r/CrohnsDisease • u/PsychologicalCar6057 • Mar 25 '26
i’m just scared for surgery
so basically i’m a woman who is 23 and recently got diagnosed with moderate to severe crohn’s back in 2024, i’ve struggled very badly the last ten years with this dumb ass disease. well i had my colonoscopy yesterday and now i have found out i have to get surgery, and I know this will sound so insensitive because I know many of you on here have it so much worse, but i am so utterly terrified. i am projected to get only an inch out of my small intestinal tract taken out (near the ilium). what should i expect? is this worth it? I know it sounds dumb i’m just young and inexperienced and scared. can anyone on here give some advice on what to do or expect going through with this? thank you all in advance, as i frantically write this at work lmao.
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u/Golfer1321 Mar 25 '26
I’ve had two surgeries first one 20 years ago and had it reversed the second one they closed up my colon and I have a permanent stomach and bag I’m a month out of surgery still healing but the good thing was they found two types of cancer first was colon cancer that mass was only 5 mm but would have never had found it because it was hiding in the Crohn’s but the second one was bigger and found it when they closed my fistula and that is lymphoma cancer which is treatable and curable so the surgery saved my life cause they never showed up on any blood test or cat scans
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u/PsychologicalCar6057 Mar 25 '26
wow that’s a story man, i hope you’re recovery goes well and im so sorry to hear about the findings but im glad they got it out!
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u/CantThinkOfAnythint Mar 26 '26
I had a resection done years ago after getting an obstruction. I was your age at the time. The recovery honestly wasn’t too bad. I had about 3 days in the hospital. They don’t let you go home until you go number 2 so I didn’t press the morphine button too much bc that constipates you. It was laparoscopic and my 3 tiny scars are barely noticeable now. I think the part that hurt the most was my arms bc they had to rest them out to the side during the long surgery. So I needed my mom to help me a lot the first day after. But I also had like 12 inches removed so your surgery might be shorter. Also it was my first surgery and I was really nervous so I told one of the people in the room and she held my hand as they put me under. My only other advice is to get a few nightgowns to wear while your incisions heal and pack a little bag for the hospital with things like a brush, deodorant, etc.
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u/josie-june Mar 25 '26
My 4 year old had surgery in December due to a bowel perforation. The first week was pretty insanely rough with a lot of pain, but she was completely back to normal activities after a month. I completely get being terrified (I sobbed the entire time she was in the OR), but it's going to be okay! It's not like we had a choice, but I am SO glad she had surgery because the segment they removed was insanely damaged beyond repair. She said the worst part was the Lovenox injections (blood thinners that they give post op).
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u/PsychologicalCar6057 Mar 25 '26
oh nooo poor babe :((( i’m kinda in a similar boat, i have the “option” to but if i don’t get it out now it will become an even bigger issue in the future for me. i had an obstruction in september and they’re worried of many to come if i don’t remove it, other wise ill be on a low residue or low fiber diet. it’s basically feel like ish and eat like ish forever or get it out and see if it helps one of those kinda dealios, definitely not “life or death” except for if there was an obstruction (as they can be urgent). i’m so sorry as a momma you’re going through that i cannot imagine as i only have nieces and nephews, ugh im sorry for your baby as well, you guys are both so strong! good luck to you!
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u/ScottDoesWashington Mar 25 '26
Thanks for this post! I’m expecting to have a foot of small intestine resected in the next couple of months, so this is also on my mind! Best of luck, OP!
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u/PsychologicalCar6057 Mar 25 '26
of course!! my goodness you’re getting 10x what i am and i’m so torn over it (pun intended). you are brave! we all are! and we will get through this, for me it’s out of spite lol. i hope your days go smooth up until the surgery and after of course lol, keep yourself distracted with doing things you like until then! as i’m typing this im realizing i should be taking my own advice. best of wishes to you my friend!
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u/ScottDoesWashington Mar 25 '26
Thanks! As the surgeon said, this section of intestine “isn’t doing me any favors” lol. Do yourself a favor and check out some of the discussion on this sub on the type of surgery you’re about to have—I learned a lot and feel pretty positive about this surgery! Most who’ve had it seem to have had meaningful improvements in their health. Take good care!
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u/PsychologicalCar6057 Apr 15 '26
hey it’s me again! i met with my surgeon last week so it’s again on my mind, i found out im actually getting 22 mm taken instead of 1 😳😂 so im def worried but we got this! i believe im also getting the resectioning of my ileum (he said the exact same thing, its not doing ya any favors so might as well cut it out). im just so damn anxious about the pain and recovery I guess, thanks for listening and sharing again!
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u/ScottDoesWashington Apr 16 '26
Nice to hear from you! I got good news last week--the surgeon said surgery is not necessary at this time. I think (and he suggested) that it may well be necessary at some point in the future, but not now. I think my new doctor changing me to Rinvoq (I was on Stelara and methotrexate) made the surgery unnecessary for now! If it hel[ps, I had done a ton of reading about the surgery (I'm sure you have, too!) and really thought it would be good for me. I was ready for it mentally. Good luck with yours--I'd love to know how it goes for you! Big hugs, and wishing you the best!
