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If you could go back?


Sun, September 29, 2019 3:27 PM

Hi I'm recently diagnosed with crohn's in my small bowel. I'll tell my story later which is a pretty crazy one. I have one question to all those who have Crohn's in their small bowel and went through the whole medication process and then decided on bowel removal. If you can go back and just go with the surgery first and not taking in the medication would you do that? Thanks for all your answers our thoughts.

FPO Jaime143
Joined Sep 29, 2019

Thu, November 28, 2019 7:54 PM

Reply posted for Jaime143.


For me ...I’d respond “no” to this question.
Diagnosed with Crohns 2000, meds for many years (incl frequent courses of steroids, and now I have Ostepenia), and in 2012 I eventually needed a surgery (a scope couldn’t get through due to a stricture, and no amount of medication could reverse that). 
I consider surgery to be the last resort. Having sections of the colon removed can lead to secondary impacts, such as Short Bowel Syndrome. I certainly want to do everything possible to get into remission and preserve as much bowel as possible.

If I could go back I would want to go back to 2000 and advise myself about what to do over the next 12yrs. By the time it was 2012 the damage had been done and there were no other options.  Advice I would give myself:

-in the event of mild symptoms ....don’t ignore ...it’s important to try reduce the inflammation asap so that it’s not adding to cumulative irreversible effects (ie stricture, that may require surgery later)

-stay on-track with self-care, as this helps to keep in remission.  (Id have periods in life where I’d feel so well I could pretty much forget about the Crohns ...would live similarly to my peers and then get sick again. I’ve realised alcohol, smoking, coffee, stress, or lack of sleep have been the worst on me, though by the time I really realised and acknowledged it was too late (ie another flare-up). 

-given I now have Osteopenia (due to steroid use) I wish I could have explored EEN as an alternative, as a means to get into remission.  Also ...I wish I took Calcium tablets every time I had a course of Steroids.

-or at times when I couldnt eat much and was experiencing malabsorption... I’d encourage to add-in hospital-grade meal replacement drinks, (such as Sustagen, Ensure, iSustain etc) to try keep my weight stable and help boost my absorption of nutrients.

-I also wish I knew to take Vitamin D all the time, as there is now clear research that links it with IBD. My understanding is that being low in Vitamin D makes more likely to have IBD flare.

hope you are feeling better soon xxx

FPO Yvonne111
Joined Nov 25, 2019

Wed, November 20, 2019 8:37 PM

Reply posted for Jaime143.

Hello I'm just wondering if anyone answered this post. I think it's a brilliant question but I can't find the thread.

FPO Sprout
Joined Nov 19, 2019

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