What a pain?

[anyone]

Hey, I got diagnosed with Chron's less then a week ago. I was told that its in my small bowel near the terminal illium. Anyway, I'm taking 40mg of Prednisone right now. I feel better. I have more energy and I actually have an appetite, which I'm starting to think is a bad thing. I'm eating very soft foods and not very much at a time. Problems is, I just want to eat without worrying about being in pain all the time. If it was not for the Prednisone induced appetite, I would not be eating period. Even drinking Boost causes pain. I think if I ate something large I would be in the ER rather quickly.

I feel like the food I eat is not making in through. It feels like it is sitting there burning my guts. I'm also passing very little stool, which painful because I have all the urgency associated with the D, without the ability to go. I'm scared that I have scar tissue that is making my small bowel to narrow to pass food through. Is there a way that they can test for this? How can they tell between scar tissue and inflammation, when they use an MRI? If its just the inflammation causing the narrowing, how long should I wait for the meds to clear it up?

 

[CLynn]

When was your last scope? I have never had an MRI done, only scopes, but before I had my resection, I had many different bouts of the narrowing slowing things way down, causing pain and nearly obstructing. But it always passed. If you are flaring right now, the inflammation in addition to the scar tissue could be causing your symptoms.

 

[anyone]

I had a Endoscopy, and a Colonoscopy very recently. Both of these were viewed as normal. I had an MRI of my small bowel in the ER and they said it was definately abnormal. I don't think the scopes can get to were my inflammation is. I have heard other people need a pill cam to see theirs also. I need to get a copy of the reports. My gastro doctor came and talked to me a few times but it was not for very long. I was also not able to absorb much of what he was saying. Blood tests also showed lots of inflammation. They diagnosed me with Chron's and released me after 5 days.

 

[Jennifer]

Sounds like a partial obstruction caused by inflammation as for scar tissue, its a possibility as chronic inflammation causes it among other things. Its possible that Prednisone alone may not be enough. Did your GI talk about any other meds that might help prevent more inflammation from occurring (like Ascacol etc)? Prednisone usually starts working within a few days as you've noticed already but as far as how long it will take to reduce all that inflammation, I don't really know. Could be a couple weeks to a few months. Another test you may consider is a small bowel follow through/barium swallow (you drink barium and they take x-rays). That test will show inflammation and scarring or even any ulcers etc. that occur in the small bowel. I'd be careful with a pill cam as you're already having difficulty passing small amounts of soft foods. Always keep in touch with your GI and let them know if any of your symptoms change. They can answer questions over the phone rather than needing to wait for an appointment.

 

[anyone]

Crabby, thank you for the response. I have an appointment with my GI tomorrow. This is the first one I have had since I have been out of the hospital. I will ask him about other medication. I'm also going to ask him about the Prednisone. This disease worries me. I have been estranged from my mother for many years but she never ate solid food when I was a kid. She drank nothing but Carnation instant breakfast for 15+ years. She was also low functioning and I has not had a job since I was about 6. To my knowledge, she has never been diagnosed. She was just told she had a spastic colon and IBS. She uses medical Marijuana pretty heavily also.

I don't want to be low functioning. I have a good job and I'm still trying to finish my masters degree. I just need to finish my thesis but my medical stuff has been a problem. Luckely, I think with this diagnosis, I can get a medical extension because the time to finish my degree has expired. My symptoms started in graduate school and it was very difficult for me. I'm just venting at this point. I have only been on meds for a week and I'm already complaining. HA HA. I'm actually very happy to be feeling better. My stomach hurts but I'm used to that. The thing that scares me is the unknown. I want to have a family and get married. My mother was so low functioning that she never left the house or did anything with us kids. I spent a fair number of years in foster homes. I will not have kids if that is the road I'm going down.

 

[Jennifer]

Don't worry, you wont be going down that road. You've already taken the first and most important step, getting a diagnosis and accepting treatment. As long as you keep up with the doctor visits and have a good doctor you should be well on your way to remission and a great life ahead of you. Sure you may have a flare again and again but remission is still possible as long as you continue treating the disease by whatever means.

I too went to grad school (don't have a job yet though cause there aren't many for us sculpture teachers ) and have found someone who accepts me for me and we plan on getting married this Sept. After that we do plan on having children. Even though I'm still receiving SSI for Crohn's I have set myself up to have a good job in the future by finishing school. You're giving yourself that opportunity too. Less focus on the future though and more focus on your health now so you can have a good future.

 

[anyone]

Crabby, your story is inspirational to me. I'm glad that you are able to look toward the future even while you are dealing with this disease. It definitely gives me hope and I thank you for that. I will try and focus on getting better. I think I'm just going through the stages of grieving right now. I'm ready for acceptance. Denial has not worked and "why me," is not much better. I'm going to see my doctor tomorrow. I will let you guys know how that goes.

 

[CLynn]

Crabby, your story is inspirational to me. I'm glad that you are able to look toward the future even while you are dealing with this disease. It definitely gives me hope and I thank you for that. I will try and focus on getting better. I think I'm just going through the stages of grieving right now. I'm ready for acceptance. Denial has not worked and "why me," is not much better. I'm going to see my doctor tomorrow. I will let you guys know how that goes.

You will go thru the stages, we all do, and there may be times again when it gets you down, but you will get thru those too, and you can always vent to us here, we get it more so than others. I was diagnosed with it in college. I finished (albeit a year and a half later than I should have, but did it), went on to get married and have 2 children. It never occured to me to NOT go on with my life, I won't let Crohn's take away anymore than it has to. You will be fine, as Crabby said, keep the appts, take the meds when you should and keep smiling! Hugs!