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Newly diagnosed, depressed and scared.

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Ulcerative Colitis
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Posted 10/8/2009 2:26 PM (GMT 0)

I am a 31 year old male who was recently diagnosed with either Crohns or UC. I started having sypmtoms about 3 months ago. I went to the doctor 2 months ago and I was scheduled to have a colonoscopy. I had the scope 2 weeks ago. The results of the biopsy were inconclusive so at my followup appointment, the doctor took blood for the Prometheus Serolgy 7 test. My doctor informed me that I did have inflamation in the colon and there were ulcers present. He also said he noted some slight inflamation in the small intestine. I have been on Asacol(2 pills 3X day) as well as an enema of mesalmine nightly(prescription of 4 weeks total) since the colonoscopy. 

My symptoms included diaherra, blood on tp and stool, and mucous. I never had any abdominal pain and still don't. Since going on the Asacol, the bleeding and mucous have stopped and I'm going to the bathroom much less now, though the stools are still not well formed.

I got severely depressed this morning after researching the diseases,all the medications and side effects, the surguries and about how that could relate to my future. I am not comforted by the fact that these diseases do not have a cure.

Posted 10/8/2009 2:43 PM (GMT 0)
Hi jmhill78, and welcome to HealingWell. It's really tough to come to grips with a dx of Crohn's or UC, and believe me, we've all been through what you are feeling...so please feel free to ask any questions or vent at any time...we are here for support. As for the meds, it sounds like for now you are on the typical meds -- we have a little mantra around here for UC -- treat from both ends which means of course orally and rectally. I'm glad that you've had some relief from the diarrhea and mucous -- you might want to add a bit of fiber to firm up the stools but do ask your doctor about this. As for a cure, the only way to cure UC is to have your colon removed, but many of our members have gone on to have the surgery and have had terrific results. Again, I know the dx is depressing, but do know you can have an active life with UC and remission is possible....I've been in remission for 4 years now. I think wrapping your head around having to change things up a bit is tough, but we are here to help. So again, welcome!

Posted 10/8/2009 2:44 PM (GMT 0)
Don't get depressed or scared by what you read. It can be a bit overwhelming at first, but once you get to grips with what you're going through and work out the right treatment options then things seem to fall into place.

And keep in mind that most people who post online are those who have not been doing as well with their treatments. A LOT of people respond very well to the medicines and get into remission for months/years/decades. So they don't have much of a need to post online.

It's great that the bleeding and mucus have stopped with the asacol. Keep at it.

My advice would be to read as much as you can about your treatment options so that you can then discuss them with your doctor and better understand whatever treatments you're doing.

Hope you're fine soon.
Posted 10/8/2009 2:46 PM (GMT 0)
Yep, this sucks. I was just recently diagnosed as well.

What scares me is that not only does this disease not have a cure, but now I am at a much higher risk for colon cancer in the future. I just tried stepping down my prednisone and my pain, blood and mucous came back. it was just another smack in the face that yes, this disease is real and it does not want to go away.
Posted 10/8/2009 3:13 PM (GMT 0)
Welcome and sorry you had to find your way here! This is a great place for support and information!!

I have two kids with UC - one was dx at age 10 and one at age 8 (although both had symptoms for years before the doctors kept blowing off...). I know what you mean about the fear of what the future holds. I spend alot of time in that mode, but have to remind myself to take it one day at a time. Sometimes I have to even take it just one hour or one minute at a time. We can bear anything for a minute.

As far as the fear about the medicines and stuff - I have cried over having to put my kids on them, but all any of us have is today and today my kids are growing, happy, fairly healthy and living "normal" lives. None of us know what tomorrow holds...

My hope for the future is a cure, but if not a cure then better treatments.

It is very depressing, but hold on to hope! Stay in the moment!! It is great news that you are responding to asacol, but if necessary there are other drugs out there. Go to ccfa.org and somewhere there is a teleconference that talks about the relative safety of the "big guns" drugs for IBD.

{{{{Hugs}}}} Keep us posted on what your Prometheus test reveals. My son took the old version and was negative for both Crohn's and UC, but biopsies all point to UC. My daughter took the newer one and it agreed with biopsies and said UC.

