Everything is going to be okay.

Thank you!

When I got diagnosed I heard my doctor saying "chronic" and "moderate to severe inflammation" I went home crying. I sat in the bus crying and I didn't care what other people thought. Then on my way from the bus station to my house something happened. There was this rainbow in the sky and it was like as if God was trying to comfort me saying "Everything is going to be fine". That was 10 years ago. I still often think about this trying not to lose hope. Remission is always possible :)

Thanks for the post. What kind of medication are you taking?

I agree. I like the positivity and hope ur thread brings ! Thnk u for sharing ! Its honest in that it we can get real down. AND honest that its important to be positive and have support. Looking forward to a better day ! Thanks again!

Up with people.

Well yeah glad your doing good but lets not sugar coat things. It is a serious condition and it is wonderful to breakaway in remission and feel great again, but we have a lot of work to do in order to avoid some nasty end games.

1 - Pyoderma Gangrenosum
2 - Colon cancer
3 - Pancreatic duct abnormalities
4 - Thrombosis/stroke ( I personally had this one )
5 - Primary sclerosing cholangitis

That said I would rather have this than be blind or paralyzed ( I was ), I would also rather have this than my child having to cope with enduring it.

rbartolo said...
aguywithuc; have you suffered with pyoderma?

No but your story got to me. I looked it up and it is connected strongly to IBD. Sounds like you have been thru hell.

Sagittal Sinus Thrombosis is strongly connected to UC as well. I had that, most painful thing in my life and came bundled with a week in the ICU for 64k and the bastages catheterized me. Being paralyzed was life changing.

This is scary - normal coagulation profile and he still got the stroke

Thromboembolic events are serious complications in patients with inflammatory bowel diseases. We describe a 30-year-old man with ulcerative colitis complicated by sagittal sinus thrombosis with normal coagulation profile; he achieved clinical remission with subcutaneous heparin.

www.ncbi.nlm.nih.gov/pubmed/10812827

Clearly the body goes hypercoag in an attempt to stop the bleeding which results in often fatal brain clot

A case of superior sagittal sinus thrombosis which was complicated with ulcerative colitis is reported. A 16-year-old male patient had a 2-year history of ulcerative colitis. He was admitted to our hospital complaining of abdominal pain, bloody bowel discharge and appetite loss, and was then treated conservatively. Two days after admission, he demonstrated generalized convulsions which were followed by right hemiplegia. MRI showed a low intensity lesion on T1 and an irregular high intensity in the subcortical area of the left frontal lobe on T2 and T2 FLAIR-weighted images. The MRI findings resembled either invasive brain tumor or local inflammation. Cerebral angiography appeared to demonstrate complete obstruction of the superior sagittal sinus with congestion of venous flow in the cortical veins. Ulcerative colitis has been reported to show hypercoagulation, leading to deep vein thrombosis within the body which sometimes causes pulmonary infarction; however, occurrence of venous thrombosis in the intracranial veins and sinus is rare. This report underscores the fact that cerebral venous thrombosis should be suspected in the case of patients with ulceritive colitis who suffer sudden onset of neurological deficits.

www.ncbi.nlm.nih.gov/pubmed/16984029

Thrombosis in patients with UC is a well-known risk

Patient dies

Although known for more than 100 years, it is only because of greater awareness among physicians and neurologists and by improved noninvasive imaging techniques that has cerebral venous sinus thromboses have been diagnosed prior to death in recent years.

Cerebral magnetic resonance imaging showed a superior sagittal sinus thrombosis and a venous infarct with a hemorrhagic component, which caused a right frontal subfalcine herniation (Figures 1 A and B). The patient had secondary generalized convulsions on the second and third days of hospitalization. An electroencephalography demonstrated right-sided, paroxysmal, lateralized, epileptiform discharges. Low molecular weight heparin, acetyl salicylic acid, and (after the convulsions) phenytoin were started, and the sulfasalazine that she had been taking was continued. On the 14th day after admission, her temperature and pulse returned to normal values, she became conscious, and left-sided hemiplegia continued. However, the number of defecations increased, and so prednisolone (40 mg/day) was added to the treatment by a gastroenterologist. On the 20th day of hospitalization, respiratory deficiency and tachycardia developed. Blood gas findings showed hypoxia and hypocapnia. A thoracic computed tomography scan performed to exclude pulmonary emboli revealed pulmonary edema. Her central venous pressure was 30 cm. Echocardiography did not show any pathological findings. She was diagnosed as having pulmonary edema and in spite of treatment, she died on the same day of this condition.

Our patient presented with severe neurologic signs and symptoms, and she had a history of newly diagnosed UC. Treatment for both conditions began, and during minimal improvement of the neurologic signs, the symptoms of UC intensified. Our patient's severe course may be explained as follows: The inflammation-induced changes resulted in coagulation activation, which induced proinflammatory effects so that a looping chain of reactions similar to that reported in the literature became manifest ultimately leading to the death of this patient14.

By presenting this case, we wish to emphasize that during the initial period of UC, patients may present with neurologic symptoms and signs, and cerebral (dural) venous sinus thromboses should be considered as a cause of this clinical picture. In instances of severe neurologic findings, the clinical outcome may be fatal.

www.jns.dergisi.org/text.php3?id=225

Post Edited (aguywithuc) : 9/26/2012 10:00:23 PM (GMT-6)

beatUC said...
I had a deep vein thrombosis, not fun and definitely connected to my UC, But yea, we must remain positive, the alternative sucks.

That was a bit negative on my part, but reframes my outlook to where it was post stroke. I remember now why I sold my home and moved here because I can choose to live now, even flaring I feel young and excited to be alive. No idea how long I will be here or how I will feel down the road.

I can also choose to keep taking ECGC and curcumin to ward off #4 and eat natural healthy food and workout in the hopes of dodging the others as well.

Here is the remedy for #2

Curative properties

Colon cancer cells die when exposed to mate's bioactive ingredients. This has been indicated in a study performed at the University of Illinois and published in Molecular Nutrition & Food Research. Researchers in the study isolated and purified human colon cancer cells in vitro and treated them with caffeoylquinic acid (CQA), a derivative of yerba mate.[33] As scientists increased the concentration of CQA—up to an amount equivalent to that in a single cup of tea—the cancer cells suffered apoptosis, or cellular death. This discovery is promising news in terms of therapeutic interventions for all types of cancer.
"The derivatives of caffeine in yerba mate not only induce death in human colon cancer cells; they also reduce important indicators of inflammation", assured Elvira de Mejía, associate professor of Food Chemistry and Toxicology at the University of Illinois. "This is important, since inflammation can unleash the spread of cancer. Briefly, the cancer cell destroys itself due to harm to its DNA", she said.
For this study, researchers were able to identify the mechanism that caused cellular death. In more detail, certain derivatives of CQA drastically reduced various indicators of inflammation (NF-kappa-B). “If we can reduce the activity of this inflammation indicator, we will be in a better position to control the transformation of normal cells into cancer cells,” de Mejía added.
Results of this study suggest that the caffeine derivatives in yerba mate are potential anti-cancer agents and could also be useful in other diseases associated with inflammation. Nevertheless, since the colon and its microflora play an important role in the absorption and metabolizing of caffeine-related compounds, the anti-inflammatory and cancer-fighting effects of yerba mate may be more beneficial with regards to the colon. Researchers involved in the study said that they will soon[when?] publish the results of another study which compares the development of colon cancer in rats which drank mate as their only liquid to that of rats which drank only water.

Post Edited (aguywithuc) : 9/27/2012 9:51:00 AM (GMT-6)