Calling all ileocecal resection 'recipients'

[Nak2007]

Hello
I'm new here and will get right to the heart my question. I’m interested in hearing about bowel experiences after having an ileocecal resection. I have read a lot about the diarrhea that folks have but wondering if anyone ever has relatively normal BMs on a regular basis after this particular surgery. Do the folks that do experience a lot of diarrhea also have incontinence? Do you have to go more often? Lastly, does your gut make a lot of noises (regardless of diarrhea or not)?

Here is a brief summary of my Crohn’s story. I was diagnosed in 2007 after extreme abdominal pain brought me to the ER, had my of my appendix removed and eventually had the all-telling colonoscopy. Humira was the biologic that gave me a long, eight years of remission. Eventually a bad flare up put me in the hospital again. We first tried doubling the normal Humira dose which worked for a short time but the drug was clearly reaching the end of its efficacy, despite therapeutic levels in my system and no antibodies. My GI switched me to Stelara. It has never worked as well as Humira did. Another colonoscopy showed increased scar tissue so we tried balloon dilation. First one lasted 9 months, second lasted 1.5 years and the third will be the last. It took much longer the third time due to the tortuosity of my terminal ileum area and the extreme narrowness from the built up scar tissue. So now that no drug can battle the fibrotic tissue, I need to have a resection. I knew this day would come but was hoping it was still years away. I have obvious reservations, many of them focused around what my BMs will be like post surgery!

Would also be interested in knowing how many resections you've had and # of years between them.

Thanks in advance.

 

[Ignotius]

hello,
i just had one in september after removal of an abscess, fistula, and appendix...with an ileostomy in the middle...

so.....its a little hard to say some things....i didnt know what to expect or what was normal....but i will say my experience..

with me, and this covid situation them wanting to keep empty beds and whatever, they kicked me out less than 24 hrs after the procedure....before i even had a BM.....told me, oh, there might be alot of blood....might not......ok great.......its like come back if you have a fever these days....

the reversal part tho seemed to mess me up worse than the first one that cut my entire abdomen....nerve damage and cramps wise and such...

i was scared to eat much variety of anything....but i know i am/was more afraid of constipation than diarrhea...def more loud noises...regardless of stool condition.

but i also was afraid of probiotics and......i mean, for me, i went from loosing over 1/3 my body weight and practically couldnt eat anything at all before surgery....probiotics were like a nuclear bomb....but i found a value working them back in and certain strains in particular, then onto a lacto/bacillus complex more recently......i still feel things are progressing some but i notice things, like every gas bubble some days....simethicone helps some, but im still learning diff ways to cook and eat too.

so its not any routine, or starting from anything normal at all.......couple days ago i had one pretty perfect BM....couple belly rumbles, and that was it....so amazed felt like ok so thats whats supposed to be normal....i had no idea.........so....its irregular still, leaning toward soft can be 3x per day...

suffered by this for years but less than a year diagnosis for me....they want me on humira i have no idea what to do just yet....most/all of the damage was removed but i know its complicated.....

interesting to hear of your long time experiences, best wishes.....i think really tho, if you are needing to go into this, you will feel overall much better with more damage removed....i dont know if you will think it about so much by then i mean....

if i want to try and regulate....idk if you ever had an ileostomy but i learned easy some common thickeners of output like reheated potatoes or unsweetened applesauce.....regulators that are smooth going thru you know....certainly dont want to take anything like loperimide...im sure you known..

regards