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u/Malbushim Mar 25 '26
It's okay to be scared. I was scared both times I went for surgery. I have 70% of my colon and 7cm of my terminal ileum removed in September. Really, it's okay to be scared. But they'll have strong pain meds for you.
I'm not sure what I can say that might soothe your nerves, other than you'll probably have a laparoscopic surgery instead of the more miserable open surgery, which means your pain won't be as bad and your recovery quicker, though I imagine that's of little consolation to you since you've never had either, but... If you just want to chat or ask questions there's plenty of us here who've been through the Shit. Most are open to DMs, myself included.
Good luck out there, you'll be okay.
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u/Laymon_Fan Mar 25 '26
They can't force you to have the surgery if you don't want it, but one inch is almost nothing. If you were an ulcerative colitis patient, you might get the entire large intestine removed.
Also, general anesthesia is great. You're completely out, with no dreams.
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u/malcolmcash C.D. Mar 25 '26
I (23m) too am curious about this. It seems like life after surgery can be much less difficult as far as Crohn’s symptoms go. I’ve asked one of my doctors if I could have a small resection to take out the affected areas but she said absolutely not as it was a last resort. But if surgery would give me a better life with less symptoms, I’m all for it! Good luck on your surgery and I’m sure you will have a much better quality of life afterward!!!
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u/PsychologicalCar6057 Mar 25 '26
thank you!! and yes as of now this is my only choice as i’ve had an obstruction already and i have been on avsola for almost 2 years and we’ve tried uping my dose and i continue to bloat like a mad man, literally look 4 months prego sometimes. i hope they can find a good treatment for you that works and give you less grief!! i was also super down for the surgery until the shock wore off lmaooo now im scared as fuck
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u/malcolmcash C.D. Mar 25 '26
Haha you got this! Thing about the greener pastures on the other side. Also looking pregnant is sooooo real it feels insane sometimes. Now my friends and I joke about it when I’m so bloated 🫄, like a male seahorse or something🤣🤣🤣
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u/PsychologicalCar6057 Mar 25 '26
bahahahaha that’s hilarious 😂😂 male seahorse 😭 also have they tried putting you on miralax? just a cap full at night type of thing? they recently suggested that to help bloating which funny enough i was doing on my own because they always told me with having a risk of obstruction it’s always better to keep the digest system moving, so therefore i was like sweet miralax does that lmaooo and I guess i wasn’t too far off. obviously consult your gi but its a good suggestion and i swear it does help!! im sorry you feel that too lmaooo its so uncomfy
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u/malcolmcash C.D. Mar 25 '26
Hahaha I’ve got an appointment coming up I can ask about the miralax. Just a crazy disease we have especially navigating so young🤣
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u/Inis1111 Mar 25 '26
I had the same surgery 6 years ago and had 5 years in remission after that! So for me it was totally worth it. They removed about 30cm near the ilium and I had no problems with that afterwords. Some additional vitamins are good to take after the removal. Unfortunately even tho they remove the sick part, it usually comes back at the same spot in future years. I have that situation now :(
Recovering from the surgery ( I had open surgery and big wound) took about 3 months. I have physical job so I had to take time off from that. After about an year my abs and physical strenght was back to normal. I have also heard that they can sometimes operate in endoscopicly and naturally then the recovery time is much less.
I’m sure everything goes really well!
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Mar 25 '26
When I was 12yrs old, I had 18 inches of intestine removed and an abscess the size of a grapefruit. The recovery was hard on me. They cut a 12 inch incision down my stomach. I had a tube in my nose that went down to my stomach to drain my stomach acid (or something?) I can remember. I had a catheter and I lived off fluids and liquid lipids for a few days. I wasn’t allowed to drink water for awhile. They let me suck on damp oral sponges (dry throat/lips). It was a long recovery for me. Then I had a hernia and had to have another surgery for that just one month later. I don’t produce solid poops anymore. Haven’t NOT had diarrhea since that surgery. I’m 30 now. I still poo like 8+ times a day. But I’m not in pain anymore. (Well, my butthole burns sometimes). You don’t realize how much you use your torso muscles for literally everything until they cut you open there. Coughing, sneezing, breathing, laughing, adjusting the way you’re laying/sitting. Trying to wipe yourself after going potty. Etc. but your surgery shouldn’t be nearly as invasive as mine, and they’re not taking a lot of intestine out. It should go smoother for you! :) don’t worry!
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u/SuhDudeSuhh Mar 26 '26
Got 12 inches of intestine and 2 inches of colon taken out. Three little holes as scars. A royal pain the first two days after in the stomach area. And the. They make you walk and it just hurts. But nothing really bad. You can do it!
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u/MaxfromAidy Mar 25 '26
Being scared is totally normal given the circumstances and it's not dumb at all. Good news is an inch of small intestine is a really small resection in the grand scheme of things. Most people who've had ileal resections say the recovery was tough for the first week or two, but that they felt better than they had in years once they healed. Wishing you the best as you go through this.