Introduction

[mnijihc]

Hi Everyone,

I am still rather new to all of this, technically I don't have a confirmed diagnosis but there is not much to do before that. As one doctor said to me last week "If you looked up Crohn's in a textbook, there could be a picture of you". We just haven't done a scope yet. I was diagnosed through a CT scan which showed terminal ileitis and visible slightly enlarged lymphnodes. Stool samples were negative for everything, my CRP and ESR are fairly elevated, my B12 and Iron are low. Eating hurts. There aren't really foods that don't hurt, but there are foods that hurt less. I do have D and C, depends largely on the day. I am also a 22 yr/old female with a family history of IBD and autoimmune "stuff" for lack of a better descriptor.

I have been started on prednisone but I hate it. It has been less than a week and already there are a ton of side effects. I meet with the GI in a few weeks and I guess I go from there. I have been lurking on this board for a few weeks, just reading and trying to learn from all of you and I thought it was time I register and introduce myself and maybe start participating in the discussion!

 

[JThorn676]

Welcome to the forum! Im sorry you hear you aren't well right now. Do you have scopes scheduled? Is the prednisone helping with your symptoms at all?

 

[mnijihc]

Thanks!

No scopes scheduled yet, no. Waiting for the GI consult first. So far, no relief from the pred, only side effects.

 

[JThorn676]

I missed the part about you meeting with the GI in a few weeks. Sorry! I'm sorry the pred doesn't seem to be relieving your symptoms. I haven't ever been on it before so i'm not sure how long it takes to see a difference in your symptoms.. i'm sure another person will be able to help with that though.

 

[mnijihc]

People, doctors and pharmacists that is, seem to think I should be feeling an improvement already. I agreed to stick it out til I see the GI but if it is still bad news I am going to beg for a fast taper and a different drug. Right now I am on 40mg/day for 2 weeks and then a 5mg/week taper. Basically I will be on it til mid-august. I was put on this dosing by a GI in an ER who I agreed I clearly needed something between now and the consult, which is on the 6th.

I have noticed physical activity really sets me off. I have cerebral palsy as well, just in my legs, and I used a manual wheelchair to get around and I find I am in way more pain in my chair than I am when I am at home. If I am at home I am normally stretched out in my recliner or on my sofa and my pain is just bad after eating but super tolerable aside from that. In my chair it is stronger all the time and when eating, and it lasts longer. Let me just say, it is hard to propel a manual chair and clutch your tummy simultaneously!

Do other people have issues with exercise or physical activity making your symptoms worse?

 

[JThorn676]

I actually work out a lot - around 6 times a week and I have been feeling really well since my surgery (have had a few tiny flare ups but nothing major!) so exercising doesn't seem to be making my symproms worse but everyone is different! I was working out a lot before my diagnosis and ended up in emergency exploritory surgery but I don't know if the exercising had anything to do with that!

I hope your GI is able to get you a diagnosis and under control! Good Luck to you!

 

[Keepingfaith]

I just wanted to welcome you to the forum!

Have you had a lot of weight loss with your flare? Maybe you aren't absorbing the Prednisone or are steroid refractory. Not too many people are but I am steroid refractory & only see symptom improvement when on IV steroids. People who have a lot of inflammation in the small intestine are usually steroid refractory & they simply just can't digest the pills. That could be something to discuss with the doctor. You should see some improvement though. You are on a 'high' dose. You usually have to work your way from the bottom up-milder drugs first-before trying other medications like Immunomodulators/biologics. You aren't alone! A lot of people don't have luck with the first medication they try. As far as steroids go- I absolutely hate the shakeyness/depression/mania/insomnia/mood swings. Terriable, terriable drug & I don't blame you for hating it!

I hope your GI can DX you soon. Not knowing *for sure* is the hardest part.
Take care!

 

[mnijihc]

I just pulled my knee closer to my chest and felt an immediate increase in pain. I wonder if the increase of pain from being in chair is related to a muscle contraction or something from being in that position. I can't remember the exact angle for my seating but I do have "dump" on my chair which means my bum sits lower than my knees and it isn't a perfect 90 degrees between my seat and my back. I wonder if I am putting extra pressure on my inflamed and swollen ilium when I do that, thus pain. That would make sense to me maybe!

It isn't like I can get up and run around and see if non-seated activity makes it worse too so I will have to theorize this one! I know I am quite sensitive to poking when the doctors press on my tummy.

 

[mnijihc]

KeepingFaith - Yes to the weight loss. So far 11lbs in 22 days. I am glad it slowed down a bit because at the start it was a pound a day. I am of average build and with the 11lbs so far I look "good". The day I was first diagnosed we thought it was my appendix but I went to my family doctor before going to the ER (just to make sure I wasn't about to waste my time in an ER) and the first thing she said to me was "you look skinny!".

My inflammation, which was visible on a CT without contrast, was in my terminal ilium. I know I am having issues with absorption and I suspect it has been for a while. I used to have chronically low potassium, including needing IV infusion once. No one ever knew why. No one seemed to care why either. As long as my kidneys were fine they let it go. My B12 and Iron are also low...right now my iron is 4, CRP is 91 and ESR is close to 60 I believe. If I am just not absorbing the pred enough to treat me, but enough to have horrid side-effects I will be angry! I hate this stuff.

I know that my CT also showed evidence of past inflammation, and current inflammation in my cecum.

Everyone is calling it crohn's already. All the doctors, including the GI in the ER. It fits perfectly. I also have constant mouth ulcers, a history of fissures, and skin "stuff" that is inexplicable. I have the joint pain too but that could and probably is also related to my CP. I am looking forward to meeting the new GI and getting the official "stamp" for the diagnosis. Not looking forward to the tests though....

I am SO lucky to have the BEST family doctor in the world right now. I have seen her 7 times in two weeks. She is so good with answering questions, listening, humanizing me and making every process be as easy as possible. I have been in the ER twice now but both times she sent me along with a letter from her, explaining what she saw and what we talked about and all relevant recent test results and information. She also wrote on it she was willing to consult and they were welcome to call her and she encouraged me to tell them to call her if I didn't feel okay with what was happening or what was going to happen. Honestly, without her right now I would be screwed!

She wouldn't take me off the pred after only 3 days though. I agreed to keep trying until the 6th. I see her again on the 3rd and if I need to I will see her before that to beg to be taking off of it. If I was getting benefit from it I would be way more willing to deal with the side effects. I will be good and just keep taking it until I am told I can stop....

In the mean time I will continue to eat my soup and juice and do what I have learned how to do to mitigate the pain.