Discouraged

By SW Thursday, January 01, 2009

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Hi, I hope it's okay if I do a little venting here! I've really been struggling lately with my IBD and I don't know where to turn. Since Monday I've been woken up most every morning with extremely intense joint pain in my knees and sometimes ankles and wrists (it jumps around). I'm pretty sure that it's arthritis...but it's sharp pain that's hardly tolerable rather than dull or achy. I used to believe that I had a high tolerance for pain- nothing much bothered me. But lately I'm really hurting. So much that my poor husband gets woken up early in the morning because of my screaming and crying. All I really know to do it take 2 tylenol, hobble to the bathroom (of course since I'm flaring up right now), jump into the tub and run some hot water. Then I alternate between ice and heat for my joints. Sometimes I can't get any relief for 2-3 hours.

At first I thought that this was all caused by the new 6-MP medication that I was taking. The funny thing is that I took it for 5 days before the joint pain showed up. I have also consistently had a low-grade fever since that time. I stopped taking the 6-MP on Monday morning (as suggested by my Dr.)- but am still having the symptoms (it's now Thursday night). Other new symptoms I've been experiencing this week are mouth sores and heartburn/reflux.

I'm starting to wonder if I have Crohn's instead of Pancolitis.

After doing some reading/research, I made a list of my overall symptoms and tried to label each one as UC, Crohn's, or Either:

UC: lower abdominal pain (crampy, sometimes relieved by BM)

Crohn's: non-bloody diarrhea (with no mucus); mouth sores; heart-burn/reflux

Either: severe joint pain, nocturnal and daytime diarrhea, stomach distension, weight loss, dehydration, low-grade fever, fatigue/weakness

[Some background info: I've been in a flare up since September 1st, was diagnosed with Pancolitis on October 28th. I'm being treated with a 2nd round of Prednisone & am still taking Lialda.]

Bless you if you cared/took the time to read this!!! I'm just trying to figure out if I should go get a second opinion about my diagnosis or what.

Comments (21) | Add comment

Hope Trachtenberg-Fifer, Health Guide

1/ 2/09 12:24pm

SW, vent on;that's why we're here!

Though I can surely understand why you're discouraged at this point, please know that you don't need to be-- I do think it's likely that you can be significantly helped.

Pancolitis describes that your colitis is widespread in your colon; that is, most of your large bowel. This is often the case in patients who have ulcerative colitis, or Crohn's disease of the large bowel. In other words, pancolitis is really only a description of where your disease is located, not what diagnosis (CD or UC) you have.

I doubt that you actually have arthritis; joint pain (and malaise and fever) is a very typical symptom just before, and during, IBD flares--for both Crohn's and ulcerative colitis patients with certain types of sub-types of disease (yes; there are known presentation sub-types, within both CD and UC). These symptoms can present as very mild, to very severe. Some people absolutely can't get out of bed, not necessarily because of their GI symptoms when they're flaring, but because of the severity of their joint pain and/or malaise.

I seems like it's time to have a discussion with your GI doctor about moving on to trying a biological drug like Remicade (infliximab) or Humira (adalimumab) for your UC.

Good luck.

Hope

1/ 2/09 4:56pm

Thanks for the advice Hope!

Hope Trachtenberg-Fifer, Health Guide

1/ 2/09 5:38pm

You're sure welcome, SW.

Please keep us posted about how you're doing.

Happy New Year!

Hope

Warren Dew

1/ 4/09 5:48am

Have you tried dietary solutions? You might try the paleo diet at http://cavemanforum.com.

Maddy

1/ 5/09 8:01pm

Ask your Dr. to test you for Celiac Disease. Many people are misdiagnosed for IBD and Crohn's when in fact they have Celiac. Celiac Disease also has the tendancy to cause Fibromyalgia which is where your joint pain may be coming from. Also Chronic Fatigue Syndrom tends to join in right along with the others. What can it hurt?

Ask your Dr. to do the IGA test and the anti- endomeliosis blood test. Not sure if I spelled the second one right. If it comes out positive, you will want an endoscopy done to find out how much damage has been done to the intestines. The proper diet of someone with Celiac makes a huge difference in all of the symptoms.

Judy Barbee

1/ 8/09 7:46am

I've been told i have ibs, when I cut out wheat all symptoms go away, including the ibs, heartburn, swelling of hands ..... most doctors don't know about this disease.

couldn't hurt to be tested. I did have the stool tested at enterolab. I tested positive. Hard to find a doc to treat where I'm at, but the treatment is simply a diet which is very hard to follow. Just a thought.

There are lots of sites..... celiac disease and gluten interolance...

Hope this helps..

