Hi...welcome to the forum!

What is the location extent of your UC? If you dont have your pathology results of the biopsies, get them and share if you're Ok with that.

You absolutely need to be on rectal retention enemas...REQUEST them from your GI. I suggest the Salofalk 4g asap...oral mesalamine does not treat the rectum (where UC starts).

Keep us updated.

q

Hello Q! I still don’t have my biopsy results with me I will review them with my doctor on the 3rd of November, I think I could ask for them to be sent to me but I feel that having the results could cause me more stress and anxiety so I’ve decided to wait till my appointment, and I will definitely ask for the enemas!


Hi CC! My stool consistency is been improving, but I was (AM) really scared of having lost my weekly improvements. Since the day I had the diarrhea I’ve been going a bit more to the bathroom like 2-4 BM per day, which is fine since I don’t have urgency, the thing that is bothering me is the mucus, still have it (more since the diarrhea episode, but is subsiding I think) and still sometimes I see a bit of blood, but is not an everyday thing. Really hope I’m on my way to remission 🙏🏻

Post Edited (BonLS) : 10/8/2023 9:18:51 PM (GMT-8)

BonLS...are you in Canada, UK or Australia? It makes a difference regarding meds and dosages available.

My advice to you is get over the word remission and it being your only goal. Stop using every improvement and change in symptoms as a failure. Get REAL SMART about what you have, what your symptoms are, and what they mean. Do some research...remember that not all sites have true and factual information. Ask lots of questions...create that list and be prepared in a proactive role regarding your dr appts. Use this forum for support...most of us deal on the reality scale, but not to say fear and anxiety isn't part of the frustrations.

Looking forward to the outcome of your appt.
Hang tough...
q

I totally feel you. My UC symptoms depend heavily on my anxiety/stress levels unfortunately. Have you noticed any increased discomfort after eating certain types of foods? I noticed you mention you eat sandwiches, and for me personally I realized I was getting more symptoms whenever I ate gluten. I hope it's not your case but it's a good idea to keep a food diary to help you identify any foods that could trigger your symptoms even more.

Hi BonLS...thanks for the clarification re Portugal and that Salofalk is used there. The issues in your hand can be your neck, your shoulder, your elbow or carpal tunnel...i have those issues continually. I do suggest you get B vitamins checked anyway. Please make sure your meals are balanced anyway...and taking a good multivitamin covers some bases with that.

q

Food isn't a trigger for your UC...but discomfort from the action of some foods in the digestive tract can cause gas and sometimes spasming. Can be confusing. Usually foods like that take about 5ish hours for me to feel the effects.
When flaring and where inflammation is and is limited to will change the signals in the gastro tract.
If you have lots of discomfort, an antispasmodic will help.

You do understand that UC starts at the rectum? So depending on how high it is, the oral meds would have probably calmed. Hence the strong suggestion of retention enemas (suppositories are not enough in a flare). That will deal with the lower end. The butt rules the game in UC...so if it's not dealt with, many will see the oral mesalamine as a failure. Not so, it's because topical treatment isn't offering full coverage of meds.

I've used the same meds for nearly 35 years. I had lots of ups and downs learning how to deal with symptoms earlier and earlier during a flare. I had an amazing doctor to start and now have another amazing one who is quite happy with the longtime results and the commitment of med usage. If that's what you can use for your lifetime, then why not?

Always ask questions...it's how we learn. You'll get varying answers based on experiences and knowledge.
But pay attention to what youre experiencing and learn the why...it will lessen your anxiety as you move forward. Plus your experience is how you learn...unfortunately...and that includes flaring and healing.

q

Hi Bon..I wasnt meaning the granules weren't a and to be on the oral mesalamine (in my perspective). To clarify...there are many GIs that seem to discourage patients from rectal meds, and some patients cringe at using rectal meds. Without full coverage, it can be perceived that oral mesalamine is a failure because symptoms persist.

Re bms upon awakening and getting up...it's pretty typical for that and UC. I've kept that schedule and eat and take fibre to encourage softer stool. More convenient to have it all done early 😊

Aniety with being newly diagnosed is fairly normal. Feels crappy, but knowledge of what's happening, and you having a good support network, helps a lot. Learning curve is continual, unfortunately. On the extreme bright side...you aren't sensitive to mesalamine, and the response of improvement is noted. I got worse before I saw improvement, because I was only on the oral for the first month before my c-scope (and then given retention enemas), but I was up to 20x bloody diarrhea by that point and had lost 17 lbs. My GI's most spoken word was "patience"...my anxiety was definitely full-blown, but I'm eternally grateful for his care and explanations of what all the symptoms meant and how my UC was responding, which certainly helped to not feel isolated. No internet then...just library books.

