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sweet39
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/7/2007 5:34 PM (GMT -7)   
I am a new member and have been to 2 GIs, one proctologist, urologist, rheumatolgist, and gynecologist.  I.  I have had these sypmtoms for 5 years now.  First it was the gall bladder, then GERD, and we've gone back and forth with being diagnosed with proctitis, UC or Chrons.  I also developed ulcerated internal hemmorhoids.   I eat, sometimes before I finish my meal, my stomach cramps up, and I run to the bathroom and this is how I live most of my days. Definitely do not have with constipation but on the other side of the spectrum.   It can start as early as 3 or 4am in the morning.   I have blood and mucous in my stools and sometimes beyond this.   Sometimes the blood drips or the entire toilet bowl is red from blood.  This is scarey at times, but I have had all kinds of tests, to be told I don't have cancer.  In addition, I also have IC (interstital cystitis) and chronic to severe aches all over my body.  The Rheumatologist thought I may have fibromyalgia (sp?).   I don't know what to do as I have been on asacol (8 per day) and it appears canasa did nothing for me.  I am on aciphex, zantac, urised, and have many allergies.  I am puzzled because no doctor has diagnosed me. All the marker tests for UC and Chrons have come back inconclusive.  They pretty much tell me they don't know what I have.   If you have proctitis, are you also having the same symtoms I am having.  I am a positive, optimistic person and I am destined that this will not defeat me.  I am in search of answers.  If you can respond if you gone through what I have or have suggestions, let me know. 

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/8/2007 1:56 AM (GMT -7)   
Hi..welcome to the forum. How awful for all you're going through. I can relate only to a small portion, but I did go through a phase where I was checked for IC. It was all a pretty rough go. The urologist did state that is a connection with UC (which I had before I saw him)...he didn't say how. After the bladder scope, it was confirmed I didn't have it. Actually my bladder problems ended after the scope.

Is your IC ulcerative or non-ulcerative?

Have you been tested for parasites, bacterial or viral infections?

Did your doctors ever mention ischemic colitis?

Have you been tested for Sjogren's or Lupus?

Have you had liver enzyme tests done?
Do you have all your test results?

Out of curiosity...what is your diet like? I don't believe diet is a cause for any of your problems, but I know that some foods can cause symptoms that can overtax the body if it's sensitive or averse to it.

Have you been able to specify what you're allergic to?

What has the treatment options been for you regarding hemorrhoids? Have you been put on any steroid rectal meds to try?

Have you considered any alternate perspectives...not necessarily treatments...but perspectives.

I found three interesting sites... 

http://www.ichelp.org/RelatedDiseases/SeeingTheForestThroughTheTrees.html

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12745747&dopt=AbstractPlus

http://www.mayoclinic.com/print/ischemic-colitis/DS00794/DSECTION=all&method=print

There's a med called dicyclomine (Bentyl/Bentylol)  that might help with some of the spasming/cramping/urgency of both colon and bladder issues...

Sorry for all the questions....I sure hope you're able to get some answers....your optimism is a good thing. 

quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 11/8/2007 2:07:39 AM (GMT-7)


sweet39
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/8/2007 5:12 PM (GMT -7)   

Quincy -

I have requested all my medical files from all of my doctors so that I can review all the files, medical notes and test results.  I am finding I am not savvy enough medically to know some of the answers to your questions.  I have no clue if my IC is ulcerative or nonulcerative? I have problems with my bladder since childhood though and also with the aches and pains.  Yes been tested for parasites and nothing came up. No mention of I. colitis.  What is that? I have not been tested for  Sjogren's or Lupus? Who would do this test and what does it consist of.  Not sure about liver testing or not again who would do this?  The GI?  They did several band litigations for the internal h. with no success.  No internal meds given for IH.  The only thing I was given was canasa.  Basically the GI and proctologists can't agree on my treatment.  My diet consists of no breakfast, small lunch and dinner.  I stay away from spicy foods, any veg or fruit with skins, milk, greasy foods, popcorn, salads or too much fiber as it totally messes me up.  Safe foods seem to be white bread, rice, potatoes bland. I am thinking about a dietitian but it's hard when you don't know for sure what you have and sometimes it doesn't matter what you eat even if it is safe.  Stress does not affect it and it is hard to predict when a stomach attack will occur.  My constant runs to the bathroon I know do affect my bladder because it is the same muscles used in a sense.  I appreicate your feedback and will look into the websites you provided.  I also wonder if there is value in going to a MAYO clinic to see if they can give me another opinion. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/9/2007 12:13 AM (GMT -7)   
The rheumatologist would test you for Sjogrens or Lupus...but there's so many disorders/diseases that seem to run together. Most have no cures, but are ongoing in treatment. The point is to know exactly what's going on.

I'm not surprised that the doctors aren't agreeing with some of your treatments...

