Hi there I am new to the group. I was diagnosed with PSC in 2009 but until recently havent had any symptoms. I currently just got released from the hospital but am still fighting this "flare" of colongitis... I am wondering if anyone else suffers from really bad headaches & blurry vision when suffering from Colongitis. I am having those symptoms along with typical abdominal pain.. I am very new to learning about PSC but lived with Ulceritive Colitis for more than 20 years resulting in a colectomy. If anyone has any suggestions Id love to get feednback.
Welcome to the group. We are new as well. My husband, Ed, was diagnosed with PSC eight years ago. Before that he was just diagnosed with ulcerative colitis and was told a total colectomy would cure him. He went ahead with the surgery and subsequently had a series of infections, pancreatitis etc until his diagnosis of PSC. I work in the medical field so I am constantly researching this disease for him. He has excellent doctors and right now is only on Questran for his itching but he does have bouts of blurry vision and some headaches. Of course he blames these symptoms on needing new glasses and sinus headaches but I feel its a result of the PSC. I don't really have any suggestions for you but wanted to let you know you are not alone.
My son has recently been diagnosed with PSC with ulcerative colitis overlap (we were very very fortunate to see a gastroenterologist at Birm Childrens hosp who had previously worked in the liver unit) - he also suffers occasionally from very bad headaches - so you are doubly not alone (son currently on urso for the psc and mesalazine for the colitis) - thanks also for posting - makes me realise I am not alone
I'm also sort of new to PSC, and believe there is some ulcerative colitis along with this. I get concerned b/c I will pass huge white cyst like things, which I'm assuming are the ulcers. I had to switch GI doctors b/c he was throwing every dx in the book at me, and none of which correlated to my symptoms. I can only say that the headaches and blurry vision might make you want to see if your doctor will check your ammonia level. I get horrible frontal headaches when my ammonia level is high and I feel disoriented, it's a terrible feeling, you feel toxic, actually. I'm on Creon for pancreatic insufficiency and finally, after one year after my botched cholecystectomy, my new GI is sending me to Cedars Sinai! I assume that I will need a metal stent, which I suppose they say stays in long term, like one year? I didn't have UC prior to the PSC but they sort of came on together. I can actually feel my bile duct when it spasms from the SOD dysfunction. They had to cut the ampulla open in April, so I believe at that time, I approached 14 hospitalizations. I suffer from low-grade fevers as well.
From what I read, ulcerative colitis is a result of PSC. My husband's doctors in NJ never worked him up for PSC even though he had a lot of symptoms which started at age 38 with abnormal LFTs. It was only after moving to Florida and a bout of pancreatitis which hospitalized him did he find an excellent MD who did a liver biopsy and gave him the diagnosis. He's been doing fairly well on Urso Forte and Questran for itching but recently developed high ammonia levels. He does see a liver transplant MD once a year, hopefully he will stay off this list as long as possible. He had a triple bypass surgery four year ago, I attribute this to the PSC since he has no coronary risk factors at all. I think the inflammation in his body attacked the coronary arteries since he had his colon totally removed eight years ago. He's been doing well with an exercise regimen and modifying his diet to more organic and natural items.
Hi Joy - do you have any diet suggestions (my 13 yr old has recently been diagnosed with PSC and UC) we were very very lucky to go to the UK's foremost child gastro/liver centre so the Dr who saw us look at his LFT's and knew straight away what his issue were - I am really keen to try and do anything I can to help him out
My daughter was diagnoised at the age of 12 and transplanted at the age of 21 six weeks ago. We placed her on Dr. Cox of Stanfords treatment for PCS and all of her crohns sympotms resolved. Unfortunately her PCS was to far advanced for the treatment to resolve. The Mayo inrochester is now conducting trial of his treatment. If it were myself i wouldnt wait for the trials.
Evan
Thank you everyone for your posts. Its good to not feel alone. I have never heard of checking my ammonia levels. I am 35 I was diagnosed with UC when I was a child at the age of 10 so rcmoore50 if you have any diet questions Ive been thru a lot with UC.
