Oral KPV has given me hope I’ll
Post levels in 4 weeks after testing I’ve been on it 36 days and I’m feeling the best I have in years.
detailed UC / GI Timeline
November 9, 2025 — First Blood in Stool
• First bowel movement containing visible blood.
• Bleeding subsequently became a daily occurrence.
• Initially unclear whether the bleeding was from hemorrhoids, inflammatory bowel disease, or another cause.
• Symptoms continued while waiting to be evaluated.
November–December 2025 — Persistent Bleeding and Worsening Symptoms
• Blood was present with essentially every bowel movement.
• Developed increasing fatigue, weakness, urgency, mucus, and abdominal cramping.
• Appetite decreased significantly.
• Weight dropped substantially over the following months.
• Approximately six weeks after the bleeding began, I was finally evaluated by a physician.
• Hemorrhoids were initially considered, but a colonoscopy was recommended because of the persistent bleeding.
January 23, 2026 — Colonoscopy
• Because I was uninsured at the time, I used an uninsured-patient colonoscopy program.
• Colonoscopy performed January 23.
• I had continued bleeding essentially every day from the initial episode through the colonoscopy.
• Colonoscopy findings:
• Inflammation and granularity in the sigmoid/left colon.
• Findings were compatible with ulcerative colitis.
• The remainder of the examined colon appeared normal.
• Biopsies were obtained.
• No polyps were identified.
• Subsequent pathology showed inflammatory changes compatible with inflammatory bowel disease, including focal active colitis and architectural distortion.
• No dysplasia, malignancy, or granulomas were identified.
February 2026 — Insurance and GI Referral
• Health insurance became active.
• Initial GI appointment availability was several months away.
• After some difficulty obtaining a GI appointment, I was eventually accepted as a patient by another physician in the same GI practice.
• The GI evaluation was intended to determine whether the condition was ulcerative colitis or Crohn’s disease.
Initial GI Evaluation — UC vs. Crohn’s
Initial inflammatory testing showed significant intestinal inflammation:
• hs-CRP: 3.2
• Fecal calprotectin: 1,760
At this point, the diagnosis was not considered completely definitive between UC and Crohn’s disease.
Additional testing was performed, including:
• IBD-related/genetic testing
• TB testing
• Additional blood work
Based on the colonoscopy, pathology, laboratory testing, and overall clinical picture, the GI ultimately concluded that the condition was most consistent with left-sided ulcerative colitis, primarily involving the sigmoid/left colon.
Early 2026 — Severe Symptoms and Weight Loss
During this period, symptoms were severe.
• Approximately 50 pounds of weight had been lost from the initial period of illness.
• Significant weakness and fatigue.
• Eating was difficult and substantially reduced.
• Normal daily activities became difficult.
• Rectal bleeding remained persistent.
Initial Treatment — Budesonide
A 90-day budesonide taper was started.
The taper consisted of:
• 9 mg daily for approximately 30 days
• 6 mg daily for approximately 30 days
• 3 mg daily for approximately 30 days
The initial response was limited.
Approximately 30 Days on 9 mg Budesonide
After roughly one month at 9 mg:
• Bleeding was still occurring with essentially every bowel movement.
• Energy improved somewhat.
• Overall weakness remained significant.
• There was no clear resolution of the bleeding.
During this period, I researched the specific budesonide formulation I was taking and learned that there are different formulations with different release characteristics.
I became concerned that the formulation I was taking was not specifically designed for optimal delivery throughout the colon for ulcerative colitis.
Discussion With GI Office About Budesonide Formulation
I contacted the GI office and discussed the difference between budesonide formulations.
I specifically raised the distinction between:
• The budesonide formulation I was taking, which is commonly associated with treatment of Crohn’s disease and has a more proximal release profile.
• The MMX formulation, which is specifically designed for extended delivery throughout the colon and is used for ulcerative colitis.
The PA discussed the issue with the physician.
Corticosteroid Enema Attempt
Instead of changing to another oral budesonide formulation, the physician recommended a corticosteroid enema.
I agreed to try it because I was unfamiliar with what the treatment involved.
After obtaining the medication, I attempted the enema once but was unable to administer it successfully.
Because of that difficulty, rectal steroid treatment was not pursued further.
Budesonide 9 mg → 6 mg
The budesonide taper continued.
• Dose decreased from 9 mg to 6 mg.
• There was not a dramatic improvement in the bleeding.
• Bleeding continued with essentially every bowel movement.
• I also became increasingly aware of mood/anxiety and other effects associated with the steroid taper.
Budesonide 6 mg → 3 mg
The dose was subsequently reduced from 6 mg to 3 mg.
The transition to the lower dose was particularly difficult.
• Significant withdrawal-type symptoms occurred.
• I experienced intense physical and psychological discomfort.
• The steroid taper became one of the most difficult parts of the treatment experience.
Importantly, despite completing most of the taper, the underlying bleeding had still not been adequately controlled.
Approximately 90-Day GI Follow-Up
Approximately one week before finishing the 90-day budesonide course, I had a follow-up appointment with the GI.
At that point:
• Rectal bleeding was still occurring.
• Symptoms had not gone into sustained remission.
• An additional approximately 15 pounds had been lost.
Weight progression was approximately:
• November: ~245 lb
• May: ~205 lb
• September: ~198 lb
The physician recommended increasing budesonide back to 6 mg.
I declined because:
1. The medication had not stopped the bleeding.
2. I had significant symptoms during the steroid taper.
3. I was concerned about remaining on corticosteroids without clear clinical benefit.
4. I remained concerned about whether the formulation was appropriate for the location of my disease.
Discussion of Alternative Medications
We discussed moving away from corticosteroids and determining what longer-term medication options would be covered by insurance.
The physician mentioned:
• Rinvoq
• Tremfya
Both were showing coverage through my insurance at approximately $250/month based on the information available at the time.
I was hesitant to begin these medications because of concerns regarding:
• Potential risks and side effects
• Long-term treatment
• Immunosuppression
• The decision to move to advanced therapy before trying other options
Mesalamine
After further discussion and self advocation I was prescribed mesalamine even though he said it won’t work.
The plan was:
• Begin mesalamine.
• Continue treatment for approximately eight weeks.
• Repeat laboratory testing and reassess the response.
• Use the results and symptoms to determine the next treatment step.
A subsequent CRP was ordered and collected 9-3
• CRP: 9.2
Current Treatment Decision
Despite being prescribed mesalamine, I am currently not taking it.
Instead, I began taking oral KPV:
• 500 mcg in the morning
• 500 mcg at night
• Total: 1,000 mcg/day
At the time of this timeline, I am approximately 36 days into KPV treatment. No more cramps, blood and using the bathroom 1-2 times a day, it’s unbelievable
Current Plan
The current intention is to continue observing the response over the planned treatment period and reassess based on:
• Frequency of bowel movements
• Stool consistency
• Blood
• Mucus
• Urgency
• Abdominal symptoms
• Energy/strength
• Weight
• CRP
• Fecal calprotectin and other inflammatory markers as appropriate
If symptoms and inflammatory markers do not improve adequately, the next major treatment decision will likely involve reconsidering conventional UC therapy, including the previously discussed advanced therapies/biologics. But that’s a life sentence so what do I have to lose