Resection for terminal ileum?

[Nancye50]

I've been feeling okay but still get LRQ pain at times. I have an appointment in May and scope end of April. If my GI starts talking surgery, what can I expect from resection if my main involvement is terminal ileum? She's said in the past that we need to get into total remission or consider surgery so I just want to be prepared.
And on a really vain note, if I have to have a resection, I'm going to consider investigating a tummy tuck to be done at the same time. If I can't really work out, I'll eventually need/want one anyway.

 

[Nancye50]

Anyone?

 

[edentenley]

I had a terminal ileum stricture that also involved my ileocecal valve. On February 12th, I had an 'ileocecectomy', that removed my terminal ileum, my ileocecal valve, and the first part of my cecum. In total, they removed about 10 inches.

I feel AMAZING...seriously. I am so thankful the surgeon talked me into proceeding with surgery. The surgery itself is painful. My doctor started laprascopically, and then had to cut me open due to scar tissue and a chronic abscess. So I have three small incisions and one larger one on my lower abdomen/bikini line area. I was in the hospital for 4 1/2 days is all. They make you stay until you are passing gas and a small stool. I was super worried about blow out diarrhea after surgery, but I actually had the opposite issue... Its super painful to try and defecate following surgery, cause your abdominal muscles were traumatized. I took a stool softener while on the narcotic pain medication to prevent constipation, because the doctor said it was better to have looser/softer stools than too firm.

I am extremely happy that I had the surgery. I am still in the process of trying to identify trigger foods, as I will have the occasional diarrhea, but overall it has improved my quality of life. Let me know if you have any specific questions!

 

[Nancye50]

Thank you edentenley ! I didn't realize it could be laprascopic. There goes my tummy tuck, huh
How were you feeling before the surgery? Pretty bad off?
My abscesses have healed as far as I know. I know I still have inflammation bc of thr LRQ pain. I don't want to fight surgery if continued inflammation will cause long-term issues and if surgery means cutting back my double-dose Humira.

 

[edentenley]

I was feeling terrible prior to surgery. I actually went to the ER three days before my surgery and spent the night due to ileus...I thought I was re-obstructing. I am soooo sooo glad that I did it!

 

[Nancye50]

So glad you're feeling so much better!

 

[orangesunflower]

Edentenly,

I have a terminal ileum stricture and am scheduled for surgery in about 5 weeks. It sounds like I will be having a similar surgery as yours. My doctor mentioned that my stools may be looser without my valve, but that I shouldn't have to rush to the bathroom. I am concerned I will have diarrhea. I never had that type of Crohn's before so I am worried I will be trading one problem for another. Did you have diarrhea before?

 

[edentenley]

Orange sunflower,
I almost didn't do the surgery because I was afraid of chronic diarrhea post op. The doctor said there was a chance for loosed stools without the valve and I read online of people having diarrhea....my crohns always caused the opposite problem...obstructions and constipation. So I was nervous. My surgeon also said it could take up to a year for my bowels to regulate themselves and reach my 'normal'. The first few weeks after surgery my stools were more loose with the occasional bout of diarrhea with increased urgency. But, now I'm more regular than I've been in years. If I eat a trigger food, I will have increased urgency followed by loose stools...but that's maybe once every two weeks. And heck, my husband has that and he doesn't even have IBD! . So, I'm very pleased.

I understand your worry though! I fretted over it for a long time...then ended up in the hospital with ileus and a mechanical obstruction, and figured chronic diarrhea beats that. Good luck to you!!!

 

[orangesunflower]

Edentenley,

Thanks for responding. That does make me feel better about my surgery. And my husband
is the same as yours and he doesn't have any IBS either! So that puts it in perspective too.

 

[orangesunflower]

Edentenley,

Did you have any referred pain prior to surgery? I have pain on right abdomen, right side below breast area and above hip bone going toward back.
This is where my pains started when I first started to have symptoms last year. Now the pains go down to the Ileum area. If you had referred pain, did surgery remove that pain?

 

[edentenley]

Surgery removed all my GI pain....but the surgeon was able to remove all my "bad parts" which I sure helped.

 

[DEmberton]

What she said. I haven't had any significant problems; occasional diarrhoea and loose stools but most of the time I'm more or less normal.

I was so ill a year ago I'm not sure I'd still be alive now if it wasn't for the surgery.

 

[AJC - Australia]

good luck Nancye50
hopefully the surgery makes you feel better.
i think most crohnies have surgery after they have explored all the other avenues.
i have had 3 surgeries, all around the terminal iliuem.
The first one worked so well, i went from feeling like absolute rubbish to feeling halfway normal and the good result lasted years!!!!!!
some people have that first surgery and never need another…..i hope that is the case for you.
good luck
from australia

 

[taureantiger]

I had a terminal ileum resection last October and am also feeling great...finally.
The only problem was, during surgery they ruptured my gall bladder and it had to be removed...and what started out as laproscopic surgery turned into full open surgery.
Has this happened to anyone else and, if so, did the removal of the gall bladder cause any problems?

 

[Nancye50]

So glad to hear that it helped so many of you! It's not a sure thing for me. Scope next week. And like I said, I feel good. But if this high dose of Humira is only delaying the inevitable, I don't want to resist if she brings it up at appt.

 

[obascin]

I just had a similar surgery (removed 2 feet of ileum, ileocecal valve, a few inches of cecum and appendix. The surgeon started laproscopically but had to cut down the middle to get all that mass out. He said that everything just clumped and swelled together so bad that they couldn't even find the appendix at first.

Before the surgery I was miserable, barely able to make it to work and my relationship and friendships suffered greatly from it. I NEEDED the surgery, at that point it wasn't optional. Now, 3 weeks after the surgery, I feel great. I do have the dreaded diarrhea but I found a single dose of Imodium will set me straight for about 2 days. I also am trying to add fiber slowly back in. It takes some time getting used to, but if you're at a point where surgery is a part of the discussion, don't be afraid. It has already made my life better and I'm not even fully back to life yet.

 

[taureantiger]

Great stuff! You wont know yourself in a few months, you'll feel like a new person.:dance: