Surgery or not?

[ACNewt]

So I am a little torn. I went to the ER last night after having the most horrific pain in my gut that travelled around to my back. They did a CT scan and apparently the inflammation of my terminal ileum has worsened, causing the extreme pain. The surgeon told me he can do surgery... removing the inflamed terminal ileum (along with my appendix it sounds like) or I can continue to seek medicinal treatment.

I am not sure what to do. I kind of wish he wasn't giving me a choice, I wish he would just say YES you have to get surgery. The medicinal route has not helped so far but surgery scares me to death...

I am so scared and lost... It doesn't help I am out here with no family and have to make this decision on my own. I don't want to make the wrong one...

Has anyone been in this predicament?

 

[CDDad]

Well, you can't live with pain like that. Have you been on a higher dose of Pred? 30mg is a good start but maybe you need 50 or 60mg to calm this thing down. and then what about the biologics like Humira? They take a while to work so might not help quick enough.

Is that surgeon a Colorectal surgeon or general? If you have the time and can select a surgeon, find one that does this type of surgery every day.

When they remove the ileum, they usually remove a bit of colon too, and the ileocecal valve. If you have time, do a bit of research on that. Some people do fine without that valve and some have worse diarrhea, but I think those are the ones who lost alot more of the right colon (like my 1st surgery).

Good luck, and if you have a great surgeon, you can be back and better than before! (especially if they do this laparoscopic for quicker recovery.)

 

[Jennifer]

Did the ER doc contact your GI? What did your GI have to say? Generally I don't have surgery unless I've tried all the medication out there because surgery isn't fun, there are dangers with any kind of surgery, and you only have so much bowel in the first place.

I've had a resection before in the same area because medication wasn't doing anything even with high doses (I think they had me on 75mg) of Prednisone for over a year. I think you should contact a GI doc first before going through with it but it really depends on the severity and only you and that ER doc know the answers to that at the moment. Leaving the inflammation there will only cause further scaring which you can't get rid of.

 

[JohnathanO]

Surgery

I was in the same situation a month ago. I had severe pain along with bloat and really noisy intestines. I finally went to my GP and he sent me for testes. X-rays, ultra sound and they showed nothing. I was then referred to a general surgeon who had a ct scan done. I was then told i must stay in the hospital and get IV and possible surgery. I said i would not go ahead with anything until all of the results were sent to my GI. I signed myself out and had the results sent to my GI that evening. The way the whole situation was presented to me, i was prepared to drive the 3 hours that night to be by my GI in a hospital that deals with this every day. The next day i was called by my GI and he said the results showed i had crohns and there was a bit of over reaction by the gp here. If i had been someone who had never had a history of any issues then they would worry but since i had chrohns for 13+ years it was a result. I was treated with meds and everything is settling down somewhat. I am now on Humira and hopeing for the best. I guess my point is if I wouldnt have talked to my GI i may have been cut that night like a cheap roast since there is no doctors here who specialize in intestinal issues. I will just keep fighting the good fight and see how it goes. Keep us posted on how things go.

 

[Astra]

I was in the same siuation back in January. Doctor at the hospital put the frighteners on me too! He said there was no other alternative.
Er, yes there is!!
My gastro man came to visit me in hospital after 5 days, and immdeiately put me on 50mg of Prednisolone and Metronidazole (Flagyl)
Here I am, nearly a year later and in remission.
We've talked about Humira the next time I'm in this situation.
You need to talk to your doc, tell him your fears, ask about other meds, don't be intimidated into surgery without weighing up other options.
Can I ask?
Why are you on Entocort AND Prednisone? Are you weaning off one of them?
Take care and don't be scared, we're all here for you
xxx