2yrs after surgery and CD returns with aggression

[Gavin Mc]

3 months ago at my routine check-up when I declared I wasn’t feeling to great it was suggested that I should have a white blood cell scan. This method of scan is far less problematic for SBS patients than the usual MRI as there is no requirement to drink vast quantities of prep.

Today I returned for the results to be advised that of the remaining 94cm of my bowel I had 57cm of inflammation caused by the aggressive return of CD.

Options I have been given are methotrexate or Humira which at best will slow down the CD.

Has anyone else found themselves in this situation, what option did you take and why?

Also taking a long term view of my situation when undoubtedly will need more surgery.

• What is quality of life like with even less/or no bowel
• What options will that leave me, TPN / Colonoscopy?
• Quality of Life and even Life expectancy?

I realise I am jumping the gun a little, but I need to understand what the future is to allow me to make informed choices now.

Thanks
Gavin

 

[nogutsnoglory]

I am sorry I don't know the answers to these questions on short bowel syndrome but id imagine quality of life continues to diminish with increased resection. You want to try to preserve as much bowel as possible. I really feel for your situation and hope someone with experience with SBS can give more concrete answers or suggestions. I would definitely recommend getting options from multiple surgeons and doctors before proceeding with treatment or an operation if possible.

 

[Gavin Mc]

Cheers NGNG, always appreciate your replies, and your recommendation is certainly the root I will be taking. Information is power, and allows us patients to make an informed choice on our health regime

 

[araceli]

Hi Gavin Mc. Sorry I don't have any answers for you, just want to send you support. May be if you post again in another part of the forum, somebody who has experience with this will answer your questions. Best wishes to you.