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I have crohn's in my small bowel. I am in pain daily. I have watched my 17 yr old son go through sooo many meds, infusions, steroids with no remission yet, its been 2 yrs. Thank god he is not in any pain. I am still in the testing phase. I am getting 2 MRI'S as we speak. If it was up to me i rather get cut it out. And have quality of life as long as i can. I know there is no cure. Any thoughts?
Reply posted for Yvonne111.
I wish I could go back to years before I neede surgery and give myself the following advice:
-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.
Joined Nov 25, 2019
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:
Reply posted for Jaime143.
What type of surgery would you be looking at? Surgery is usually a last resort. Crohns affects everyone differently, as do the medications. Why would you go thru surgery before you try the meds, when one of them might bring you relief?