I do not like 'not knowing' whether or not I have a flare with my Crohn's Disease. I'm debating how long I should go before calling my doctor since I started taking my medicine regularly again only last week.
I have been overwhelmingly fatigued for about 2 weeks now. This kind of fatigue is an indication that something is going on in my body where I need to rest so it can heal, from what I don't always know. This is usually the first sign. Then a few days later I noticed mucus covering part of my stools when I go to the bathroom, and an increase in my bowel movements during the day. Mucus usually indicates a flare as well. That was when I started taking my Crohn's Disease medication again. I had held off because I wanted to give the Gluten Free diet experiment a chance without having the medicine interfere with my usual symptoms. It's not much, but it's the beginning.
Then, about a week ago I noticed small white specks covering my stools - an indication that I am not completely digesting something, probably rice. I never had THIS specific problem before, although with the Gluten Free diet I have been consuming more rice flour and rice cereals than normal. Why it would take 3 weeks to show up after being GF for over a month doesn't make sense. After that, it wasn't just white specks, but little food particles, so I KNOW I'm having trouble digesting the food I am eating.
The pain usually starts around then. Which it did. I have had stomach pain for a few days now - getting much worse after I made the mistake of trying to eat a handful of McDonalds french fries which I found out contained gluten - a wheat derivative in their flavoring.
So, 3 days ago I decided to start regularly taking my temperature. During a flare I normally have low-grade fevers indicating an infection somewhere in my body, in this case my immune system fighting off something it shouldn't be, if I am right. My thermometer is pretty accurate. I normally take my temperature right before or after visiting the doctor to see if it matches up with theirs - and it always does. My 'normal' temperature is between 95.7 and 97.3 degrees. Rarely am I ever above 97.3. I know it sounds low - but that is how I have always been. The past 3 days I have been steady around 99 degrees. That, for me, is a low grade fever. I have had the alternating chills and sweats - like I do when I have a flare, worse at night. I remember when I was in grade school they would not send students home with a temperature less than 100 degrees - although there were times I had 99.5 degrees, and for me that meant I was pretty sick.
There's no blood. This is why I get confused. My initial flare which led to my first diagnosis, I passed a lot of blood and diarrhea. I was given steroids and put on Sulfasalazine while admitted for a week in the hospital. I had little flukey flares in between then and my next big flare 1 1/2 years ago which also included passing blood, yet no diarrhea, for 4 months before being put on steroids again. The blood is the big indicator, but Crohn's disease does not always have blood. Actually, it rarely does. It depends what part of the intestines are affected. So, this is why I never really know if that's what it is. I don't know what the doctors can do - I do not want to be put on steroids again - and I just started taking my medicine so I want to give it time to work. I know it can't clear up the flare, it can't stop it from occuring or 'fix' it. It can only cut down on the inflammation to reduce the damage done. There's no magic pill, other than steroids which I do not want because they cause more problems, I just want to make sure I'm not doing damage to my body without realizing it.
So, I think I might need to go on a complete liquid diet again to give my intestines some time to rest, lowering the inflammation - hopefully, and wait it out another week or two.
It's right on schedule, now that I think about it. 2 months after my last colonoscopy. It always seems to be 2 months after a colonoscopy. Huh. Maybe I have this internal alarm clock saying "make sure you (intestines) look fine like you're in remission, and then we'll spring it on her in 2 months!"
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Comments: 16
I'm so sorry, Michelle. I hate that you go through this.
I am so sorry you are going through this. It sounds awful.
I get mucus too but I figure I get a cold down there. I have always gotten this since I was a child. I do have irritable bowel.
If they are watching your Crohn's through a colonoscopy, I'm assuming the disease is in the lower part of your digestive track. But even if you were in remission at the time, weren't they able to see granular areas? or areas of thickening? And no, Crohn's does not always have blood, but then again, you can't always see the blood there.
I get the same exact symptoms that you get, including the low-grade fever and the pain, but I have Crohn's Colitis, which I've had for over 30 years. I haven't had a flare up for probably five or six years, so I've been lucky. I hate the steriods and I can't take Sulfasalazine because I'm allergic to sulfa, so I take Colazal.
I'd agree with you on giving it a little time. I've had minor flare-ups that cleared up on their own several times. But if it does clear up, you should let your Gastroenterologist know about your flare-ups so keep it on a calendar.
Is there a way you can add protein to your liquid diet? You are going to need that protein to keep up your energy while you go through this flare.
I don't know your age or how often you've had steroids. Make sure a bone density test is in your future though. Plus you don't want to have to resort to Remicade, if you need the steroids don't turn them away. Usually it is in fairly short doses.
I hope it is merely a short term flare up. I'll keep you in my prayers, but don't forget to take very good care of yourself!
I have the Colonoscopy and the endoscopy down my throat. I've also had capsule endoscopies. The two major flares where I have needed steroids affected different areas of my intestines - one showed blood in the small intestines and near the terminal ileum, the other had it starting somewhere in the small intestine and continuing down throughout my whole large intestine - that was the worst one I had.
I don't know about the granular areas. I'm 25 years old and I had my initial flare only 4 years ago. I'm not sure how much 'evidence' is there, other than erosion, which they have mentioned. Maybe I should ask those questions? They take the biopsies, and they always come back showing some sort of mucosa - with my last endoscopy (small intestine) biopsies showing a gluten intolerance.
I don't take sulfasalazine anymore, either. I used to get nausea for the first week or two, but a few months ago the side effects were too severe for me to stand - so I'm taking Mesalamine (pentesa) instead which I do not get any side effects from, and my great uncle who also has Crohn's takes.
