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Crohn's Disease Forum

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ok so I posted this in treatment, going to repost here just in case its a better place to :).

Help
Ok so I'm new, this is my first post. I am lost and need some advice. Last July I went to the ER with severe pain in my lower abdomen, it was so painful it felt like something was going to rupture. They ran some tests and did a CT and couldn't find anything. Gave me some pain medication and an antibiotic and sent me on my way. Soon after I began having very hard very formed BM that had white mucus on them. They were so hard that they caused me pain and bleeding. I set up an appointment with a GI doc who did a KUB dray and set up a colonoscopy after. He states he believed the pain was from severe constipation. The day or so before the scope, his nurse called and stated that I was 'backed up' and to go home and take a bottle of mag citrate. I did and of course it did its thing. A few days later I had my scope. Afterwards he told me that the scope showed inflammation in the lower. Intestine and anus area. He placed me on hydrcortisone Supp. They however did nit help. I was having D now and was losing weight. (Which keep in mind I have never had an issue before now and I was 23) I went back to him and did a small bowel series and sent out the promethias blood labs. The blood came back negative for IBD and the series was inconclusive stating that it didn't show anything and to follow up with a scope (that I already had done). So he put me on an 8 week course of budesonide 9mg everyday. Everything went away. I had no problems. I finished my 8 week course and the mucus came back with my bowel movements
, no blood ( I have never had bloody stools and have yet to have any), and no D. So I went to see him, he did another KUB xray and placed me back on budesonide 9mg everyday. All my labs are perfect, my xray was fine. He says that I am going to stay on budesonide, not as a flare up treatment but as a maintenance drug forever. So here I am taking 9mg of a steroids everyday, I only have one bowel movement a day ( formed but soft) and it still has the inflammation mucus on it. I only feel crampy like once a week and its not severe at all. I can eat anything without having increased pain or D ( except Mexican but who can ) . I am just confused. He knows of the continued mucus and doesn't seem interested. He States that my scope showed inflammation consistent with his visuilization of crohns , but the bowel series xray AND the blood work id negative. Has anyone had this problem? I don't want to be on lifetime steroids for something I don't have to be.


I'm just not sure if this is right it seems like my problem is more constipation and inflammation then any D and bloody stools. Is it still Crohns? or something else? Should I get a second opinion? or trust my doc?
 
I forgot to mention that I never have any cramps that make me run to the bathroom ever, beside when I had my scope of course
 
Hello and :welcome: One thing is we are all different and some chronies actually do get constipation instead of diarrhoea. I have never had blood in my poop either. All my tests have always been conclusive and 'match' but there are many who have had the same issues as you have. I also don't think that steroids should be considered as the long term treatment plan without any effort being put into trying something a bit safer first. Has your doc even got you on a calcium supplement? Whilst budesonide is better than prednisone on the system I still think you sould be on something to help protect the bones. Is it possibly worth going for a second opinion about this? How do you feel about the doc you have been seeing currently?
 
When I was younger like 10 or so I was tested for Crohns as its in the family. However, nothing was found. At about 30yo I went to hospital with severe abdominal pain. Staid the night on morphine. Dr's found nothing and only questioned a skin rash I had developed. I have always had loose stools as far as I can remember so this was kind of natural to me. no bloods. in my late 30's i had to take ambulance in to hospital due to severe "pumping" abominal pain. surgeons and dr's discussed the pains and thought it was appendicitis, which they removed. During surgery apparently the surgeons noticed crohns on the intestine. no other dr at the same hospital was able to confirm this diagnosis after with blood tests, colonoscopy, endoscopy, xrays and so on, but yet I was given steroids to take 3-9mg/day. Since I was not feeling bad just after i was given an appointment once every 6months which turned into once every year. My local GP referred me to another hospital. After 6 months at the new hospital I am now on remicade and gosh am i happy i changed hospital. i now also know i have osteoporosis in my spine and beginning in my hips among other stuff. i never associated the pain and other stuff with crohns as this pretty much was normal to me.

In short: my recommendation would be, if you have the chance, to ask for another doctor or even another hospital to have a look at your file.

PS After surgery I found an article on the internet discussing crohns behaving as fake appendicitis. Cant remember where or how I found it...
 
Hi and welcome to the forum! I was a bit surprised at your post saying that your GI plans to have you on steroids forever! My understanding is that long term steroid use is pretty detrimental, although I couldn't give you any specifics. My GI lets me self-medicate when I need to (during a flare, and only for a few days - 10 at most). Any longer periods he wants to monitor very very closely.

When I was first diagnosed I started on a high dose of pred (50mg, not sure how that compares with Budesonide) and waited till it worked and then weaned off. But I do remember him saying that he didn't want me on it for more than 6 months.

If I was you, I would seek at least a second, if not third, opinion, until you find someone you're comfortable with. Crohn's can be tricky to find, but if the surgeons saw it, and if the meds help, then I'd say you most likely have it. I wouldn't be comfortable with steroids for life though - too many side effects for me!

Best of luck, and keep us updated!
 
Thank you all so much for your help! I am surely getting a second opinion now. Not only am I worried about the steroids but he hasn't even mentioned giving me a vitamin supplement or checking my b12! I'm just not satisfied and I'm left with more questions then answers
 
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