Question for those who have had surgery. I have Crohns of the ileum

[Plissken]

I've always seen surgery as a last resort. But it's been a year now since I was diagnosed with Crohns and a stricture in my ileum.

I've tried all the immunosurpressants and right now I'm on Humira and have been for about 6 months. It has helped a little, but I'm still so temperamental to a lot of foods.

The stricture apparently cleared up within a month of treatment but crohns is clearly still alive and well in my guts

Getting to the point now where I think surgery is my last hope.....my question is for those who have had surgery on the ileum how helpful was it to you? Are you glad you did it?

 

[Grotbags]

I've only had mine for five weeks after 26 years of Crohn's, it's the best thing I've ever done, and I wish I'd had it years ago.
For the first time in years, I have no pain, no nausea, no fatigue, and feeling fab :ycool:

 

[Absentminded]

I had my first surgery in November 2012 and can honestly say that I am glad that I had it done.
Before surgery I couldn't eat anything, was on liquids only for 10 weeks, had fistulas all over the place, had tried and failed most medications available, was rapidly losing weight and was in constant agony.

Since that surgery I have had three other ops (but they were to reverse my Stoma, and sort out two issues that arose from the previous op, I was very unlucky...) but apart from that I have been off Crohn's medications for two years now, my last scope in September was completely clear, I have no pain and go have about 2-3 bms a day (a big improvement from the 15-20 I had before surgery,) I am back exercising and am doing my first half marathon in March. So yes, I'm glad I did it!

Talk it through with your specialist, they may have some other tricks up their sleeve. I hope you find some relief soon.

 

[marshayates]

I had surgery in sept 2014. Had one and a half feet of distal small intestine removed and less than a foot of large intestine. I have had diarrhea 7 to 20 times a day since then. Surgery was necessary though bc i had a total blockage, large cluster of abscesses leaking into abdomen. I feel better now. I just haven't straightened out since surgery. I eat something every couple hours, tske vitamins and supplements to prevent too much wt loss or nutrition loss. Sometimes surgery is necessary. Just do ur research and get a knowledgeable, reputable surgeon.
best of luck!

 

[Justanothercp]

I had small bowel resection 13 years ago. I wish I had done it at least 1 year earlier, it gave me my life back. I still have to take a lot of Meds to control my crohns, but my life is way way way better after surgery. Odds say I will need surgery again, and net time I won't wait/suffer as long.
Good luck to you and keep us posted.

 

[DEmberton]

Absolutely. Even a couple of weeks after surgery I was so much better than I had been for the past two years.

The stricture healed? In my case when they finally diagnosed me the GI said they could try to treat it with drugs, but in his experience once things had got that bad the drugs were unlikely to work and that surgery was the best option. I obviously wasn't thrilled at the idea of surgery but I've never been keen on taking drugs either. But mostly I just wanted it over with.

A couple of things they never told me: I'll need B12 injections for life, and that I'm at risk of bile salt malabsorption causing diarrohea. The latter hasn't been a problem I've had but there's been a few recent threads here.

 

[The Real MC]

Diagnosed in 2005, in remission until summer 2011. Waited too long to seek help, they removed the diseased ileum and another piping with small rupture in intestine wall. Recovery took a while. The only problems have been blockages due to food binding to adhesives/scar tissue, which is an inescapable consequence of the surgery but far better than no surgery at all. But no flare-ups since then. My surgeon recommended greek yogurt to supply the intestines with friendly bacteria, so far so good.

The important thing is "stitch in time" - don't wait too long to seek help. If you having real bad abdominal pain, don't wait for it to go away.

 

[Thistle]

I was exactly the same, seeing surgery as a last option. The last two years have been awful for me, I had been in severe flare pretty much the whole time, tried everything, infliximab failed, tried humira which also didn't have any effect so two months ago I decided to have the op.

Had a subtotal colectomy on 18th dec 2014 and although I'm just over 4 weeks post op I can honestly say I don't regret a thing, I feel amazing, starting to get my energy back, I'm not in constant pain and I pretty much have my life back! I was in tears when I made the decision to have the op but the reality of having a stoma is not as bad as the thought, it beats living with IBD!

 

[Blazinsquad]

I was exactly the same, seeing surgery as a last option. The last two years have been awful for me, I had been in severe flare pretty much the whole time, tried everything, infliximab failed, tried humira which also didn't have any effect so two months ago I decided to have the op.

Had a subtotal colectomy on 18th dec 2014 and although I'm just over 4 weeks post op I can honestly say I don't regret a thing, I feel amazing, starting to get my energy back, I'm not in constant pain and I pretty much have my life back! I was in tears when I made the decision to have the op but the reality of having a stoma is not as bad as the thought, it beats living with IBD!

Hi,

So you live life with a stoma? I notice the picture is you in a festival. Is it possible to "hit it hard" with a stoma? lol

Thanks

 

[Thistle]

Hi,

So you live life with a stoma? I notice the picture is you in a festival. Is it possible to "hit it hard" with a stoma? lol

Thanks

I'm at Wimbledon (tennis) in the picture, I've only had my stoma for just over 4 weeks so I'm still very much in the healing stage, but I see no reason why you couldn't go to a festival once fully healed, I'd probably wear some sort of support belt though, kind of like I plan to do when I start exercising again.

