Seeking Insights: Mum's 30+ Year Crohn's Journey, Post-Surgery & Multiple Treatment Failures

Hello everyone, I'm hoping to share my mother's story to connect with others who might have similar experiences or insights. She has been living with severe Crohn's disease for well over 30 years, and it has been a challenging road.

Early Diagnosis and Major Surgery: My mum was diagnosed with Crohn's decades ago. The disease was extensive and aggressive, leading to a significant surgical intervention in the 1990s where most of her large bowel had to be removed. The inflammation she currently battles is located in the remaining section of her large bowel, towards the rectum.

Long and Difficult Treatment Path: Her treatment history has been a series of trials, with periods of relief often followed by treatments losing effectiveness or causing complications:

Mercaptopurine: For about 15 years, Mercaptopurine was a cornerstone of her treatment and seemed to control her symptoms reasonably well. However, it eventually stopped working, and she experienced a return of significant symptoms, including debilitating sickness, a severe lack of appetite, and very low energy levels.

Steroid Enemas (Topical): After Mercaptopurine, topical steroid enemas were introduced. These also provided a period of control and managed her symptoms for a while. Unfortunately, like the Mercaptopurine, their effectiveness waned over time, and the familiar distressing symptoms began to reappear.

Biologic Therapies: When biologics became available, they seemed like a promising next step. However, this has been particularly complicated for Mum.

She has tried several different types of biologics, including Humira.
A significant complicating factor is that she also suffers from COPD. This has limited her options, as some biologics can cause or exacerbate chest issues, which she did experience with some of the initial biologics they tried.

The most recent biologic therapy she was on was also recently stopped.
Recent Investigations and Concerns: Recently, Mum underwent a "double camera" endoscopy (to check her stomach and bowel). The results indicated that her stomach was apparently fine (though some bile was noted), and the bowel investigation showed what was described as "slight" or "mild" inflammation at the rectum end.
However, a key concern for us as a family is that prior to this procedure, Mum had put herself back on a steroid enema (Predfoam) for a few days because she was feeling unwell. We are worried that this may have temporarily reduced the visible inflammation, leading to the "mild" assessment. This is particularly concerning because the level of illness and suffering she experiences when her Crohn's is active seems more significant than what "mild" inflammation might suggest.

Current Situation and Hope for New Treatment: As of today her doctor has prescribed Budesonide tablets. We are hopeful this new approach will bring her some relief. When her Crohn's is not well-managed, it has a profound impact on her quality of life, causing a great deal of illness and distress. Though he prescribed 3mg once per day, and I believe 9mg per day is the typical starting point?

Seeking Shared Experiences: I'm sharing this to see if others have navigated similar paths:

Managing Crohn's long-term after extensive bowel surgery.
Experiences with treatments like Mercaptopurine or topical steroids losing effectiveness.

The challenges of finding suitable biologic therapies, especially when dealing with other significant health conditions like COPD that can be affected by side effects.

Any insights into how recent use of topical steroids (like enemas) might affect the findings of endoscopies, and how to ensure the true extent of inflammation is understood.
Experiences with Budesonide in similar complex cases.

Thank you for taking the time to read about my mum's journey. Any experiences or advice you might be able to share would be deeply appreciated.