Hi everyone! The Crohn's Forum has been so helpful to me I just had to join! I am a 63 year old woman. I was diagnosed with ulcerative colitis when I was 27 years old. I managed to have two babies in between flare ups and meds. After my second baby I was hospitilized for 7 weeks and had TPN feeding and prednisone. A few months later a new flare up had me requesting surgery. I had my colon removed and an ileostomy was constructed. I was cured! Unfortunately, I developed ovarian cysts (I blame the prednisone) and had a complete hysterectomy at age 32. Luckily, I had fourteen years of good health and was able to be an active mom. I taught preschool part time, had a large garden and learned to ride and care for horses. Then the blockages began. (End of my riding hobby.) The docs thought the blockages were caused by surgical adhesions. Each episode was separated by long periods of no symptoms and good health. Some blockage episodes had to be dealt with in the emergency room with IV fluids and pain meds until the blockage cleared on its own. About 2 months ago I experienced a minor blockage that cleared without a hospital visit, but the cramps, or shadow cramps, kept coming back for the next three weeks. Then, wham! Major blockage, emergency room, etc. This time a CT scan was ordered and I was admitted. I also had a scope of the first section of bowel through my stoma. Surprise! I have Crohn's and my UC diagnosis was probably wrong. I've probably had Crohn's all this time. The blockages were caused by scarring from Crohn's flare ups. Of course, this time I'm avoiding surgery at all costs. I started Azathioprine, but after 12 days, had to stop because of reactions to the med. I experienced worsening nausea, then chills, aches and finally fever. I have just completed a week of no meds to clear my system. Tonight I start 6 mp. Wish me luck!
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Crohn's Newbie Michele
- Thread starter MicheleM
- Start date
Hi Michele,
I don't know what else to say other than good luck! It's nice that you've been able to be as active as you have for your kids and have had a rewarding job. I bet it still feels like you've really been through the ringer! I hope the new meds help to get things under control for you so you can get back to enjoying life!
I don't know what else to say other than good luck! It's nice that you've been able to be as active as you have for your kids and have had a rewarding job. I bet it still feels like you've really been through the ringer! I hope the new meds help to get things under control for you so you can get back to enjoying life!
Thanks for the encouragement, Pointy Ears. I'm also a Star Trek fan.
Unfortunately the 6mp was a failure. Five hours after ingesting it I had violent chills, nausea, vomiting, followed by fever, sore joints and muscles and mottled skin. I really don't want to try any more meds. My best friend is a rabid paleo fan, so I'm going to try the paleo diet. I'll check out the paleo threads on the forum, too. Thanks again for the encouragement!
Unfortunately the 6mp was a failure. Five hours after ingesting it I had violent chills, nausea, vomiting, followed by fever, sore joints and muscles and mottled skin. I really don't want to try any more meds. My best friend is a rabid paleo fan, so I'm going to try the paleo diet. I'll check out the paleo threads on the forum, too. Thanks again for the encouragement!
Update on MicheleM. I've been sticking to the Paleo diet for the last month, and I'm very happy with the results. I had a scope of the small intestine (pretty easy procedure for me, since I have an ileostomy). The GI doc expected to still see 'a fair bit of inflammation' and we talked about drug alternatives before the scope, since I've had such sensitivity to Aza and 6mp. We agreed to try Entocort, if I needed to have medication. After the scope, the doc's note said a 'small amount of inflammation, no medication at this time, will follow symptoms'.
Since being on this diet I've noticed a significant change in the output from the ileostomy. (Sorry, but I guess we all talk about it.) Better consistency, less watery. I drink a lot of water and make a vegetable smoothie every day. I'm eating more vegetables and a greater variety of vegetables than I have for years.
The unexpected bonus from all this is the delicious recipes I've found on the paleo sites. My husband and other family members are really enjoying them. I miss the taste of cheese, but I'll stay on the diet.
