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Posted 5/9/2008 2:19 PM (GMT 0)
Hi,

I'm still trying to figure this DD out! Any insight is greatly appreciated! (Sorry for the length of this message, but I wanted to provide a complete picture. I'm basically interested in whether any of you have experienced something similar.

Here are my symptoms & history:

Pred stopped flare, ended taper 2/16.

9 weeks symptom free on 2 lialda/day, had a couple of days of bleeding,

then ate red meat, had normal flare (for me), went on pred 20 mg's, canasa at night, upped to 4 lialda/day.

stopped pred after 1 week (4/30), cold turkey. (I can't stand the side effects)

flare had ended.

5/1- no blood, 5/2 no blood, 5/3 blood, 5/4 blood, 5/5 no blood, 5/6 blood and worst flare ever (I ate 1/4 lb of pepperoni and some doritos the night before- very stupid!), 5/7 no blood, 5/8 & 9 blood.

So, my questions are:

~Is it normal to have symptom-free days between days of bleeding & flaring? I've never experienced this before.

~My stomach has been cramped for several days. It feels empty, but eating doesn't help and now my right side hurts pretty noticably, which I've not experienced before. It's not like the cramps that I normally get. I spoke to the nurse at my GI's & told her. The doc will probably call back later today, but this concerns me. Is this something I should be concerned about or just another symptom of this DD?

~(In addition for the past month, my breasts have been hurting me., I had a mamo and ultrasound. It was negative. Can this be another symptom of UC? Have any of you experienced weird pains like this?

 

My appt. w/the naturopath is next Tuesday. I'll let ya know what it was like!

You guys are great. I always appreciate your comments. Thanks!

Posted 5/9/2008 2:27 PM (GMT 0)
Called my pmd for an appt about this, and I'm on my way to the ER. That nurse suggested a blockage and recommended that I get it checked out pronto. We'll see...
Posted 5/9/2008 2:38 PM (GMT 0)
I wouldn't say symptom free during a flare, but there are days when blood is barely noticeable and it always gets me excited. lol. I think it is either b/c of your diet and/or rested colon if you can't eat much.
As for cramping, i can't help b/c i never cramp. I attribute it to all the water I drink. I may be wrong, but I have severe colitis and never cramp. And I know that pizza is horrible for me during my flares, it just goes right through me causing all kinds of problems, but i'm under control now and have eaten pizza buffet twice within a week and did OK.
Posted 5/9/2008 4:20 PM (GMT 0)
This is my perspective... When you are in remission, you should not have symptoms. If you are having days where you have blood mixed with days where you do not, you are still flaring all those days and are not in remission during any of them.

During a flare, you may have days that are better than others (i.e. no blood, not as bad cramping, fewer BMs, etc.) and days that are worse. You are medicating your condition and are on your way to healing. Blood is not the only indicator that you are flaring. Your colon can still be inflamed... just maybe not to the point of ulceration which causes bleeding.
Posted 5/9/2008 4:51 PM (GMT 0)
I'm back and had a really good experience in the ER. The doc checked me out for a blockage. None. He listened to me and said that these are just additional symptoms of a flare, probably in my ileum. I know I have ulceration in my terminal ileum, so that makes sense. My GI called back, I'm going on Rowasa, canasa and switching back to Colazal from lialda, since it helped in the past (before I was switched due to side effects). She didn't want me to go on Asacol for some reason and lectured me about pred saving lives, but agreed that we'll try other things first. The ER doc also gave me a referral to another GI who actually has UC and has a lot of experience with immune system stuff. I'm going to give a call!
Posted 5/9/2008 5:09 PM (GMT 0)
I have pretty severe right sided pain also. I just had a ct scan and complete blood work and both were normal. Do you have UC or crohns? I didn't have any imflamation in my terminal ileum though for my colonospy. I guess maybe it has spread to there though.
Posted 5/9/2008 5:26 PM (GMT 0)
They dx'd me w/UC, because the ulceration is confined to the large intestine. However, I have skip lesions, which is indicative of Chron's. I may have mild, beginning Chron's? They're not really sure which it is, but at this point are treating me as though I have UC. Is the treatment different? Maybe I should look into that.

