts this drastically to being off a normal routine. I am going to try my best to de-stress, get sufficient rest, stop with the caffine and sugar, and get back to my normal healthy lifestyle. I just wonder if I still need to take the Flagyl if I feel okay after this? It's just so hard to gage this stuff, b/c I feel fine right now, but that's opposed to last night when I couldn't sleep well b/c I had to keep getting up to go to the bathroom and waking up b/c of the back pain.
Jan, I have always, since childhood and pre-IBD diagnosis, had issues w/ arthritis. I had a bone density scan done a couple of years ago and I had mild osteopenia from Prednisone, but it was apparently in the reversable stage. They didn't find anything else on the scan (if they did, they didn't mention it). But I probably should mention this to my GI anyway b/c of my recurring back symptoms. When I get this back pain, it's so strange, it's almost how ppl. describe a sciatic nerve pain, b/c it kind of radiates down my hip and back of my thigh, but it's not a constant feeling, which is what makes it so perplexing! When it radiates to my abdomen (across from where it's hurting in my back) it's really obnoxious and makes me feel like something is definitely wrong with the pouch, but when it keeps going away, it's so easy to write off. I just want to know if this is a reaction to lifestyle changes, if it is something wrong w/ the pouch, or if it is arthritis. I just feel like the Humira should be controlling all this. Maybe I have plateaued though...Do you agree with the doctor's advice to take the antibiotics?
Thank you thank you thank you!

Well if you changed your normal routine and are under more stressful conditions, I would say that maybe it is in play here. Any chance you could easily reform back to your old ways for a few days to see how you do?
It is possible that you definitely need the antibiotic but I remember reading about your sort of bizarre reaction to flagyl so I'd have a more conservative approach to it's use. What about cipro?
If I fall off my wagon for a couple of days, I notice it. It stinks but is just the way it is. I do agree that perhaps you have something else going on here. It's so hard to know --is it IBD, pouch, or totally unrelated? Seems reasonable enough to blame it on the IBD. For me anyway, usually it is stress or diet related, or my system is just under increased stress trying to fight a cold or allergies. I have a sensitive system.
When was the last time you had blood work done? I hope you feel better soon!

Yeah, I'm trying to get back on my normal routine and see how I do to try to avoid taking Flagyl. I had a CBC done last week and everything looked "great!" Who knows!

My blood work typically comes back "great" too Just had mine done as well.

I certainly would want to avoid Flagyl if you had bizarre reactions to it. I agree that perhaps Cipro would be a better choice, or even tetracycline or levaquin.

Jan

Well, whatever this is, it is not getting better. I could hardly sleep last night b/c of the back and pelvic pain. I got up several times to go to the bathroom, it was a strain each time, but the stool is thick, so I guess it must be pouchitis. I just feel very sore. I'm sure some of that is from pushing. I just really hope these antibiotics work and work fast as I'm traveling on Sunday and just don't want to be dealing with this at that point. I asked my doctor if there were any alternatives to Cipro and Flagyl that he could prescribe me. I just pray he calls it in today!! Any advice on how to ease the throbby pain in the meantime? I tried Icy Hot on my back, which did absolutely nothing, and slept on a heating pad, which felt good, but didn't help much overall.

Diarrhea is pretty much of a hallmark symptom for pouchitis, so if your stool is thick, I really wonder if you do have pouchitis. Sounds more like a Crohn's flare. Perhaps it is time for hyrdocortisone enemas, a short course of prednisone, or perhaps Entocort.

Jan

Well, I just tapered off the Entocort, as he's trying to get me off all but the Humira. He thinks the Xifaxan just lost effectiveness. I dunno! I guess I'll try the Levaquin for a few days. I have a sinus infection anyway that perhaps it will clear up...I do my next Humira injection Friday.
Here is the email I sent when they responded suspecting pouchitis:
Well, the back pain continued last night and continues this morning. Last night it corresponded to my abdomen as well. It seems to go away when I can have a bowel movement where the pouch feels "empty" or sometimes when I pass gas. Usually this would make me think the stricture is coming back, but I am passing thick stool with no problems and when I insert the Canasa suppositories I do not notice a problem. The one thing I notice other than the dull, achey pain in my low left back, is that I am having to make a few more trips to the bathroom than usual, especially at night and in the morning, because I don't feel I am eliminating properly the first time. This started about a week ago.

Well, if you just tapered off Entocort, THAT may be your culprit. Humira may not be doing it all at this point. By the way, the sacroiliac pain I get from my arthritis is in the very low back/ upper buttock area. Sometimes both sides, sometimes alternating sides. It is mostly a dull ache with sometimes shooting pains down into my leg.

Jan

Yeah, I honestly don't know. I felt a bit better tonight after taking the Levaquin this afternoon. I guess I'll just see how that goes. How would they test me for AS, Jan? A dexa scan or something more?