Unrelenting Flare

[Regular Joe]

Hi all,

This flare has been active since early June. It hit real hard and heavy spot and put me on my back for about 3 days in mid-July. But it's got relatively calmer. But every darn day I'm waking up with cramps, and I think I'm growing so accustomed to this pain that I don't often realize there is pain until I stop my daily living activities for a minute.

The GI seems to want to "wait it out" and not prescribe medication to "see if it [ileum] heals." Well I got hit with some excruciating cramps this morning. I was pretty much doubled over, and I couldn't walk. A handful of joints were literally "hot" to touch and I had major swelling and pain in my knee (which is on the list for replacement) - so much so that I couldn't fit on my brace. But the stomach pain was worse, and I was dead from fatigue.

I'd say pain was a 7 on a 10-point scale. One notch higher, and I would have gone to the ER. My lower bowel, you know the place, pubic bone and right side, were as swollen as I ever seen, and very painful. Another day without pay which is happening at least 3 times a month.

I did OK with output - no runs. Just one soft but formed BM with nothing out of the ordinary. This has been an improvement as a result of Metamusal, I'm pretty sure. Which is one thing the GI suggested. But regular BM's haven't seemed to tone down the flare (pain and fatigue, and now EIM's). I'm still in pain every day, and some days like today I'm a goner to life outside, in the bed in a fetal position sleeping until 2 or 3 PM. Then the pain usually subsides and I can get around like this evening. Yesterday it was a constant low-grade ache all day. You gals and guys know how frustrating and inconsistent this disease can be. Well that's where I'm at.

I set up an appt with my PCP for today and will bring the test results and diagnosis. I'm also bringing my journal of IBD "events". I can't get in to see another GI until 10/7. But the pain and missed time are getting pretty old pretty fast, and the flare isn't getting better - it's just hangin' around getting mean every so often.

I think at this point I'm wanting to start medication. Quality of life needs to be better and hopefully can be seeing as I'm not on any meds other than Prilosec. As far as I know this is Crohn's Ileitis, so may be you all can school me as in what direction in medication should I be talking with to the PCP? I'm thinking Enticort along with maybe Sulfasalizine, or maybe just a single 5-ASA (some form) without Enticort.

I really need to do something to get back on track.

Yes, I know the GI is where I'm heading, but the first one hasn't got his mind made up, and it takes a long time to see him. I'm going to check out another GI, but there is a long time between, and I don't want to live this way for a month if I don't have to.

Your input would be most helpful to me.
Thanks,
Joseph

 

[shazamataz]

hey Joe,
I'd be surprised if you didn;t need Prednisone to start with if things are that bad?

I don;t know much about those other two as I have just asked my GI about them after weaning off pred in a few weeks time and he said they don;t use themn here (I don;t know if that is in New Zealand or just our local GI team). I think I'd rather try those than immune suppressants but I guess I have to go with what is available.

Good luck!

Shaz

 

[kenny]

It may be so obvious to you that you did not mention it, but I just have to ask Joe? What guidelines for eating are you using? Do you have a nutritionist to help manage calorie intake with foods suitable for people with restrictions/strictures?

 

[Regular Joe]

Kenny,

Prior to the flare, I was following weight watchers core plan which is a pretty decent and balanced nutrition guideline. First symptoms of the flare appeared and the CNP told me to modify the core plan because of the lack of carbs and starches. She essentially added low-residue items (white bolied potatoes, pasta w/o sauce, etc) and told me to stick to BRAT and variations of BRAT when I'm going through rough periods, and to also keep a food journal, which I currently do.

I've virtually elimnated fried, greasy, or high-fat beef and pork. In fact beef is pretty much being avoided in any form. My protein sources are pretty much baked or grilled chicken and fish, turkey, and sometimes ham. I worked in brown rice and multi-grain pasta which are tolerable almost always. I stay away from dairy like the plague including cheeses (except parmesian), I do yougurt daily which is tolerable when nothing else is, in which I mix live acidophilous from Vitamin World - it's good and consistant product. It's hard to eliminate refined sugar cuz it's everywhere, but I'm real active avoiding sugar wherever possible.

The CNP also recommended that I don't eliminate fruits and veggies, but obviously stay away from the gassy items like brocolli and cauliflower. Since I had kidney stones (no big surprise), I've been avoiding the oxelate bunch of dark greens and other stuff on that list. I also avoid nuts, popcorn, corn, watermelon, and pinapple. I also stay away from spicy and/or hot anything.

I've been proactive since the first flare a long time ago in staying balanced with low-fat and foods with a high yeild of vitamins and anti-oxident qualities. I drink lots of water, avoid carbonated beverages, and lock down on Gatorade G2 when times get rough. I honestly think my diet is what kept flaring off the map for 7 years. My guess is that CD is progressing this time, and I'm thinking that I've run the healthy food intake paradigm as far as it can go. Seven years without symptoms isn't bad I suppose.

I take supplements, but I updated my list and weeded out anything that might have a hint of bowel irritation properties. I only found a couple supplements that could be troublesome, so I eliminated those completely (which neither worsened or made better the flare anyhow). One big plus in the midst of this was introducing Metamucil into the mix (per GI suggestion). For me, I'm impressed at how quickly it tamed the watery D and brought it back to (soft but formed) regularity and consistency. If I move twice a day, both are regular. Anything after 2, gets "explosive" and will become watery after 3 or 4, but that hasn't happened but once since I started the Metamucil.

But obviously the "movement" or it's consistancy or volume isn't the problem because I get pain before and after. Sometimes it is a dull pain that lingers all day. Sometimes it fades away in the afternoon, like today. But there are times like yesterday when I get whooped and can't even stand up straight.

Lately, I've been getting neurotic about eating because I can obsess and worry which doesn't help in the cycle either. I haven't been eating much of anything over the past few days because like many here, if there's nothing "in there" there's much less to worry about coming out. Probably not a good attitude.

My girlfriend's sister visited a nutritionist, and she is definitely the stricture-prone crohnie. She's also in the stoma crowd. Her sister outlined the nutritionist's dietary guidelines to my girlfriend, and my girl laughed (very surprised because she didn't realize the way I manage my diet and was trying get her to manage her's is exactly what a nutritionist recommends for upper GI CD) and told her we already do all of those things. Then my girl started taking me more seriously, and has stopped lecturing me about what to eat and not eat.

I don't know, but for some reason, a lot of women seem to have a sub-conscious belief that men don't know how to "eat right" and they can take better care of diet. It's almost like an "inborn" thing. But because of my OCD, like I mentioned before, I become an encyclopedia when it comes to issues that are close to home.

So I guess that is a very long way of saying yes, Kenny, I'm very thorough in managing diet and nutrition. But I'm open-minded enough to always listen to suggestions and put them to the test, and keep the ones that work.

 

[kenny]

I think your diet is awesome and I am inspired by your dedication to it. Although if its true that a good diet can only help so long you have popped my bubble. I was hoping that proper diet management would give me the next 40 years symptom free.

I am on slow release Tablet type morphine at the moment to help relieve chronic pain but that is a stop gap until my resection.

I hope some of the more experienced crohnies around here can discuss this with you. I am going to have to sit back and learn.