Hang around! We'll help you through this!!
Posted 10/8/2009 3:14 PM (GMT 0)
Hey, don't feel too bad! When I was diagnosed I had a 3.5 month old and had urgent diarrhea 15-20x's a day...now, I'm in a wonderful remission (NO symptoms at all) and have been since early May. I stopped having symptoms when I started prednisone in mid-March, but didn't consider myself to be in remission until I was off pred.

It is a lot to handle, but like others have said, a lot of people on this board are those who have trouble achieving or staying in remission. I really think that most people with UC do better than the majority of people on the board.

And UC *does* have a cure....colectomy. Yes, it's quite a radical cure, but at least we have the option to get rid of our colons, be rid of UC, and go on to lead a very normal life. I actually take a lot of comfort in that thought. And even though our risk of colon cancer is high, we have c-scopes much more regularly than the general population does, so if we do get it, chances are it'll be caught very early when it's still highly treatable. So don't let that concern you too much!

As to your enemas, I think you'll probably need to be on them for longer than 4 weeks. I would keep using them every night until your symptoms have been gone for a few weeks, then go to every other night for a few more weeks. Then I would really urge you to think about staying on a maintenance dose of twice weekly (which is what I'm doing). There are several studies showing that people who use enemas twice weekly stay in remission for longer than those who don't.
Posted 10/8/2009 3:44 PM (GMT 0)
Sorry about your troubles. My only suggeston is to make sure you have a doctor that you like and trust, and that you feel comfortable with. My son is the UC sufferer, and it took several tries before we found the right fit. It is alarming how many folks are being diagnosed with gastro problems. There are so many drugs out there. Try to THINK POSITIVE!! I know that is easier said than done....... I always found this board to be informative, but some posts were quite frightening. Just remember, the scary stuff does not have to happen to you.
Posted 10/8/2009 6:06 PM (GMT 0)
Keylime I had a question for you. Do you have a family history of UC? I am also terrified my kids will eventually get sick. Hope all is well. Thank you
Posted 10/8/2009 6:28 PM (GMT 0)
LookingForTheCure, your idea is nice, but our sigs aren't supposed to be over 10 lines......
Posted 10/8/2009 7:04 PM (GMT 0)
ColitisBoy, there is no family history of IBD on my side of the family and I have a huge extended family.

My husband's niece (his sister's daughter) is the only member on his side of the family with it. She was dx around age 14 or so (she is now nearing 30 and had a j-pouch while in college). That's it. I don't know how/why 2 or our 3 kids ended up with it (for my husband's sister, 1 of her 4 ended up with it) or why they were all dx while young.

I understand about your worry. My daughter often says that she will not have kids so as not to pass UC on to her kids that she will adopt instead, but of course she is only 10. My son doesn't talk about what he thinks about the risk of passing it on.

My hope and my prayer is by that time there will be a cure or an effective treatment that makes it a non-issue!
Posted 10/8/2009 8:57 PM (GMT 0)
Thanks for responding Julie. I wish both of your children health!
Posted 10/8/2009 9:44 PM (GMT 0)

Greetings and welcome to HealingWell!  Getting the dx is hard, I was just turning 30 and tired of feeling bad and having no explanations for losing weight, having severe diaherra. After I found a great GI doc, got the right tests I got the dx of UC, severe pancolitis. I found knowledge is power and it helped me tackle the treatment plans quickly. You can gain some relief with diets and the right meds can help you live a "normal" life. I too fear that I may have passed this along to my kids, but hopefully not. I know the symptoms and signs to watch for so I do as we live each day.

Posted 10/8/2009 11:50 PM (GMT 0)
Hang in there and if you think you are too depressed, talk to your doctor or someone about it. I take antidepressants and feel they help a lot. It takes a while for the meds to get in there and take effect. This forum is great. It helps so much to know there are people who are here to help and they are great. Take care and good luck.
Posted 10/9/2009 5:42 PM (GMT 0)
Forgot to ask you to let us know how the prometheus tests come out. I am interested in them. Although they told me I had colitis related to diverticular disease, my blood test at prometheus came out positive 1:120 for crohn's....

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