Crohn's is in remission but stricture is causing problems - Is surgery worth it?

[seaofdreams]

Some of you may remember me - The last time I was here, I was just beginning methotrexate. I apologise in advance for the novel I'm about to write haha.

I've been on MTX for nearly 9 months now but for the past 3 months or so, I've been bouncing back and forth between C and D (never extreme though, only a day or two of C and my D is more soft than watery), experiencing bloating and pain as well as being extremely fatigued. My GI sent me for a scope since he was unsure of what was causing my symptoms - MTX is well known for sapping energy but it didn't explain my digestive issues and I didn't have my normal flare symptoms like mouth ulcers or erythema nodosum. Also pathology work wasn't showing anything conclusive.

I got the results of the scope yesterday. My Crohn's is in complete remission - not a pinch of inflammation in sight which is fantastic news! :applause: The less positive news is I have some nasty scarring and a fibrous stricture in my terminal ileum which is causing my tummy problems.

My GI has given me three options:
1. Balloon catheter dilation. This procedure would involve my specialist going in with a colonoscope and using a medical balloon to expand and stretch the narrowed area. This procedure requires little recovery time but there is a risk of perforation and complications. It's also only a temporary fix and will likely require multiple attempts to achieve a noticeable result.

2. Do nothing.

3. Resection surgery to remove a few centimeters of the Ileocecal valve where the stricture is.

I am terrified of surgery and have always said that I would do almost anything to avoid it unless it was literally threatening my life. I have read far too many stories of people going in for a resection and coming out with a stoma or short bowel syndrome. At the moment, my alternating C & D as well as pain and bloating is uncomfortable but I've lived with it for 5 years and have crafted my life around managing it and am doing pretty well. While it would be amazing to live my life without these symptoms - I'm scared to take the risk of coming out of surgery in a worse condition than I started with. Better the devil you know, right?

My doctor is confident that a surgery will leave me essentially symptom-free but he has acknowledged that - like all medical procedures - there are risks. He has advised that because I only need a very small section removed, my recovery will be relatively quick and uncomplicated. The section that needs to be removed is in the ileocecal valve which is the muscle which regulates how much enters the colon so I'm imagining that if it's not able to regulate the speed of movement between the small and large intestines, my D would be worse.

The idea of not having to worry about feeling sick would be amazing as I suffer from agoraphobia thanks to my years of never knowing when I would need a toilet. In the same vain - the thought of risking short bowel syndrome and making my D and anxiety worse is a horrifying thought.

I have an appointment coming up with a surgeon to discuss what the surgery would entail within the next two weeks and then I'll be seeing my GI in a month to discuss what I want to do. I would love to hear the experiences others have had with resections - particularly of the ileocecal valve and any advice you would like to share. Thanks for reading

 

[chickee]

Nicci;
I feel our turmoil! I too, have very similar situation with the scar tissue build up and stricture in the terminal ileum. I currently am on entocort and my inflammation has not been that bad lately. I recently got over a nasty flare with gastritis to add injury to insult. Now I am more constipated than diarrhea, but straying from my diet causes terrible diarrhea. When I have to go to the washroom, whether diarrhea or constipation I get nauseated and feel faint. My specialist gave me similar options, but I can be a bit stubborn, and I very informatively chose no surgery at this time. I'm not trying to give you direction, only saying hang in there, and know...YOU'RE NOT ALONE!!!!!! Good luck with whatever you choose. As a side, I do know that the stats are pretty positive for small resections of the terminal ileum but l just haven't chose that route yet. Probably a lot of denial, cause without eliminating a stricture caused by scar tissue and not inflammation, meds really are not the answer. I see our decision as sitting on the edge of the pond, thirsty as hell but not ready to take a drink!

 

[Ahmed]

Hi Sea of dreams,
by chance i saw your last post about your case and the 3 options that you are facing.
Really i was wondering because my case is mostly similar to your's.
My last endoscope shows that at i have narrowing in terminal ileum.My GI said that there are no trace for crohn's in my colon except this part that have narrowing and he didn't give me any more details.
first he said about resection or dilation by balloon to this part that was while i had a relapse in hospital.Then he changed his mind after i went out from hospital and began to be in good condition and he told me that i have to continue with our medication (Remicade 5 infusion and Prednisolone 5mg per day)
After that i had a relapse (The relapse =partial obstruction ---->Vomiting,diarrhea, cramps and heating).
this relapse often occurs during the end of the period between Remicade infusions.
anyway he go back again and talk about resection and wants me to go to surgeon.
I'm really don't know now what is the right decision?
I saw that i have to share and exchange experience with you
i like to hear from you what is your case now ?what is your decisions and plans?what the GI and surgeon are say to you?
Nice to meet you
what are the news now?

 

[SarahAnne]

Hello all! This is my situation, only advanced a little. I have severe narrowing at my terminal ileum where I had my resection 15 years ago. The last 3 years I have been getting dilated at this area during my colonoscopies. The first year it worked great, kept the area open about 6 months, the next year it was only 3 months and this past year it only opened the area for about a month when I could feel it closing again. I feel the same way when I get my Remicade infusions, they work great for a few weeks but they weren't holding the area open for the full 8 weeks.

I consulted a surgeon, and I'm having a resection in less than 2 weeks. I wasn't completely obstructed, but narrowed to the point where nothing was getting through, I was vomiting everything up and had lost 20 lbs. I had an upper and lower scope, as well as a sbft. I have a small area (8-10cm) that is very inflamed and ulcerated. I'm opting to have it removed, I can't take the constant back and forth anymore. To me, surgery is my only option so my body can get back to normal. I'd love to eat again, I've been on a liquid diet and supplements for over a month.

Good luck to all of you! The decision is different for everyone, I will let you all know how my surgery goes!

 

[Grant]

seaofdreams, I would go for balloon dilation. If you can avoid surgery then do it IMO. If you've no active Crohns then thats a huge plus. It may be risky but I'm sure I heard its standard procedure to have a team on standby when colonoscopys are in progress.
Good luck with whatever you decide to do.
Ahmed , good luck to you too. Hope things work out.
SarahAnne-all the very best for your surgery. Hope it brings the relief you need.
Rgds
Grant