Confused and fed up

By shell-t

1 min read

About 18 months ago I had the worst griping pains ever with constant trips to the toilet with bruising pains and fatigue the next day. Once I felt better, it kept happening every couple of months. In between these episodes I had urgent bowel movements.

I decided to visit my gp who requested stool test and blood stool test. It came back with 317 calprotectin and 59 CRP.
I was referred for a colonoscopy which was clear, apart from distal proctitis. My symptoms seem to be more like Crohn's and I am still suffering with lots of symptoms and I feel something has been missed.

Has anyone been told they have proctitis? What are your symptoms?

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Sahara Fleetwood-Beresford Moderator & Contributor
Hi <inline-mention user-id="2280669" username="shell-t"/> ! I did have proctitis, but only for a very short time as the whole of my colon was full of disease too, so that led to emergency surgery shortly after my diagnosis. I went on to have a Jpouch created to replace my rectum, which I kept getting pouchitis and cuffitis with. The symptoms of cuffitis were very similar to those of proctitis. The worst symptom was tenasmus - the feeling of urgently needing to go to the toilet when I didnt really need to. There was a constsnt dull ache, but then I would feel the spasms in my bottom on and off. - Sahara (team member)
crystalharper Community Admin
Shell.T, While I don't have a personal experience to share with you, I will say that if you're not satisfied with the answers you got, keep on pushing to get clarification. It is so important to seek a second opinion, a third opinion or even a fourth until you're comfortable with what your medical team is telling you. I did find a little bit of information on proctitis on our website if you're interested in reading more about it. Here's the link: <a href='https://inflammatoryboweldisease.net/types-of-ibd' target='_blank'>https://inflammatoryboweldisease.net/types-of-ibd/</a> I hope you get the answers you deserve. Please let us know if there's anything we can do to help in this process. Best, Crystal (Migraine.com team)
1. shell-t Member
 Thank you Sarah for your reply x sorry you have suffered so much hope your ok
thedancingcrohnie Moderator & Contributor
I have proctitis and was diagnosed with Crohn's. If you feel something has been missed always listen to your gut. Push for more tests. Maybe ask for a pill cam test? It will show if you have inflammation in your upper intestines which a colonoscopy can't show. Elizabeth (team member)
1. shell-t Member
 Hi Elizabeth Thank you for replying to me Was your proctitis diagnosed before or after your crohns was diagnosed I have read that proctitis is caused by inflammatory bowel disease so surely I must have something else with this. I have had suppositories fir two weeks now and although I am feeling better and pains are also better my urgent bowel movements are still there which is very distressing Thank you Michelle
2. thedancingcrohnie Moderator & Contributor
 Hi Michelle, No problem! That's what I'm here for. I got diagnosed with proctitis when I got diagnosed with Crohn's. I still deal with it to this day. Suppositories are a huge help. I started using coconut oil suppositories and found major relief with them. But yes, I still have urgency and it is quite a nuisance. I wish I could tell you something that works but I'm still figuring it out myself. I do find that when I am strict with my diet and stay away from grains, dairy and processed sugars, the inflammation definitely lessons. But I haven't felt "normal" in that area since my diagnosis to be honest. What suppositories are you on? Elizabeth (team member)