I think if you can afford to go to a Mayo Clinic....go. At least they specialise in complete diagnosis and your file is in one place.

I think seeing a nutritionist/dietitian would be good. From what you're limiting yourself...I can't see you're getting full nutrition...which is necessary when you've got immune responses..etc.
Eating small nutritious meals often during the day is better than going long periods of time without. Have you checked any of the food replacement supplements, etc?

Bottom line is to find out exactly what diagnosis is at any given point in time and ask the doctors for clarity. Having your files, etc is good for future reference. I'm sure you're a challenge to all your doctors, but the body does like to work in harmony...so different docs in different directions can work against it.

Keep us posted for sure as to how you're doing..and other separate questions you may have post them in a separate thread. Someone may know something.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


sweet39
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/9/2007 4:53 PM (GMT -7)   

Quincy -

Thanks for the information. I also seem to have a pain on my right lower side or immediately under my right rib.  It's been frustrating as the doctor never calls me back  after the test or has his nurse practitioner call me.  I think they should schedule a separate time to explain the test results. This is also one of the reasons why I believe I need another opinion.  This is also why I insisted on getting the test results in writing.  Thanks again! 


Veebo
Regular Member


Date Joined Nov 2007
Total Posts : 147
   Posted 11/10/2007 8:53 AM (GMT -7)   
Hi...I probably sound like a broken record but you may want to ask your Dr. to check you Celiac disease if they have not done so. I had a long battle with many of the symptoms you noted above. When I finally got my diagnosis of celiac (which took a while to get b/c I was not "wasting" losing significant amounts of weight..but rather gaining instead) some of my issues did calm down. I am now trying to find out if I have UC or IBS because I still have frequent bowel movements with blood on and off....but the frequency is down from prior to the celiac diag. Good luck to you.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 11/10/2007 1:04 PM (GMT -7)   
Definitely a good point Veebo!

Sweet...the lower quadrant pain could be cecum involvement, crohn's disease (and not UC), gas, ovarian cyst, endo...
The upper right pain could be gas, inflammation, liver, Crohn's disease, small intestine inflammation...

Always hard to know..but if it's consistent, then it's more than just gas, for gas does tend to cause discomfort wherever it's passing and "expanding".

I can see how you're totally frustrated, for there's always some information missing when it's not coming from the one who can answer your questions.

I still think going to a Mayo clinic will be of benefit....and the main reason is because you have way too many things going on. They need to look at you as a whole for some of the meds can be used to treat all...such as immunosuppressants, etc. But if you do have something that's hiding amongst the fray, it's always easy to assume it's the most obvious rather than something new.
But in saying that.....with having so much going on, the body tends to react as a whole rather than independently in an effort to maintain some sort of harmony....my take anyway.

I think you getting your records will serve you well. You have a lot of work to do regarding research....but I don't think you have any choice because it's YOUR life/future at stake.

Please, please keep us posted.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


sweet39
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/14/2007 8:29 PM (GMT -7)   
Quincy and anyone else. 
Went through my test results.  No liver enzyme tests - why would i need one?  I have an appointment tomorrow and will see what I get for an answer for followup.   I am on my 3rd week of a flareup.  Can't sleep, wake up at 3am to go, joint pains, and having the worst nightmares.     Read and see what you think and respond when you can.  Thank you! 
 
The last 3 times I went to the GI
3/7/07  Capsule endoscopy, normal appearance no blood in study.  Post operative diagnosis - anemia.
 
4/27/07
Distal proctitis/anitis, biopsied
Internal Hem
Normal colonscopy
No evidence of ileitis
Cecum, a. colon, transver all normal.
Distal part of rectum near dentate line and anus inflamed, Anal canal inflamed, edematous, and friable and had whitish purulent exudate overlying the distalmost 1.5 cm of anus and rectum.  The inflam changes seem to overlie the internal HEM.  Biopsies obtained - diagnosis:  acute proctitis with ulceration
 
6/7
letter to GP
Evaluated for infectionious process at gyn clinic - negative
Doctor states I am not exactly sure what she has. Mya be anusitis (? what is this???), distal proctitis associated with IBD.  Distal?
GI says do hemorrhoidectomy but protologist say no because she is afraid I won't heal if I have Crohns. 
 
8/3/07
Rectal biopsy preserved crypt architecture.  Focal mild increase in lamina propria chronic inflammation.  Scattered crypts showing infiltrating neutrophils.  No granulomas are seen.  Anus biopsy shows an ulcerated surface line by reactive appearing columnar epithelium with villiform or papillary architecture.  The etiology of the patients changes are unclear, but idiopathic inflammatory bowel disease cannot be excluded.    Diagnosis:  Mucosa, rectum focal active proctitis, Anal biopsy Mucosal ulcer
 
 
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