The ER doc said that the right sided pain was a "normal" symptom of a flare and that they could do bloodwork and a ct scan, but it would only show that I was in a flare, which we already know. Past bloodwork for me was inconlusive as to both UC & Chron's. He said that the CT would show where the inflamation is located, which I think I know, unless it moved up to the ileum in the small intestine, which would suggest Chron's.

Anyway, Jessica, were you in a flare at the time of the colonoscopy or CT? I had a colonoscopy a few years back that was completely clean, but when I went back, the doc caught me in a flare.
Posted 5/9/2008 5:48 PM (GMT 0)
omg - you sound exactly like me! quincy and a couple of others have told me they think I have crohns or something else because I have no inflammation in my rectum and my inflammation skips areas but my doctor swears its UC. My biopsy's came back UC but the doctor who checked them said to make sure to rule out infectious colitis which my doctor says he did.

I always have it in the back of my mind that something else might be going on. My doctor told me several times that the right sided pain was "referral pain" but at my last appointment he said I shouldn't have pain there. I was concerned it was my kidneys or liver because of the medication I've been on.

I didn't have the markers for crohns or colitis either. The doctor said only 90% of crohns paitents have the marker at 80% of UC patients. And he said that 5% of UC patients don't have inflammation of the rectum. It just seems odd that I don't have all three.

I don't think the treatment is that different. From what I have read on the crohns threads I guess some people don't think that 5-asa's work for crohns.

Yes I was flaring for both the scope and the ct scan.

I wonder if I have some infection or parisite. I haven't really been in remission since I was told I have UC back in november. I was thinking my high stress level was why so my doctor put me on Citalopram to see if it helps.
Entorcout has worked for limited amounts of time , pred worked wonderfully but I had trouble with the side effects. I am going to give the entorcout another week and then try to switch to colazal as I guess some people have trouble with asacol. I think if it were a parisite then I wouldn't respond to steriods?
Posted 5/9/2008 5:59 PM (GMT 0)
OK. This is why I really love Healing Well forum. It's supportive and informative.

I just looked at:
http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/

This is the National Institute on Health, so you know it's legit.

Anyway, it says, "What are the symptoms?
The most common symptoms of Crohn’s disease are abdominal pain, often in the lower right area, and diarrhea. Rectal bleeding, weight loss, arthritis, skin problems, and fever may also occur. Bleeding may be serious and persistent, leading to anemia. Children with Crohn’s disease may suffer delayed development and stunted growth. The range and severity of symptoms varies."

I guess I should learn how to spell Crohn's if that's what I have! LOL

What I think is the good news is that Crohn's can be treated with antibiotics (like Cipro) if the 5ASA's don't work.
From the same site above:
"Antibiotics are used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or prior surgery. For this common problem, the doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, or metronidazole."

The only thing is it says in the small intestine, which mine (and yours?) is in the large intestine. This is complicated stuff!
Posted 5/9/2008 6:35 PM (GMT 0)
and we don't have "stricture, fistulas, or prior surgery". Mine is all in my large intestine also. I guess I need to go to get a second opinion. For some reason I haven't seen any blood lately either. Maybe because I'm not as bad this time around.
Posted 5/9/2008 9:04 PM (GMT 0)
I have to chime in here without trying to go too long into my whole health history somehow. LOL. OK. I have had the diagnosis of UC for 12 years. I had ulcerations in my colon only back then. In 2004, I developed a one inch deep rectal ulcer, possibly a fistula. So I have been bugging my GI about how I am concerned that it sounds like I may have Crohn's. He said it's possibly I may have Crohn's only in my rectum and there is no way to differentiate between that and UC according to him. I had an upper GI Small Bowel Follow through test recently to test for Crohn's and it came out fine/no Crohn's. But I still do not know which one I have.

