Crohn's Disease Forum » Your Story » Opinions Welcome

04-27-2014, 12:59 PM   #1
The Wife
Join Date: Apr 2014
Location: Maitland, New South Wales, Australia
Opinions Welcome

Hi all, my husband has been ill in excess of 18 months now. We do have a specialist appointment coming up, but I would appreciate any feedback or opinions. He had a hernia repair op in November 2012, after which he got a staph infection. It ended up taking 5 operations and 8 months and a massive amount of intravenous antibiotics to get rid of the infection and have the hernia re-repaired. He appeared to be on the mend, when he suddenly began experiencing a myriad of unusual symptoms, which at first we didn't think were connected. After being fobbed off by a range of doctors and hospitals, we drove 2 hours to a private hospital in our State's capital, and we appear to have finally found a specialist who is taking the situation seriously.

They symptoms started with abdominal pain and chronic diarrhoea, pain when going to the toilet and very dark stools. This has been happening on and off for approximately 1 year. About 7 months ago he woke up with vertigo/Meniere's type symptoms which lasted several weeks, then just went away. About 6 months ago he woke up with arthritic pain in his joints. It moved from joint to joint each day. His hands seemed to be affected almost daily with weakness, and loss of movement. He was also experiencing extreme fatigue and periods of blurred vision. He eventually saw a Rheumatologist who put him on prednisone for approx. 2 months (during this time all his symptoms virtually disappeared, except he continued to feel fatigued). He was then weaned off the prednisone and then the stomach pains and gastric returned. He has also been experiencing tinnitus for some time. Things came to a head about a fortnight ago, when we headed off to Sydney to seek more assistance. He was given a CT scan, a colonoscopy and a endoscopy and several gastric polyps and colon polyps were removed, which the specialist is confident are benign. The polyps and other tissue has been sent off for biopsy testing. We are still waiting on result. Since returning home, he initially felt really good for a couple of days, but woke up one morning with an unusual rash on the lower part of his legs, which appeared like vaculitis (there were numerous patches of red type bruises - up close they looked like groups of broken blood capillaries under the skin). Over the next few days they have faded. Since then the arthritis has come back in his hand and elbow and he is in severe pain, and this morning when he had a bowel movement, it was black, and he passed a large amount of red blood as well . We suspect that he may have Crohn's Disease or something similar. We were wondering if anyone else has experienced anything like this. Any comments would be most appreciated. We are getting desperate.
04-27-2014, 02:36 PM   #2
Senior Member
Join Date: Mar 2011

My Support Groups:
Please remember to tell the specialist about the steroid testing and how it made a huge relief for your husband; it may give him a direction (even though there are still many options as steroids can make several conditions better).

Hope you get to the bottom of it soon and get the right treatment. All the best.
04-27-2014, 03:36 PM   #3
theOcean's Avatar
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
I haven't experienced anything like this, but I'm going to tag Afidz here in case she can give some advice.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-27-2014, 03:49 PM   #4
Super Moderator
afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
I have had a run in with a hernia identical to yours. I am 15 surgeries in, and I think I have had at least 5 different staph infections. I am happy to year that he found an end to that, gives me hope.
If your husbands BM was black, I would highly consider going to the emergency room, there is clearly blood and he may be loosing more blood than the body and heart can keep up with.
As for the rash, I can't for the life of my think of the name of the disease that tends to correlate with Crohn's, but what you are describing sounds very similar to it. Are there any open wounds? Has he seen a doctor about those yet? If there are open wounds remember to keep it as sterile as possible. Since it appears to be busted veins, an infection can very easily get into the blood stream and then you run the risk of the entire body getting an infection and septicemia which can be deadly. I am going to rack my brain and try to find the name of the rash like thing on his leg, I just wanted to post this now to get the information out there

EDIT: I believe I was referring to erythema nodosum
Check it out here
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
04-27-2014, 05:18 PM   #5
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Have they tested him for C.Diff (click that) during all of this? With that massive amount of antibiotics, that would be one thing I'd wonder about.

And did the rash on the legs look like Petechiae (click that).

Prior to the hernia did he have any weird symptoms or GI issues?
It's good to be back

Crohn's Disease Forum » Your Story » Opinions Welcome
Thread Tools

All times are GMT -5. The time now is 02:28 PM.
Copyright 2006-2017