Seeking advice from those who have been there...

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Cetatogirl
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 2/14/2010 11:58 AM (GMT -7)   
Hello everyone and Happy Valentine's Day. My name is Donna and I have been a member for a short time. I have had a very extended flare up of whatever form of IBD that I have and would like for all of you to know what a lifeline you have been. I may not have posted but I have read and taken hope from many of you. Thank you and bless you all. I have an appointment Tuesday with my third GI and would like to be able to go into this more knowledgeable than I have in the past. I would appreciate knowing what tests to ask about, what are the most important questions that I need to ask. I would like to be an informed patient for once. So hit me with your best shots, fire away and wish me luck. Any input will be appreciated more than you will ever realize. Thank you in advance. I will be on and off the site today and tomorrow if anyone has any questions.


To the MODS, if you feel this belongs somewhere else, I understand.
Crohns/IBS/IBD - also suffer from TMJ, Tinnitus, Bruxism, Hyperacusis, Migraines, Fibromyalgia and I am Ototoxic

Current meds: 16 mcg Amitiza, 3 mg Xanax, 40mg Prednisone (it varies, my GI lets me decide) 20 mg Flexeril and 1300 mg Darvocet


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/14/2010 3:05 PM (GMT -7)   
Cetato,
I know this sounds strange, but I have lots of questions.
What tests have you have done? Have you had a pill camera, small bowel follow thru, full egd and colon scopes, promethous blood test, hydrogen breath test (for bacterial overgrowth), etc?
What meds are you looking at besides pred? What have you tried in the past? What/Why has not worked...etc?
What are the symptoms you are experiencing such as: stool count and consistancy? Bleeding? Vomiting? Skin issues? Joint issues?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Cetatogirl
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 2/14/2010 4:52 PM (GMT -7)   
I certainly understand all of the questions and thank you for taking time to ask. I have had the usual battery of blood tests that you pcp takes, tests for vitamin levels, test for autoimmune disease (negative). I have had three colonoscopies in five years, and two polyps removed. I have not had a pill camera, promethous blood test or a hydrogen breath test.

The only medication I have been given for any type of IBD has been Amitiza. I could tolerate it only at low doses (8mcg twice a day). Right now I am taking probiotics, Vitamin D, Calcium, Flexeril and Xanax.
I have some other issues that may or may not influence treatment. First of all, I am ototoxic. The majority of antibiotics will cause me to become profoundly deaf for periods of time. There are also certain other classes of drugs that have the same effect. High doses of pred is the treatment when that happens. Not fun.

The symptoms I have now are bouts of either total constipation or long bouts of diarrhea. The constipation will not clear up on its own. I usually use Miralax at as low a dosage as possible to start my colon to working. This is when it gets bad. I can spend as long as 7 - 8 hours in the bathroom. I have the feeling of never being completely "finished". When the bm does start it is extremely hard and large. Labor pains are the nearest feeling I can give for comparison to the cramping. There is a lot of rectal pain, some bleeding but once the cramps start they continue until that bout is over. Once the hard stool phase has passed, diarrhea starts. Its really more of a loose stool that comes in torrents and then stop for awhile. No set time, just stop.
The amount is unbelievable to me. I then start back with the cramping and loose stools. As the day progresses, the stool becomes looser and more watery. At times, I pass quite a bit of mucus. It usually ends with passing what I call rabbit pellets.
I have been going through what I described above since the first of the year.

Skin issues are limited to my feet. They sometimes look lke the world's worst case of athlete's foot and itch like the worst case of poison ivy ever. I have a good script for that.

Bleeding is limited to my hemorrhoids, which at times give me a really bad case of roid rage.

I have vomited a few times but not enough to complain about. Nausea is more of a problem . I have passed out after severe cramping which can be scary.

I really don't have joint issues but do have FMS. I also suffer from migraines that are debilitating.

They have had me on some may different meds in the past four years that my priint out is about three inches thick and nothing seemed to work.