The meds are the same, but there are more meds approved for Crohn's than UC. I had to go through torture to get Humira approved by my insurance because it's not approved for UC. If I have Crohn's for sure, then I can get a resection and get my ulcer removed. With UC I can't get a resection, the only surgery I can get is my entire colon and rectum removed. So, although the 2 are very alike, it would be best to try to figure out which one you have in case of surgery. I thought the Upper GI, SBFT was not the most accurate test for Crohn's, IMO. I think that an Endoscopy would have been more detailed/accurate. You could discuss your concerns about having Crohn's with your current GI and ask him for an Endoscopy. If I had to pick between having Crohn's or UC, I would pick UC. Crohn's is worse, it can lead to ulcers/fistulas in ANY of the GI tract, from the mouth to the anus. With UC it is confined to the large intestine and rectum and the ulcers are not supposed to get deep like they can in Crohn's. I have the same type of problems as you as far as rectal bleeding, I can have a few days with no blood, then the next day it is pouring out. I do not get pains in my right side. Please keep us posted on what you find out and how you are doing.
Posted 5/9/2008 9:22 PM (GMT 0)
Hey all, I find this very interesting and informative. A friend of mine recently picked up a cook for me, its called the Crohn's and Colitis Diet Guide. It has loads of good recipes in it but what I found most informative was the first few chapters which differentiate between the two diseases. I was diagnosed with UC in 2004 and have recently been going thru my first bad flare. As I have been reading this book.. U have noticed that I seem to have more in common with the symptoms of Crohns than I do with UC. For example.. the book indicates that almost all patients with UC experience blood and mucus in their stool. I have never seen mucus and only have ever experienced blood on the tissue paper.. not in the toilet. This flare I am having now seems to imitate more of a falre of a Crohns patient than that of an UC patient... in my opinion. Also, I have had unrelenting pain in the right side of my abdomen. Sigh... I have to wait until June to see my GI specialist.. I hope to have more answers then.

Good luck you guys !!
Posted 5/9/2008 9:33 PM (GMT 0)
My pain in on my right side but it moves around to my back and sometimes up to my ribcage. It has gone away for a couple of days - right after the ct scan came back normal. I know my doctor is going to say it is all in my head which irritates me...
Posted 5/10/2008 1:36 AM (GMT 0)
omg! I just got back from a dinner party where I ate crackers. The conversation was fun, anyway.

The pain seems worse now and I'm wondering if I should call the doc or go back to the ER. I'm probably going to tough it out tonight, though.

My pain is very similar to yours, hana24 & pooie1981 (great name, btw). It goes around to my back and at this point is unrelenting. Whatever it is, I think we may have the same thing. Let's keep each other informed about what we learn. I do have mucus and blood. Does the book say that crohn's doesn't have mucus at all? I am so sorry that you can't get in to the GI before June, Pooie1981. Can you at least talk by phone before then?

Hana24, it's NOT all in your head. Don't let them intimidate you. The doctors work for you. They'd be out of a job if they lost their patients.

I'd definately rather have UC than Crohn's, but what I really want is to know what i'm dealing with and how to manage it!

Good luck everyone! This s#cks!
Posted 5/10/2008 12:21 PM (GMT 0)
The book doesn't say that there isn't blood and mucus with Crohns but it DOES say it is a symptoms more associated with UC than with Crohns. The unrelenting right side abdominal pain is also a symptom more related to Crohns than UC, according to the book. Sometimes I check out the Crohns posts here and I find I can sometimes relate better with them. I also have that lower back pain you talk about... and sometimes it extends down my right leg... it feels like what my mom used to say were growing pains back when I was younger. As for my appointment, I see my family doctor every second week so he is trying to keep me sane until my GI appointment in June. He has been trying me on different meds but he's no UC expert. I have been taking Tylenol once a day to help with the back pains. I find it takes awhile to kick in but once it does I think it puts me to sleep so its all good.