They diagnosed me with Crohn's Colitis last year after my 2nd flare that needed steroids. 4 months of heavy bleeding and hospitalized for Pancreatitis during that time. I was not a happy camper.
I take Ensure Plus on the 'liquid' diet - which has a nice amount of protein. I try to take at least 6 - 8 a day (350 calories each) when I'm only taking that and no solid foods. 3 - 5 a day supplementing my normal diet otherwise. I have a hard time maintaining my weight, let alone gaining it.
I have only had the 2 rounds of steroids. The first time in the hospital I was in the Navy and did not know they ever gave me steroids. I found out a few years later. I remember them talking to me about it and telling them I did not want it, but I was in the hospital and the military owns you - so I guess I didn't have much of a choice.
Last year I had a bone density test. My Vitamin D was down to 8 - when it should be over 30. It was awful.
I would rather not ever go on steroids again, God willing. I do not want to resort to remicade, either, though. That's a last resort. The last dose of steroids, ending March '08 left me with really bad withdraw symptoms. I had no idea that is what they were - I was never told by my Gastroenterologist what to look out for. I kept going back to my regular doctor in so much pain, and finally to a reumotologist because of the bone and joint pain. It was unbelievable. Nothing helped it. That lasted about 6 weeks after my last dose before the pain stopped, and it had started in my legs (ankle and foot were the worst) when I first started weaning off.
Thank you for commenting. :) Your support means a lot. Here's to another five or six years - or forever - of you not having another flare!
I know about those withdrawal symptoms. lol My hands shook so bad I couldn't write checks and I kept having muscle spasms, even in my fingers and the palms of my hands. Ow!
I took the Mesalamine for quite a while but it stopped helping me. That's when they put me on 6mp, an immunosuppressant. That worked wonderfully until we moved to a different state and I couldn't get the prescription refilled for a while. When I finally got a prescription and started taking it, it caused pancreatitis. I was in the hospital for over a week. Ain't this fun? lol
I hope you let us know how this goes in a couple of weeks. I would be interested in hearing what you wind up doing.
I wont even begin to say I understand what you are going through. I cant even imagine how it must be, but I admire your strength! Honestly though It sounds like its time to call your doctor at least and see if he has any suggestions. My prayers are certainly with you!
Please call your doctor and let him decide what you should do,May God bless you and keep you well.
I agree with Donna on this one, Michelle. The second you even suspect anyything, get yourself to the doctor asap!
This is an illness I know very little about...sounds like Cathi has a lot of experience with it and is an invaluable source of knowledgeable support. I do hope this flare has reached its peak and begins to fade without any further complications and that the pain recedes very quickly.
God bless....prayers for immediate improvements in your health.
I've only ever had steroids to reduce the inflammation of respiratory infections--and I have to be pretty desperate to breathe in order to accept a doctor's recommendation that I take them. The side effects for me are emotional--severe mood swings. I took a red magic marker to the outside of my medical chart a few years back when the doctor wasn't looking and wrote "Do NOT prescribe sterioids!" on it. They changed the folder out but that admonition is now noted in my chart--probably along with a few choice words about why....
If they give you the steroids, take them...it will help....and some of the alternatives are much worse.
Both Pher and I are put on steriods to reduce the inflammation from our allergies/allergic rxns and ezcema....both go hand in hand it seems. I may hate the steroids, but I hate the itching, scratching, and how I feel more.
Eating Gluten free means you cannot eat anything from McDonalds nor any other fast food greasy aired place. The vats that fry the fries are full of grease that fry, also all the breaded things on the menu, as well, much of that gluten is free floating around the entire kitchen, and you can count on anything, even the lettuce for the salads, are lightly coated with gluten contaminated grease.
If you've made the mistake of eating McDonalds fries, which is an obvious gluten contaminate, you've probably been ingeting other things that are not so obviously gluten contaminated.
Did you call the 800# on those chocolate ensures to see if they are gluten free?
They have "Gluten Free" printed on the bottle, so I'm good with the Ensure. The McDonalds french fries were a slip up, although I'm not sure it would matter much at this point. My Crohn's Disease is most definitely flared up right now - so many of the symptoms I'm going to have to live through anyway.
I like the way many more companies are posting Gluten Free right on the label. Shopping used to be much more difficult.
How long have you been eating the Gluten Free diet? If it hasn't been very long it could take up to a year to repair damage already done. Has the Doctor reccommended anything in the interum? Extra vitamins? What type of medications are you prescribed for the Chrohn's? I never had to take any meds., so I'm totally unfamiliar with it.
I've only been on the diet for about a month and a half. I felt great for the first few weeks, it was unbelievable - until I started having other problems. I'm taking Mesalamine, it's used to control the inflammation in the intestines for the Crohn's Disease, and helps with some of the joint pain, but it won't 'cure' the flare.
I didn't notice feeling any better, when I first started the gloten free diet until after the first 30 days. The first thing that was gone was the bone pain I had felt as long as I could remember.
The 2nd that was gone was my daily belly aches, and painfully tender, puffy guts.(Ihad always had sore guts, like I had been punched in my stomach, and was sore the next day)
The next thing I niticed that disappeared were my migrane headaches, dizzy spells, nightmares, and sleep problems.
My doctor had me taking Vitamin B shots, and had said he would have me taking other Vitamin shots if he were allowed, but all the other vitamins were made illegal to prescribe this way, so he just had me taking mega doses of the other vitamins, and ammino acids for over a year, as I recovered, and to combat the results of permanent damage that had resulted.
My stools changed, too.