Looking forward to the outcome of your appt.

q

Josh...you aren't disagreeing...just not fully explaining the why. While suppositories are definitely an option, higher dosage and better coverage is the key to treatment. Suppositories are better used for adjunct to the enemas, tapering the enemas, maintenance , or inflammation that is mild and limited lower in the rectum and treated up to 3x daily.
Basically, dosage consideration first. I do base it on info from my doc and my own and others' experiences.

q

Hi everyone!
Just got back from my visit with the gastroenterologist. I really liked her and she answered my one million questions hahaha she’s also the head of gastro at that hospital!
We checked out the colonoscopy and biopsy. The colonoscopy only made it up to the sigmoid colon because of some funky loop. From what I understood, the colonoscope itself got caught in a curve, and the doctor decided not to proceed further to avoid any potential complications since I had ulcers. So, I don't really know the full extent of my UC, the meds probably have healed further up but I’ll have to wait for the next colonoscopy for that.
I told her I've been dealing with a lot of gas lately, and my BMs are down to 1-2 per day (morning with some urgency) but they're still not quite on point. She said as long as it's not watery, it's a step in the right direction.
Since I'm still seeing occasional blood, she laid out two options:

Plan A: Keep on with the 3g of Salofalk + another dose of 1,5g and now I've got the enemas in the mix too.

Plan B: If, after 15 days of enemas, I continue to see blood, I should stop the enemas and start taking "Coramen," a which is a corticosteroid that, according to the doctor, specifically targets the inflammation in the intestine. I should take it for one month without the need for tapering off the medication after.
I’ll have my calprotectin check this month and again in January along with other clinical analysis. The next time I’ll see her will be in February.

Well, here goes nothing!

Post Edited (BonLS) : 11/3/2023 6:06:33 AM (GMT-8)

Hey Q!
Yes I did get a copy of the biopsy and images of the colonoscopy:

“Macroscopic Description:
Six brown, friable fragments measuring 1 to 2mm.

Diagnosis
Fibrin fragments, inflammatory exudate, granulation tissue at the base of the ulcer, fragments of colonic mucosa from the margin with marked inflammatory activity, epithelial permeation by polymorphonuclear cells, some crypt abscess formation, and reactive cytoarchitectural changes, without dysplasia.

CMV (Cytomegalovirus) immunohistochemistry (IHC) assay: Negative.

The morphological findings correspond to lesions of IBD of the Ulcerative Colitis type.”


I also wonder what about the sigmoid made it that they wouldn’t go forward… I asked and it wasn’t anything “bad” with my colon, just that in the moment the person that did the colonoscopy decided it to stop to prevent any other issues…

about the enemas, they are Salofalk 4g. I will give it time to feel if they are working 100%, because I see that like you, lots of other people don’t necessarily se results in 15 days.

The anxiety is more controlled I think, I had an “accident” last weak which made me really sad, but I’m really trying to face this and be strong. Started seeing a new therapist that is part of the Portuguese Association of Inflammatory Bowel Disease, I felt I needed someone who deals with these type of diseases.

Post Edited (BonLS) : 11/5/2023 2:02:20 AM (GMT-8)

Hey! I started to feel something was wrong in June, but my initial stool tests came back negative for parasites, bacteria, etc and the calprotectin wasn’t high so it wasn’t until September that I got a conclusive diagnosis (when my symptoms had gotten worse and calprotectin was higher at this point). about the architectural changes, it is normal to have them with an UC diagnosis, right?
This therapist has more knowledge with IBD related issues, even like you mentioned, in terms of meds (he won’t prescribe or change my medication, but he’s aware of how they work and side effects, ultimately how all this might I mpact emotionally). Since he’s part of the association, he also has regular contact with GIs and nutritionists (that can give guidance to those with crohns and UC flares).
Will keep you updated on how I’m doing with the enemas! (I’m only 2 days in, but for now I can keep them all night and don’t feel any major discomfort 🙏🏻)

Hi! Not yet, but is something that my doctor will schedule on my next appt in February.