I need some help from my fellow IBD patients. I had a phone call from one of the IBD nurses at GSTT explaining that they wanted to start me on Vedolizumab. The last time I was in this situation was August 2009. I was being given the choice – Infliximab (Remicade) as a “final, last chance, before surgery”. A real no brainer and no need for a long list of questions before making the decision. Who would choose the knife over a drug? (That would make a good subject for a new post)
Now, nearly a decade later, I’m being offered another MAB. (I won’t go into the reasons why but if you are interested this link opens a post, explaining the issue and what it’s like to have a capsule endoscopy, in a new tab – https://www.wrestlingtheoctopus.com/fantastic-voyage/).
I won’t make any decision until I have spoken to my gastro consultant – appointment set for 15th April. Ahead of my meeting I need to get a list of questions together, usually a fairly simple task, but this time it is uncharted territory…..and that’s where I could do with your help. Have you had to make this decision? What questions did you ask/wish you had asked?
Here’s my latest list (26th March). Are there any glaring omissions? I’ve split them into categories :
- What did the nine phials of blood taken recently show?
- What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
- Would it account for pain around midriff? (Could be the hernia that the upper GI surgeon identified a few weeks ago, or maybe adhesions or scar tissue from laparotomy)
- Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
- Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
- It has been 6 months between having the capsule endoscopy mid-November and the appointment.
- The above suggests that there is no urgency to start on treatment. Is this right?
- My QOL is good apart from an ache on my right side which the Upper GI surgeon has diagnosed as a post-operative hernia at the site of my ileostomy
- Surgeon does not want to carry out cholecystectomy or even hernia repair due to varices growing around gallbladder and elsewhere within abdomen. This suggests that I should try and avoid any colorectal surgery at all costs.
- What was the gist of the discussion that resulted in proposing Vedo?
- How will Vedo help me now? …and in the long term?
- Are there any side effects I need to know about? Are any of these relevant to my other conditions? (BAM, PVT, splenomegaly, thrombocytopenia, gallstones)
- Ongoing monitoring regime? Frequency?
- How good a measure would calprotectin be for progress in treating small bowel Crohn’s?
- Does the efficacy of Vedo differ as one gets older? Do the side effects change?
- Reason for needing chest x-ray
- Haematology suggesting another bone marrow biopsy. Do we need to wait for result before making decision?
- What if I decide not to go back onto Crohn’s medication at present?
- Side effects of Vedolizumab.
- Long term commitment to an infused drug
- Trips to London (I love London so you would think a few more trips would be welcome but as I gel older will I really be so keen?)
- Is there the opportunity to have infusions at a local hospital?
- What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?