Judy B

MERF

1/ 8/09 10:29am

I know well the extremely intense joint pain that jumps around. I do have arthritis but the pain is different AND the arthritis doesn't move. The pain I have associated with Crohn's is much more acute and actually seems to be in the bone itself as much as the joint. Further, it hurts regardless of what you are doing; you cannot lie still, you cannot find a "neutral"position, etc. You can only take a pain reliever that will knock you out. Then when you wake up, the pain has moved to some place else. Sigh ...

Insofar as your gut symptoms, I know I harp far too much on the use of probiotics but I can't help myself. I am confident they have contributed significantly to my total remission.

I am fortunate in that I've not experienced these pains for over six months. I attribute that to the steroids I was on from December through June, probiotics and Bud Light (very big grin). My doctor says if he didn't know better he would not believe I had ever had Crohn's disease. Unfortunately I will always be subject to the autoimmune hepatitis caused by the Remicade. Even that, however, is not active at this time. All of my LFTs continue to be well within normal limits.

Take care and hang in there!

Anonymous

1/ 8/09 12:50pm

Hi, Sorry you are having so much difficulty with your health. I suffered with chronic pain for about 40 years, and have only been pain free for about 3 years. Here is my sugestion:

First, go on a brief fast, of one to three days. (Extended fasts are even better.) Read up on the correct way to fast, and do what you think you can do. Keep a diary from the beginning of the fast that continues for at least a week past the fast. Someone with digestive disorders like you will have delayed reactions to what is ingested, 3-5 days, sometimes up to 6 weeks. Note your mood in your diary. If you see a marked improvement in your health, and I believe you will, shift your diet to something like -- plain, rice cakes, no flavorings at all. Or, rice itself. Stay on rice for several (6) weeks, add one food at a time, one food a week. (I'm not telling you to do something I haven't already done, I was on nothing but rice and coffee for 2 years.) Take anti inflamatories, Vitamin C and fishoil -- huge quantities. Have your doctor complete a FULL thyroid panel every six months. Find a good herbalist and work with that person.

Anonymous

2/ 8/09 1:08am

Hello,

You probably do not have Arthritis. The reliable way to know if you have uc/cd is to have a colonoscopy of your small and large intestine to see if you have damage of the little hair like structures that absorb nutrients from food moving through your intestines and if there is any ulcers. In the mean time- try these -they may help your symptoms.

Take Motrin when your joints flare especially the knees. Eat yogurt-any-kind. Do not drink any pop,coffee or alcohol. Buy a juice machine and juice 2 times a day for a month. Juice fruits and vegetables. this will replace lost nutrients in your system and give your intestines a chance to heal. As always check with a doctor before making any rash changes or mixing medications. I have a brother who has chron's disease and i have ibs. We have found the above items I have mentioned very helpful.

Anonymous

2/13/09 1:30pm

please always get a second opinion even if the results are the same doctors are just people who dagnose based on what the hear and see. What if it is something else???

LETTIE COLVIN

3/ 4/09 12:10pm

I KNOW EVERYONE IS DISCUSSING IBS WHICH I TOO HAVE EXPERIENCED, BUT I AM TRYING TO GET THE WORD OUT AND IF I CAN SAVE JUST ONE LIFE IT WILL BE WORTH IT!!! ON DEC 22ND 2008 MY SISTER 54YRS OLD WENT TO THE EMERGENCY ROOM WITH CHEST PAIN AND FLU LIKE SYMPTOMS, SHE WAS TOLD SHE HAD BRONCHITIS, THE NEXT MORNING SHE AWOKE PASSED OUT AND WHEN THE AMBULANCE GOT THERE SHE HAD NO PULSE, SHE WAS PUT IN ICU ON DEC 23RD AND AT 3:37 PM SAT DEC 27TH MY SISTER

WAS TAKEN OFF THE RESPIRATOR AND DIED OF SEPTIC SHOCK. I HAD NEVER HEARD OF THIS BUT IT SEEMS TO BE HAPPENING MORE LATELY ALONG WITH MRSA. HER LITTLE HANDS AND FEET TURNED BLUE AND THEN BLACK, SHE HAD TO BE BURIED IN A SPECIAL SUIT BECAUSE OF FLUID? AND INFECTION. I DONT MEAN TO BE MORBID BUT IF U GET SICK DO NOT LEAVE THE DR OR HOSPITAL UNTIL YOU KNOW THERE IS NO CHANCE OF THIS HAPPENING, IT IS CAUSED FROM AN INFECTION OUT OF CONTROL THAT GETS IN YOUR BLOOD STREAM, PLEASE PASS THIS ALONG.

A GRIEVING SISTER IN OKLAHOMA

Anonymous

4/30/09 10:33am

Hi!

