Some confusion

[belovednokie]

Hello all, I began having problems almost 2 years ago, just was able to see a doctor last year around November. Of course I was told it was IBS, which is fine if thats what it really was, but I knew the amount of pain and sickness I was experiencing was not IBS. All my results were normal, so I pushed for further tests. I had a sigmoidoscopy which came back positive for proctitis. I then seen a GI specialists who concluded after telling her all my symptoms and proctitis that it was crohns. I started on 4 tabs of mesalamine and canasa supositories, soonafter 40 mg of steroids a day.

All symptoms stopped except for the pain in my lower left abdomain, I had a colonoscopy almost 2 months later and everything was fine, even the proctitis was gone. I am still taking the mesalamine 4 tabs daily and was feeling pretty good up untill about 2 or 3 weeks ago. I began to have urgency pretty bad off and on, nausea, blood when I wipe, and low grade pains. Today I went to the bathroom and had mucus like spaghetti bm, a lot. Its not worms I checked, but it does worry me with everything else going on.

so the problem is, I am still not sure if I even have crohns seeing that the GI didnt see anything, I am also wondering is the crohns affecting an area that cant be seen in a colonoscopy. Last what is this spaghetti like mucus coming out of me.

any help or personal experiences would help, and yes I have contacted my doctor and waiting for her to email me back.

 

[durwardian]

Proctitis does make those symptoms, and does not mean Crohn's.
The mucous is normal as a reaction to the infection and swelling. Causes can vary between antibiotic sensitivity, to trauma, to infectious diseases. Hope the docs have ruled out that you may need something simple like probiotics?
Have you ever tried cortisone suppositories? Did that help?

 

[belovednokie]

Thanks for the reply, they did rule out infections, also the other things that cause proctitis including viruses. The GI says that proctitis would not cause the upper abdominal pain, and severe vomitting which all stopped a couple of weeks after I started the mesalamine. There was also several othe symptoms I was having that were severe that she says were not symptoms of proctitis. The GI said the reason she didnt see anything in my colonoscopy was because the medication and steriods were working. I just assumed it wasnt bad enough to leave any scaring or permanent damage, though I coildnt imagine it being any worse. I was so weak, and dehydrated, sick and in severe pain I couldnt leave the house let alone my bed.

I do believe that along with the proctitis there may be something other then crohns, but then why would the medication relieve me from all the serious problems I was having? I didnt even notice the rectal pain untill I started the meds and all other symptoms were gone. The dic said the other symptoms were so bad that they masked symptoms if the proctitis. I just feel like things are not clear yet.

 

[durwardian]

The other symptoms do sound like Crohn's. It may not show up right away. Keep up those medications if they work for you. The flare ups will come and go

 

[belovednokie]

Thanks for the advice, and sorry for the misspelling, I am using my tablet and my fingers are hitting the wrong letters.

one more question, if I am having a flare does that mean the medication is not working anymore? Although I am having symptoms it is nothing compared to when it first started 2 years ago. Also have you heard of proctitis caused by crohns reoccurring?

 

[durwardian]

Yes, it is a never ending disease with flares that don't always respond to medications. The medications may be working, so it could be much worse without them. Flares are unpredictable.

 

[durwardian]

Proctitis is mainly rectal, so yes, it will aggravate the crap out of that condition. Probably caused by the violent bathroom visits where you feel like glass is coming out in sharp pieces

 

[durwardian]

Medications are still working in my opinion, just a flare up where not much helps.

 

[belovednokie]

It is so funny that you mention glass, I told my doc that at times I feel like Im giving birth to a ball of hot glass. You have really made me feel a lot better about all of this, I really appreciate it. THANKS