Hi. I am 48 years old and have always been healthy and had no stomach issues of any kind until 6 months ago. It had been a very stressful year, I was taking birth control pills for the first time and I was drinking sweet tea like an addict every day. I think all three factors contributed to my illness. I'm a teacher, so when I became ill with diarrhea and malaise near the holidays I just assumed that I had picked something up from one of my students. The diarrhea persisted and finally I started passing blood with it, so I went to a gastro. He did a colonoscopy and said that I had Pancolitis. Every bit of my colon was extremely inflamed and had what looked like sores. He said it was Ulcerative Colitis and wanted to put me on steroids right away. I wanted a second opinion, so I drove the 6 hours to the Mayo clinic a few days later.The Mayo doctor said that biopsy proved it was Crohn's because of granulomas and he gave me Lialda. My CRP was 60, which I understood to be very high. I felt fine quickly on the Lialda and a follow up a couple of months later showed my CRP to be normal. I was having a couple of solid stools each day and no problems. Then a few months ago I got a horrible stomach flu. I had a high fever and stomach pain and not knowing any better I went to the hospital. They thought it was Crohn's related and admitted me. The CT showed no evidence of Crohn's and they realized that it was the flu, but I was given such high doses of antibiotics before they realized it was just the flu that even the nurses questioned the dosages. Well, that visit changed everything. I still feel okay, but now I usually have three soft stools each day and my local doctor wants me on steroids again. I'm going back to Mayo next week to see what they say. I don't think I should have to be on steroids with no symptoms other than my stools being soft and more than twice a day, but I really don't know anything about his disease. Any advice would be appreciated. Also, does Crohn's always progress? Is it possible to not have it get worse? thanks. Tina
New to Crohn's; not sure what to expect
- Thread starter tmgread
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Help Support Crohn's Disease Forum:
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Hi Tina and welcome. I don't really have any advice for your particular circumstances, but just wanted to say Hi and hang in there. I'm sure there is someone here that will show up soon with some ideas. We all have different symptoms and what works for one of us does not work for another. It can be a very confusing, individual disease. I was diagnosed 5 years ago after many years of abdomen issues. Was treated and stayed in remission until April. This is the worst flare I've ever had, but I believe it's because I was not on any maintenance meds, my stress level was extreme, and my diet was very bad. My personal opinion is that sometimes the disease advances according to how well we manage it. We take care of our selves, it does better than when we don't. But there are cases where it just flares with a mind of it's own. Hope you get some answers and relief soon and keep hanging out here. There is a lot of wonderful people and I'm sure you'll get some useful support.
DustyKat
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Hi Tina and :welcome:
First up I think, by what you have said, it is a good idea that you are going back to the Mayo to seek their advice. Tests can also be confusing so I wouldn't necessarily rule out that Crohn's wasn't the culprit when you were admitted, particularly in view of the fact that you have had ongoing issues. Roo had grossly normal CT results with extremely active Crohn's happening. I'm not suggesting that this is the case with you but it just may be something to think about.
As Bev has explained this can be a very tricky disease. As to whether it will progress, well that is difficult to predict as it is a disease that tends to be thought of in terms of remissions and flares rather than progression.
Perhaps before you go for your appointment next week, write down any questions you have about your symptoms, how you are feeling, your treatment and what to expect in the future. Browse the forum and you may pick up some ideas as to what you want to know. Also while you are there gather as much literature and information as you can about Crohn's.
You have certainly found the right place for support, information and experience here. Keep us posted on how things go and any questions just fire away.
All the best,
Dusty
First up I think, by what you have said, it is a good idea that you are going back to the Mayo to seek their advice. Tests can also be confusing so I wouldn't necessarily rule out that Crohn's wasn't the culprit when you were admitted, particularly in view of the fact that you have had ongoing issues. Roo had grossly normal CT results with extremely active Crohn's happening. I'm not suggesting that this is the case with you but it just may be something to think about.
As Bev has explained this can be a very tricky disease. As to whether it will progress, well that is difficult to predict as it is a disease that tends to be thought of in terms of remissions and flares rather than progression.
Perhaps before you go for your appointment next week, write down any questions you have about your symptoms, how you are feeling, your treatment and what to expect in the future. Browse the forum and you may pick up some ideas as to what you want to know. Also while you are there gather as much literature and information as you can about Crohn's.
You have certainly found the right place for support, information and experience here. Keep us posted on how things go and any questions just fire away.
All the best,
Dusty
Hi Tina, welcome to the forum. I'm with you on the 3/day soft stool. EJ still averages about 3 even after the pred and being on 6mp and asacol for 7 months. I'd say you are going to one of the leading research institutes for answers so, like Dusty suggests, make sure you have your questions written and ready. Good luck!!
Thank you
Thank you for the responses and welcome. I think the fact that Crohn's is so individual is what makes it so difficult to cope with. If I knew what to expect, I would feel better about getting a handle on this disease. Not to mention, there is so much conflicting information out there. I've only had this disease 6 months and with all of the hair loss and weight gain I can hardly recognize myself, so I can't imagine years of it.
Tina
Thank you for the responses and welcome. I think the fact that Crohn's is so individual is what makes it so difficult to cope with. If I knew what to expect, I would feel better about getting a handle on this disease. Not to mention, there is so much conflicting information out there. I've only had this disease 6 months and with all of the hair loss and weight gain I can hardly recognize myself, so I can't imagine years of it.
Tina
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- Jun 21, 2010
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Hi Tina and welcome !
Just wanted to say hey ! It is so confusing as so much info out there and I always found that what one person would say was right the other wouldn't agree it does get a bit much. As Dustycat said, note down some questins and ask as many as you can on your next Gi visit. Also a food diary could help you, just jotting down what you eat and what symptons you have on a daily person, this might help you realise some trigger foods if any.
Be positive as you will have lots of support
Jo x
Just wanted to say hey ! It is so confusing as so much info out there and I always found that what one person would say was right the other wouldn't agree it does get a bit much. As Dustycat said, note down some questins and ask as many as you can on your next Gi visit. Also a food diary could help you, just jotting down what you eat and what symptons you have on a daily person, this might help you realise some trigger foods if any.
Be positive as you will have lots of support
Jo x
Astra
Moderator
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- Jan 21, 2010
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- 5,870
Hi Tina
and welcome
I concur with others, but also to say there's a reason for the steroids and it's nowt to do with BMs! It's about inflammation and they will heal you nicely, and any weight gain or other side effects are a small price to pay! by healing your inflammation, Pred will reduce strictures caused by inflam, and also avoid narrowing or blockages!
glad you found us for support, lots of friends here for you
lotsa luv
Joan xxx
and welcome
I concur with others, but also to say there's a reason for the steroids and it's nowt to do with BMs! It's about inflammation and they will heal you nicely, and any weight gain or other side effects are a small price to pay! by healing your inflammation, Pred will reduce strictures caused by inflam, and also avoid narrowing or blockages!
glad you found us for support, lots of friends here for you
lotsa luv
Joan xxx