I saw your comments and want to let you know that I don't mind at all to hear about your illness(es) as I have several health issues that I struggle with and have been undergoing numerous testing for a year now and they still don't know for sure what it is: liver lesion?? thrombosed vein with a shunt(backed up clumped blood clots or blood from a vein in the liver. I am frustrated to say the least. Now they want to just ignore it and stop further testing, which I object to unless they can give me a definite diagnosis, but am willing to do MRI again but they don't want to do it. I also have problems involving urinary system and am going to have tests to determine if I have a fistula which is what my doctor believes is the problem, since I have had continuous UTI's since '02 and since TAH total hysterectomy. Anyway, those are two problems and I won't go into others at this time. I have been used to chronic pain as result of auto accident(got hit by a guy on purpose standing in front of his car )in 74. Anyway, maybe I have found as you have a place to vent or share stories with someone. I will pray for you if you don't mind.

tamm0449

5/19/09 2:32pm

Dear Friend, Have you been to the Doctor and considered Fibromyalgia? You sound just like I did except that I also had spasms in the back of my legs and all over my body that would grab me and make me scream. My Doctor started me out on Diazapam (Valium) and that stopped the spasms which was wonderful but I was still in pain. I am allergic to anything with Codiene so there wasn't much she could give me for pain, I had to live with it until I saw Lyrica advertised on TV. I went to my Dr. and asked her to write a prescription for that and immediately my pain disappeared. I take it once in the morning and one at night and it is wonderful. I also have Chronic Fatigue Syndrome so I found out through the grapevine that Provilgil will give you energy to live through your day without having to nap all of the time. Provigil is for people who fall asleep all of the time and can't seem to stay awake. Just like me. The Provigil is a miracle too, I have tons of energy and thanks to the Lyrica no pain and no spasms because of the Valium (Diazapam). I am so thankful that my Doctor listens to me and works with me. I wrote about Fibromyalgia on my Web site if you would like to read about it to see if it sounds similar to you. Go to: www.spiritual-harmony.com and go to the Web Directory or click on the Banner at the top of the page and read about it. Please leave me a note on my Guest Book to let me know what you thought about it. I send you my love and prayers. May God be with you and heal you or help you like he did me.

Sincerely,

Tamara Lesley

www.spiritual-harmony.com

james

5/22/09 10:43pm

i would suggest that you do a good search on ( gout ) as it is the crystals in the joints that could be giving you that pain , you will find that it can be disolved and the Pain gone , happy searching you will be rewarded jim

5/27/09 5:04pm

Several months later I'm happy to say that I am in remission. My doctor wanted to put me on remicade in February and I wasn't so crazy about that idea. I stopped taking steroids, starting probiotics and other natural supplements, modified my diet, and stopped seeing my doctor (I know, I know- I'm not suggesting everyone do this). A month later, I felt much better. I'm not sure how to explain this other than that by God's grace I am not having a flare up.

Anonymous

11/ 3/09 6:07pm

I was feeling just like you. I went to a rheumatolgy and was diagnosed with ankylosing spondylitis, which is associated with IBD. Go to www.spondylitis.org and see if you can identify yourself. My treatment now is sulfasalazine, prednisone and a medication called Humira, I don't know how I am going to react to all this. I will continue to take Colazal for the IBD. Hope this will help!

Anonymous

11/10/09 6:04pm

Hi SW,

Have your doctor ever given you a prescription for any ibprophen such as Motrin, Advil or Alleve? Those are anti-inflammatory medicines and they do work. I sprung my ankle in 2004. Well me being so hardheaded and ready to get back into the swing of things, messed up walking too soon. Up until this year (September) my ankles used to swell so bad until I could not even get shoes on my feet. My doctor prescribed Motrin 600/800 and it took away the inflammation and the pain. Back in July, I started getting detox therapy and my feet has not been swelling, no more Motrin and some of my shoes are to big. God is good.

Try the Advil or Motrin for a while and see if that helps any.

mike

1/ 1/10 1:49pm

One medication undergoing clinical trials is a plant-derived anti-inflammatory product called flavocoxid. This medication apparently has effects on COX-1, COX-2, as well as LOX. Clinical data so far has shown that the side-effect profile is significantly lower than that for other anti-inflammatory drugs. Flavocoxid is a blend of phytochemical compounds derived from fruits and vegetables. The advantage is that this compund appears to have many fewer side-effects than currently available prescription non-steroidal anti-inflammatory drugs. Clinical trials are ongoing.
source:
Ankylosing Spondylitis
Ankylosing Spondylitis Guide

===Mike===
University of Maryland
Health and Fitness,Kidney and Urologic Diseases Information