Since being on this diet I've noticed a significant change in the output from the ileostomy. (Sorry, but I guess we all talk about it.) Better consistency, less watery. I drink a lot of water and make a vegetable smoothie every day. I'm eating more vegetables and a greater variety of vegetables than I have for years.
The unexpected bonus from all this is the delicious recipes I've found on the paleo sites. My husband and other family members are really enjoying them. I miss the taste of cheese, but I'll stay on the diet.
I'm glad the diet is working for you it sounds really positive! It's given me the inspiration to try more paelo things. But that being said there is too many things I'd miss going full on. I may go gluten free in 2014 but I already have a lot of changes I want to make in my life and I'm worries one more will push me to breaking point!
Well, Pointy Ears, I think the Paleo diet is not so much what you do eat, as what you don't eat. We Crohnies all seem to be sensitive to different foods or additives and many seem to learn over time what causes unpleasant reactions or discomfort. My husband and I went gluten free a couple of years ago (the Wheat Belly book) and I noticed that the occasional arthritis pain in my hands and feet disappeared. We kind of slid back to our former diet over time.
My friend (who has followed a modified paleo diet for a few years) came to stay with us for 2 weeks last Sept, so we tried to make meals with her in mind. I noticed a positive change in my bowel output, but just filed it away in my mind. I wasn't in a noticeable flare or cramping, so I didn't really think about it too much.
When I had the hospitalization and diagnosis in Oct, then the bad reactions to the medications in Nov, I felt that I had to do whatever I could on my own to improve my chances over time. I've still got a lot of living to do! I went on a strict paleo diet, stricter than my friend's. But I found it wasn't so much what I was now eating, it was what I wasn't eating, namely grains, dairy, legumes and most processed sugars. I was shopping in the fresh food aisles, not the packaged food aisles.
If you've 'resolved' to make other major changes in 2014, I can understand your reluctance to add another change to the pile. But you might just keep it in mind when putting food on your plate to bypass the rice or pasta, or beans on toast. Take an extra helping of the veg instead. If you notice a positive change in your health and well-being, it will encourage you, and possibly make the other resolutions easier to
follow.
Thanks for the conversation and encouragement, Pointy ears. Live long and prosper!
My friend (who has followed a modified paleo diet for a few years) came to stay with us for 2 weeks last Sept, so we tried to make meals with her in mind. I noticed a positive change in my bowel output, but just filed it away in my mind. I wasn't in a noticeable flare or cramping, so I didn't really think about it too much.
When I had the hospitalization and diagnosis in Oct, then the bad reactions to the medications in Nov, I felt that I had to do whatever I could on my own to improve my chances over time. I've still got a lot of living to do! I went on a strict paleo diet, stricter than my friend's. But I found it wasn't so much what I was now eating, it was what I wasn't eating, namely grains, dairy, legumes and most processed sugars. I was shopping in the fresh food aisles, not the packaged food aisles.
If you've 'resolved' to make other major changes in 2014, I can understand your reluctance to add another change to the pile. But you might just keep it in mind when putting food on your plate to bypass the rice or pasta, or beans on toast. Take an extra helping of the veg instead. If you notice a positive change in your health and well-being, it will encourage you, and possibly make the other resolutions easier to
follow.
Thanks for the conversation and encouragement, Pointy ears. Live long and prosper!
any time, encouragement, support and a friendly natter is what this forum is all about. I do tend to eat a lot more veg than carbs now. But I know going Paelo I'd miss out on pizza and burgers and other things that I really enjoy. Plus I do a lot of home cooking so I don't eat a lot if any processed foods. But 2014 I'll be looking harder at what I drink and a few general life style choices around sleep and exercise.Like David one of the founders (not the shape shifting kind) I believe Ina shotgun approach to crohns and treating with meds, diet and exercise. So I'm still looking to find the right balance. It's really nice to hear positive things about diet from a wide range of people, gives me a clearer picture of things to consider trying.