Yes I get the headaches, dizzy (so dizzy at night I fear getting up to walk) and am having blurred vision. Not much appetite and my doc just called and told me to head to the ER. I hate the ER not to mention being a single parent its so tough to just drop everything and go there. I may see how tonight goes and go in the morning. Yuck!
rcmoore50 said:
Hi Joy - do you have any diet suggestions (my 13 yr old has recently been diagnosed with PSC and UC) we were very very lucky to go to the UK's foremost child gastro/liver centre so the Dr who saw us look at his LFT's and knew straight away what his issue were - I am really keen to try and do anything I can to help him out
We've been trying to eat a lot of fish, mostly Salmon but nothing farm raised. Also free range chicken (nothing fed with hormones or antibiotics). Also been juicing a lot with fresh fruits and vegetables but this can get a bit tiring. It's a lot easier to just open a bottle and pour but we trying to stick with it.
I've also noticed something odd that the doctors cannot figure out. Since having his entire colon removed, Ed is constantly having loose bowel movements which the doctors warned us about but whenever he takes antibiotics, his stools before more solid and he doesn't have to go as often. No one can give me an answer since taking antibiotics usually would have an opposite effect. I've also given him Culturelle to take and this seems to help a little but antibiotics work much better. I'm wondering if anyone else has this reaction.
thanks Joy! and Lilysmomma!
What doctor follows you a GI or Hep doctor? I am being bounced around. And am on no meds for PSC other than Cipro for infection right now and pain meds and nausea...
Dr Cox treatment for PSC which is high dose Vanco not only seem to cure the PSC but in my daughters case resolved her crohns symptems. It seems logical that these diseases may have a underlying infection involved. How long did it take us to realise that stomache ulcers were caused by H pylori. The doctor who discovered this was ridiculed for years until it was shown that he was correct. I believe that Dr. Cox may hace found the cure here is a link to a articale on him.
Ed sees a GI and follows up once a year with the liver transplant MD. It is very important to get a doctor who is extremely knowlegable and agressive with this disease.
Lilysmomma said:
What doctor follows you a GI or Hep doctor? I am being bounced around. And am on no meds for PSC other than Cipro for infection right now and pain meds and nausea...
I just printed out a copy of this study and can't wait to read it. I knew I wasn't crazy. Every time Ed took an antibiotic he had a positive reaction but the doctors all looked at me like I had three heads.
ubob said:
Dr Cox treatment for PSC which is high dose Vanco not only seem to cure the PSC but in my daughters case resolved her crohns symptems. It seems logical that these diseases may have a underlying infection involved. How long did it take us to realise that stomache ulcers were caused by H pylori. The doctor who discovered this was ridiculed for years until it was shown that he was correct. I believe that Dr. Cox may hace found the cure here is a link to a articale on him.
hi - my son is with GI for primary care and they do blood tests at each appt which they send also to the liver team - we are very very lucky in that my son is with Birmingham childrens hospital in the uk who are ace at dealing with this - we are due to see the hep team in a year - at bch they all work really closely together
I have a GI and Hep doctor and they bounce me back and forth. I am in the US in San Diego. This whole blurred vision and headaches is just terrible. Im so sorry your young son has to go thru this. I know 1st hand that it stinks dealing with it in High School. (Or any time for that matter) all my doctors are within UCSD but Im very frustrated with them.
I think we were very lucky in that the GI doctor we saw had lots of experience in hepatology - we had spent 2 years with our normal doctor and within 2 weeks of going to the childrens hospital they had him on his meds - and thanks for your kind wishes, mind you as a mom i certainly worry more than he does !! sorry to hear you are being bounced back and forth - that is so frustrating
Hi, my 5 yo has recently been diagnosed with psc. He’s had uc for 4 yrs and results from liver look like PSC has been there for some time. He doesn’t articulate what he’s feeling so I can only assume that his extreme behaviour at times is due to pain or nausea. As I don’t have psc or uc, I can only guess what he’s feeling. I havent read anything about blurred vision or headaches in texts one of the reasons I’m on here, to find out what he’s dealing with from people who know.
I just read the study from Dr. Cox where he gave Vancomycin as a treatment to children with PSC with excellent results. I am going to have Ed speak to his doctor tomorrow to see if he can try the drug. I know he's well pass childhood years but it might help him feel better.
Diet and ammonia are not really related from what I was told. The only thing that will reduce it is the use of lactulose, which I take every day. It is some sort of conversion with the urea and the liver that doesn't happen appropriately. My ammonia went over 100 and I was extremely sick, fevers, sweats, ringing (tenitis) in my ears, dizzy, nauseated, diarrhea, it is a horrible thing, and it is extremely toxic. If you have ammonia levels that are elevated, you will also smell it in your urine, stool, and your breath. I had it to bad that I actually had to leave my home from the toxicity. It was like a haz-mat spill. It is extremely dangerous and can cause encepholopathy. Lisa