Re: just diagnosed with PSC

[Guest guest]

Welcome Randy,I am glad that Ross directed you here. There are lots of great folks here who will answer yourquestions. My son was diagnosed with PSC/UC in 04. He was a junior in college. In 05 he had a total colectomy and J pouch. We tried everything we could to save his colon but it was the colectomy that gave him his quality of life back. Should you need to go this route , don't be afraid. You can also find out more about PSC by going to the PSC Partners Seeking a Cure website.www.pscpartners.org and reading the newsletters on file.Welcome to the group, ask your questions, someone will answer.Lee mother of Bill 25 PSC/UC 04 J pouch 05 I'm a 46 year old male recently diagnosed with PSC. I am full of anxiety and worry of what to expect down the road. While I was recently in the hospital a kind soul by the name of Ross directed me to this support group. I have crohns disease as well and with the recent dysplasia found in my colon I am trying to preparing myself mentally for a colectomy to be done in early July. any kind of support would be extremely helpful

[Guest guest]

>I was diagnosed with PSC about 3 years ago, i had colitis for probably

16 years before i had to have my entire colon removed and the doctor

gave me a j pouch. It was the best thing! Finally no more pain and

cramping. They tell me the PSC takes years till you get really sick.

So far the worst part of the PSC has been the itching (thank goodness

for the Questrin). Once you have your colectomy you won't believe how

sick you were, because you will finally feel good.

>     I'm a 46 year old male recently diagnosed with PSC. I am full of

anxiety and worry of what to expect down the road. While I was recently

in the hospital a kind soul by the name of Ross directed me to this

support group. I have crohns disease as well and with the recent

dysplasia found in my colon I am trying to preparing myself mentally

for a colectomy to be done in early July. any kind of support would be

extremely helpful

> Thank You,

> Randy

>

[Guest guest]

Randy -

Typically you will hear from a number of people regarding specific thoughts or questions. On a holiday weekend, the emails tend to be sparse. A number of people have had a colectomy - so if you have questions or want other people's thoughts - you may want to post again next week.

This is a wonderful group for support and information. Take care.

Joanne H

(, Ca., mom of , UC/PSC 2-06; JRA 1998)

I'm a 46 year old male recently diagnosed with PSC. I am full of anxiety and worry ,,, I have crohns disease as well and with the recent dysplasia found in my colon I am trying to preparing myself mentally for a colectomy to be done in early July. any kind of support would be extremely helpful

Thank You,

Randy

[Guest guest]

Thank you for your answer, its very reassuring.

Re: just diagnosed with PSC

>I was diagnosed with PSC about 3 years ago, i had colitis for probably 16 years before i had to have my entire colon removed and the doctor gave me a j pouch. It was the best thing! Finally no more pain and cramping. They tell me the PSC takes years till you get really sick. So far the worst part of the PSC has been the itching (thank goodness for the Questrin). Once you have your colectomy you won't believe how sick you were, because you will finally feel good.> I'm a 46 year old male recently diagnosed with PSC. I am full of anxiety and worry of what to expect down the road. While I was recently in the hospital a kind soul by the name of Ross directed me to this support

group. I have crohns disease as well and with the recent dysplasia found in my colon I am trying to preparing myself mentally for a colectomy to be done in early July. any kind of support would be extremely helpful> Thank You,> Randy>

[Guest guest]

Hi Randy,I had a colectomy in 2000 due to many adenomas (polyps with precancerous cells), and innumerable psydopolyps. Once you get extensive dysplasia, you have no choice really but to have the colectomy. It can be extremely difficult to go through this, since you may have no symptoms and your Crohn's may be in remission. But you may have no choice - it may need to be done if you want to live. IF you're sick with Crohn's, then maybe the surgery will make you feel better. IF you have no symptoms of Crohn's or cancer, then the surgery will likely be a shock to your system. You'll go to the bathroom more frequently. You'll probably have bowel movements at night, but things do get better, and you do get used to it, and learn to live with it. The surgery should NOT stop you from doing anything you want to do. You should have control over your bowels. You will need to be very careful to stay hydrated, since you'll be having so many bowel movements (3-8 per day is fairly normal). And often the BMs will have the consistency of diarrhea.If you're having a j-pouch, and it's more than a one-step, then there can be some leakage, but hopefully it should be temporary. A good resource is the j-pouch.org group. This is a great resource, even if you're having a colectomy, and not a j-pouch.As to the PSC, hopefully it will be years before you have any symptoms. You need to deal with one thing at a time anyway.Marie

To: From: ran20550@...Date: Fri, 23 May 2008 20:40:47 -0700Subject: just diagnosed with PSC

I'm a 46 year old male recently diagnosed with PSC. I am full of anxiety and worry of what to expect down the road. While I was recently in the hospital a kind soul by the name of Ross directed me to this support group. I have crohns disease as well and with the recent dysplasia found in my colon I am trying to preparing myself mentally for a colectomy to be done in early July. any kind of support would be extremely helpful

Thank You,

Randy

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