I noticed that you are hoping to switch to Asacol. I was on Asacol since 2004 and it kept me in remission up until March of this year. I doubled my dosage but the right side pain is still persistent. My family Dr told me to hold onto what pills I have left just incase we switch back to it. :) I never had any side effects from it so hopefully it'll work for me again some day. TraciZ are you working right now? I haven't been able to work since March... because of the pain and the tiredness.

Hope we feel better soon !!!
Posted 5/10/2008 1:49 PM (GMT 0)
Thanks for the info. My GI switched me back to Colazal, because it put me in remission once before for 6 weeks until I lost control of my bowels on it. She told me that she doesn't believe that the Colazal was the culprit. But, I do. We'll see if it happens again. I'm trying not to jinx myself. I'll change my signature. Anyway, I'm also gonna start the rowasa with canasa on monday when I can pick it up from the pharmacy.

Yup, I work. I do research on depression and asthma in kids. My bosses are a psychiatrist and family psychologist and are SO understanding. I've been with them for 6 years. They are very understanding about my illness. They've also helped me through grad school by letting me work part-time. I'm just finishing up my clinical internship in mental health counseling. That takes 16 hrs/wk + work 22 hrs/wk + 2 kids ages 9 & 12. I keep counting down the weeks (just 7 more) and my internship will be done! I'm looking forward to slowing down a bit, even though I'll increase my hours at work. At this point, I just push through the pain and do what I can. Luckily, those around me are understanding if I need a day off! What are you doing with yourself, since not working? How do you keep yourself from getting bored/down?
Posted 5/10/2008 4:02 PM (GMT 0)
Wow, you really do have your hands full !! I work at a restaurant so its a bit impossible for me to be on my feet for 8 hours a day rushing around. Since I have been off work I have cleaned out a few closets that really needed it. Also, a friend of mine sent me a box of goodies.. magazines, paint my numbers.. knitting projects, etc to help keep m occupied. Thank goodness for friends like her, lol. I also have a cat, a dog and fish so I have been able to spend more time with them than what I usually do. I am starting to miss work now. I miss the people there, the customers.. having a purpose everyday. I look forward to going back.. maybe start off with a few less hours per day and work back up to regular shifts. :)
Posted 5/10/2008 4:44 PM (GMT 0)
I've been learning to knit but I'm not very good at it. Somehow I keep ending up with more stitches than I started with. I'm not sure what I am doing wrong. I was having alot of stress at school to the point where I finally get to my car and feel this huge wave of relief that I didn't have to be at school. I have been going to the bathroom 8-10 times a day so to go to school I basically would get up early, eat something really small and then not eat or drink water untill 5 at night which was about when my study group got out. It was not healthy. My stress level went through the roof and I got really depressed. I was taking really hard classes and I just couldn't do it. I dropped out and called my mom freaking out thinking that they were going to disown me for wasting so much money but they are okay with it and I'm applying to get my tuition reimbursed for health reasons which makes my dad really happy.

My biggest fear is that I won't be able to figure out how to get this under control. My husband makes enough that we are okay on his salary but I have always planned on finishing my chemical engineering degree and making enough money that I can do what I want in life. Now I just feel like I am a burden. I have no desire to have children and stay at home. I hate having to rely on others for help and I know eventually they will get really tired of it. I know my husband loves me so much but this is as hard on him as it is on me! It's not fair.
Posted 5/10/2008 4:45 PM (GMT 0)
It is nice to spend more time with my cat, dog and fish also:)
Posted 5/10/2008 6:10 PM (GMT 0)
hana24, it took me 5 years to get through a 2 year master's degree. I went part-time and did what I could. There's no sense being more miserable and stressed than you have to be, especially with this DD. I'm lucky that I can have privacy and breaks when I need them at my job. I get nervous sometimes in counseling, because that's 1 hr that I have to sit and attend to others. I just can't run to the bathroom, so I know what you mean about being careful about eating and planning the day around bathroom availability.

Pooie, I don't know what I'd do if I had to be on my feet all day. I have to stop, too. That's really hard work. You're fortunate that you can enjoy this time a little bit and pursue some interests. You'll know when you're ready to go back, even for a little bit.

