Update

Hey,

So after speaking to the consultant a few weeks ago, he recommended going back in the foam enema for 4 weeks at a time to ease the symptoms, until I see the gastro team in January.

I asked if it’s possible the biopsies wouldn’t be accurate and may miss collitis as I wasn’t currently flaring and he was adamant this wasn’t an option

I have stayed in the Budenofalk for an extra week than recommended. Sadly I don’t think it’s helping me in the way it was before. I have a lot of mucus when I have a bow movement, even more so than I did previously and I am still experiencing blood. From experience in the foam enemas, is this normal for 5 weeks of treatment?

I have also had an appiointment through for a few weeks time to go and have all the muscles around my rectum tested to see their strength. Not sure on the logic in this with the procitis

He has also advised I be booked in for a sigmoidoscopy in Jan to look at the lower inflammation again as it will be 6 months since my colonoscopy.
I said to him should I be off of meds before this so the inflammation is present this time and he said yes as when I had my colonoscopy the inflammation was very little.

Still an ongoing problem, I don’t really know what to believe anymore.

Hi Jess

If you have symptoms then you are currently flaring i.e. there is inflammation somewhere.

If the budenofalk doesn't make you symptom-free then you need (eventually) stronger medication.

While i can understand the logic that you want the doctors to see how bad your inflammation would be if you were not taking budenofalk, I'm not sure if I would personally want to inflict that level of suffering on myself in order to prove a point (and especially when you can't predict how badly your body would react to that).

My thoughts are that ALL of us deserve to be symptom free and it's not acceptable to let patients suffer indefinitely just because their symptoms are "mild". If you are having symptoms and they are impacting your quality of life then you deserve to have the necessary treatment to fix it. Also be aware that when we've been flaring for a long time we forget what "normal " is and can tolerate what is actually a low quality of life without realising that things can and should be better.

Unfortunately with this disease we often have to be our own advocates and push to get the right (level of) treatment.

Take care.

Thank you for your replies everyone.

I have been on the Budenofalk foam for 6 weeks now - even though the consultant recommended 4 week stints, my symptoms have started to return even whilst being on the meds. Blood and mucus in stool, blood seems to be getting worse, and the constant feeling of needing to go. Haven’t felt like this for months.

I have an appointment next week with the pelvic floor team as they are found to test the muscles in my rectum to see if this is the reason I’m feeling the need to go all the time - completely different problem as I know the procitis is being caused by something else but at least tests are being done.

My current problem is o just don’t know who to seek help from. I’ve been put on the wait list for a sigmoidoscopy early new year so they can do biopsies again - I’m also booked in to see the gastro team in Jan.
Other than that I’m just really not sure who to turn to. All the consultant keeps saying on the phone is they are unsure what’s causing the inflammation and to do 4 weeks stints of the medication.

At a loss now my symptoms are getting worse and I’m on the steroid foam

Unfortunately many trips to the a&e hasn’t really helped me, they all just say you need a colonoscopy etc, when I explain I’ve had one they refer me to the surgeons. Who then say I need to see my consultant.

Going to try and get in touch again to see if I can go on different meds or I can have things pushed forward.

So sorry you’re on a seemingly-endless loop of waiting and referrals. This is probably the most frustrating part of this disease—suffering and feeling bad and yet no one seems to be in a hurry to help you. It’s hard being a number on a wall.

Call and tell them your symptoms are escalating even on the meds you were given and you are really suffering. Let us know how it goes!

I agree with poopydoop. Also, I'm sorry you're dealing with this. Have you asked about trying other medications? January is a long time to wait.