I am currently taking the flexeril for bruxism (teeth grinding). I have actually broken four teeth in my sleep. The Xanax is also to help relax my jaws at night. I have TMJ, Bi-Lateral Fluctuating Sensonueral Hearing Loss, Hyperacusis (sensitive to sounds), Tinnitus, osteopenia, Morten's Nueroma and Costochondritis.

I feel as though all of this overwhelms doctors when I first see them and that is why so little is done.

Thank you for asking ,thank you for reading and thanks if you reply.

Donna
Crohns/IBS/IBD - also suffer from TMJ, Tinnitus, Bruxism, Hyperacusis, Migraines, Fibromyalgia and I am Ototoxic

Current meds: 16 mcg Amitiza, 3 mg Xanax, 40mg Prednisone (it varies, my GI lets me decide) 20 mg Flexeril and 1300 mg Darvocet


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 2/14/2010 4:59 PM (GMT -7)   
You might really benifit from the pill cam. It was the only test (other then blood work) that showed anything for me. I hope you get some answers soon.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 2/14/2010 5:11 PM (GMT -7)   
my guess is that your electrolytes are low. the Amitiza is a newer approved drug = Lubiprostone. while wikipedia says it does not alter serum electrolytes ..I kinda doubt that information. More accurately stated (perhaps) is that ..it is probably a more powerful laxative (has fluorine in structure) and thus you have both ends of constipation and watery.... so that might be from the dose level and when its taken...the wider effect generates the result you describe (in theory here). Crohns by itself will be watery from mucous. so inkeeping with this idea would be to verify the dose (perhaps lower) and add some metamucil at the 'other times'. does this make sense? The electrolytes imbalance can thus have the ear ringing effect etc.. so check your potassium level right away by getting a blood test.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 2/14/2010 8:44 PM (GMT -7)   
I had very similar symptoms to yours as far as the bm's. Once I got on meds it helped them a lot. I had to also find out what in my diet was making things worse. It sounds like you need some meds to help your inflammation. Do you take anti depressants for the IBS? Amatiza treats IBS, not inflammation. Ask about the results of the colonoscopies. They must have seen something on the scope or biopsy if your have been diagnosed with crohns. Good luck to you.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies, prediabetes, high BP, fibromyalgia
low thyroid,claritin, advair, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D
zoloft
latest CT scan showed marked inflammation in descending colon/sigmoid colon. Sigmoidoscopy showed inflammation with negative biopsy.
switched from colazal to lialda 1/16/10
ALLERGIC TO SULFA, AND ANTIBIOTICS GIVE ME DIARRHEA!
Blood test positive for Crohn's via prometheus ibd serology panel


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 2/15/2010 5:28 AM (GMT -7)   
Pill cam is my vote too. Thats how they found my troubles when no other test did. Most of the test I had were a total failure,,,even though I studied....
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/15/2010 7:49 AM (GMT -7)   
I hate to be a bearer of bad tdings, but when i first had cd, which was in1970 your syptoms of const. and d. is what I experienced, and then total obstuction only to have 8ft of small bowel removed at the obstucion site. and I was good to go for 18 years no meds's just careful of what i ate, but then another 1ft removed at resection site, to prevent another obstuction, very common in crohn in the small intestine

artist guy


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/15/2010 8:15 AM (GMT -7)   
I agree with the above posters that a pillcam might be the best test to request. This testing see area's where a scope cannot reach. If you do have the test make sure they have you do the test capsule first in case you have a stricture that it might get stuck in, that wouldn't be good. Also, with your previous scopes have you had biopsies taken. Those usually help to diagnos Crohns too. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Cetatogirl
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 2/15/2010 7:32 PM (GMT -7)   
I don't take meds for depression. But I do know what my "trigger" foods are and avoid them at all costs. I am definitely asking about the pill cam though. Thanks to everyone for their input and will post results tomorrow. May all of your evenings be peaceful and harmonious.

Donna
Crohns/IBS/IBD - also suffer from TMJ, Tinnitus, Bruxism, Hyperacusis, Migraines, Fibromyalgia and I am Ototoxic

Current meds: 16 mcg Amitiza, 3 mg Xanax, 40mg Prednisone (it varies, my GI lets me decide) 20 mg Flexeril and 1300 mg Darvocet

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