Just diagnosed with lots of questions

[belovednokie]

So, after almost a year and a half of suffering I was finally able to see a doctor. Of course the first doctor I seen automatically told me I have IBS, but she did do fecal testing and blood work to look for many things including bleeding and inflamation. Before I left her office I told her I wanted a colonoscopy, she was surprised and said I should for my test results. I insisted to have one so she scheduled me for a sigmoidoscopy. Of course my test results all came back normal, I wanted to cry, not because I wanted something to be wrong with me, but because I knew something was wrong and I felt I was going to be dismissed by doctors and spend another couple years with this pain.

I was very distraut and didnt even feel the need to do the procedure anymore, but I still did. At this time I had been sick with diarrhea, nausea, vomiting, and severe stomach pain, along with the proceedure prep, I was in hell. I had the procedure done and I got to take a look at my bowels. They found blood, mucus, inflammation, and ilcers in my rectum. Finally, Im not crazy, there is something there, but what exactly? The doctor took biopsies for testing and about a week later she called and said it was proctitis, I thought I would get medication to gix it and be on my way. Well I was set up for a consultation with a GI specialist, I was really confused as to what for.

being the investigator that I am, I did some research on proctitis, come to find out proctitis is not something you get for no reason. Proctitis happens for a couple reason, either radiation treatment, virus or infection, sometimes antibiotics can cause it, but last was IBD, which was something I had already believed I had. So next day I see the doctor and she lays it all on the table for me, she is almost sure it is crohns, she wouldnt give a diagnoses just in case it is Ulcerative Coilitis. She is sure that it is IBD, she started me on a 5-ASA oral and suppository.

Only after 5 days of use I see an improvement, I forgot what it felt like to not be in pain and sick everyday, its crazy. So happy that I have better days to look forward to, but I d I know that it may not always be that way.

Questions for my fellow Crohnies

have you ever heard of a doctor being able to feel bowel inflamation through your stomach?

If im on medication will the doctor still be able to see the disease when doing the colonoscopy? (Scheduled for Jan, 8, 14)

although the medication is working now, can it ever just stop working?

Is it possible that I can have proctitis and all the signs for the disease and they go in and find nothing?

I now there are no doctors here with definite answers, but I feel who better to ask my questions than those who know the disease first hand.

Thanks for listening everyone, stay strong.

 

[SarahBear]

I'm glad you're finally tracking down a diagnosis and are getting treated! :hug:

To answer your questions…

I'm not really sure about doctors "feeling inflammation." They definitely poke around for something. I think most likely, they're watching to see if it hurts you, which could indicate inflammation.

Whether or not they can see the disease during your next scope depends on how well the medication works. If it puts you completely into remission, they may not see it (although they will still see scar tissue if there is any). It's unlikely that you will go into a full remission by early January, but not impossible.

Yes, unfortunately the medication can stop working. However, it might also work indefinitely. There's really no way to tell. However, mesalamine is first-rung treatment - it's the most gentle option. If it does fail, you have options left and they're proven to be more effective than mesalamine, so I'd say your chances of finding another one to work are pretty good, if it does get to that point. I wouldn't worry about it.

I'm really not sure on the proctitis question - I'm not familiar with it myself. However, it is possible to have IBD symptoms and scopes find nothing. If this happens, further testing is needed, as Crohn's may be present elsewhere in the digestive tract. If this does happen, please don't lose hope after the first clear scope - just push for more testing (i.e., MRI, CT scan, endoscopy, pill cam).

:hug: I hope things go well for you!

 

[belovednokie]

Thanks for attempting to answer my questions, I had only asked about the doctor feeling the inflammation because she said she could. Yes, I was surprised to, so I was just wondering if anyone had ever heard of it before. I just learned about proctitis, but I have done a lot of reading on IBD, but I know things dont always work the way they are supposed to. I think im just feeling a little impatient, wanting to know things right away. Although I know it doesnt work that way.

 

[SarahBear]

Your impatience is absolutely understandable in the situation. A diagnosis can be such a relief, as it means you can finally be treated. Hopefully things will get sorted out for you soon. :hug:

 

[hbrekkaas]

To answer the first question - when I was diagnosed they could feel a mass just by gently pressing, which turned out to be a pretty major abscess. So some things can be felt by the doc.

And my surgeon told me that if you have lots of inflammation and something is going on they will be able to feel a harder/tense abdomen, not a soft one.