It's so great to have people around you who are loving and supportive. Everyone needs other people, it's just when you're not used to needing them, it makes it harder for you to accept the help. The other people like and want to, though, and probably would be hurt if you refused the help. I don't know what I'd do without my fiance.
Posted 5/11/2008 12:05 AM (GMT 0)
Traci, the Canasa made me go to the bathroom more often/looser too.  The tough thing is if you start everything at once, then you won't know which med is causing what side effect... Just a warning. 
Posted 5/12/2008 1:03 AM (GMT 0)
I know what you mean Jessica about your husband... I am getting married this October and I feel really terrible that I am home and he is working his butt off!! :O( It really doesn't seem to bother him at all tho and for that I am incredibly thankful!! He is just concerned about my health and goes out of his way all the time to do things to make me smile. But on the inside I just feel like ... pardon the pun... crap !! I told him lastnight that as soon as I have one good week without pains I am going back to work.. he said he's not letting me go back until the Doctor said it was okay. This made me smile.. because I know that he truly is okay with me being home.. but I STILL feel guilty about it. Sigh... and then even when I go back... I am not very good at asking for help. I am so use to being able to handle things on my own.. I guess that is something I am going to have to change... good advice Tressa !! Have you got a wedding date planned yet??
Posted 5/12/2008 2:49 PM (GMT 0)
Yup- 8/16/08. We're going to get married in Yosemite, CA! (We live in Buffalo, NY!) It's very exciting and our families will be there. My fiance is also very supportive, but I hate being sick all the time and not able to go out and do things, like go out to eat. (Why waste the $, if I'm just going to get sick or order soup?) I feel like I'm always complaining or talking about being sick. It consumes my thoughts. For instance, "If I eat this, will it make me sick?" "I need to remember my meds." etc...

I'm also embarrassed by the gas. (I've been known to fart on him.) It really cramps our intimate life.

I've had to learn to let go and accept the love and the help, because I need it.
Posted 5/13/2008 1:55 PM (GMT 0)
I feel EXACTLY the same way. I got to a point where I told him that if I don't have pains I will tell him. That way.. he won't be asking me if I have pain and I won't be saying.. "Ouch arrgh.. got a pain" all the time... lol. It hasn't really worked out that way in the long run.. he is still asking me all the time how I feel and I am always talking about things I read on here.. etc. Oh well. Something to talk about I guess. So funny that you mentioned farting.. lol... until I got this flare we hadn't really gotten to the comfortable part of farting when the other could hear since we don't yet live together.. just spend weekends together. One day he was napping on the couch beside me and he let one go.. I couldn't help but start laughing... he wasn't as asleep as I thought he was cuz he started laughing too and I said.. it's more healthy when you let them out than keep them in... and with that I let one out that I had been holding in. LOL. It certainly cleared the air... well... not really but you know what I mean. Since then I am okay to let little squeakers out. ;o)

Unfortunitly I woke up over the weekend with a terrible head cold. I have been taking Tylenol Cold and Flu for the stuffy nose and sore throat.. lastnight I had a terrible headache to top it all off. I have never had so many headaches since I started those Sulfa pills. I have an appointment with my family doctor tomorrow... I think I may see if he can switch me to something else before my head explodes!!!
Posted 5/14/2008 9:02 PM (GMT 0)
Tressa.. was wondering how your appt with the naturopath went yesterday ??

Also, I went to see my family Dr today and he told me to stop taking the Sulfasalazine. I am going to keep what I have left tho and he said if any of my arthritic symptoms come back to take just one pill in the evening. I am not sure how comfortable I am with this choice, however. This leaves me on NO meds !! He is hoping I will be able to tough it out until June 7th when I can get in to see the GI specialist. I guess he is finally done experimenting with me. On the happy side.. since I have gotten this head cold <which I am taking Tylenol cold and sinus for> my unrelenting pain in my right side has diminished. I hope this flare is over with...

:o|
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