 

[Blazinsquad]

I'm at Wimbledon (tennis) in the picture, I've only had my stoma for just over 4 weeks so I'm still very much in the healing stage, but I see no reason why you couldn't go to a festival once fully healed, I'd probably wear some sort of support belt though, kind of like I plan to do when I start exercising again.

Fair play to you, I admire your positivity and wish you well in future. Is it going to be removed at some point in time?

 

[Melly92]

I had surgery on August 2013 and it is the best thing i have ever done!
I had been diagnosed about a year before hand and i spent the year very sick and also trying different types of meds. Humira worked initially for me as well and then i was having all kinds of trouble on that as well.
I didn't have a stoma at all! you won't regret surgery!!

 

[Matrix]

Getting to the point now where I think surgery is my last hope.....my question is for those who have had surgery on the ileum how helpful was it to you? Are you glad you did it?

Surgery is a good option when your quality of life is going away and nothing is working. It's even more a very very good option when the disease is just on a small part of the bowel. The resection is short and the bowel adjust quickly after. No regret for me after 3 surgeries

 

[Blazinsquad]

Surgery is a good option when your quality of life is going away and nothing is working. It's even more a very very good option when the disease is just on a small part of the bowel. The resection is short and the bowel adjust quickly after. No regret for me after 3 surgeries

Hi matrix,

Could you explain the operations to me? I've had bowel resection and now 5 years on somethings not right. My gut feeling (mind the pun) is there is some sort of complication with maybe a tiny tiny bit of active crohns which also doesn't help. But yeah I think soon I'll have to have Another op was just wondering if the bowel heals just as well after a second one and do you feel its not just a slippery slope. Do you remain active as well with sports and what kind of life are u leading? Cheers

 

[Matrix]

Well, the first one was after a perforation, I was diagnosed on the operating table 15 years ago, 10cm removed. 2007 : 2nd resection iloececal-valve, I had a severe stricture, 20cm removed. And the last one 3 months ago, iloececal (another stricture), another 10cm removed. To be honest the last surgery was very difficult for me. The disease was heavy in the last year and I lost 35 pounds, I was weak and the recovery was not easy at all for the 2 first months, but it worths it, now I'm getting better.

For your question I think the bowel heals just as well the second time, It's just that when you are younger it's easier for the body and with the passing years, the recovery is not as easy as it used to be. And it's worse if you wait until you are very sick, more risk of complications...

I'm still very active, I hope to start playing soccer again when I'll get back my shape

 

[Blazinsquad]

Ah wicked man happy for you, but i have to say its called football I'm afraid mate. I'm not fit enough at the moment either to play but hopefully a diagnosis and a ssecond surgery can sort that out. Think I'll get some cannabis oils down me after surgery as well to help with healing. Was really worried about a second op but this site has given me some reasurrance fair play. Thank you.

 

[Plissken]

Thanks for all the great replies so far. You are definitely making me think I need to just get it over and done with and stop worrying about it

 

[Grotbags]

Perfectly normal that you should worry, I was all for getting an ileostomy, but I was still worried because no matter how many people you speak to, or how much you read, they're experiences aren't your experience, and everyone is different.

A few days after my op, I did actually think " what the hell was I so worried about !" but of course, I didn't know that my op would go so well, and that I'd heal and be on my feet so quickly.
My imagination had run riot, I imagined all manner of horror stories, from uncontrolled post-op pain to burst open stitches. But my stitches stayed stitched, and as for the pain, I'd had worse period pains.

Most people are afraid of the unknown, especially when it's such a change to your life, but do remember, it's a change for the better.

 

[Plissken]

Yeh Grotbags I definitely have thought about those as well as the anesthetic not working when they slice me open lol irrational fears

 

[Grotbags]

Lol, yep, had that one too :ytongue:

Didn't help when my brother told me he sat up on the operating table when he was getting his hip replaced !.
Didn't know a thing about it though, first thing I knew was the surgeon checking on me, and me mumbling that he was a lovely man :redface:

Which was better than my friend who told her surgeon she wanted to have sex with him ! :rof:

 

[DEmberton]

I remember asking the anaesthetist "Am I meant to be feeling drowsy already?", and then I remember being in a noisy recovery room with a nurse looking at me.

I had an operation to reset my broken nose as a teenager, and when I woke up all the nurses were laughing. I found out the guy just before me (who'd been having his wisdom teeth out) was yelling "I want to screw you..." at all the female nurses.

 

[DougUte]

My resection was the best thing I could have done. My post op pain was not as bad as my pain from my blockage. Of course I was also told I could have died if I did not have the surgery. I did not have any stoma and spent 5 days in the hospital. It was an awesome change to my quality of life.

 

[hawkeye]

I had a strictured section of my large intestine removed and should have had it taken out sooner. If the stricture is scar tissue, medication won't work and the only fix is surgery. When they examined the section that was removed, they found it was beginning to perforate so I am glad I had surgery when I did.

I found that the post op pain was not as bad as the pain associated with the stricture (I had a pain medication pump after surgery).

 

[DougUte]

I found that the post op pain was not as bad as the pain associated with the stricture (I had a pain medication pump after surgery).

My pain after surgery was not as bad as the pain associated with my stricture as well. In fact, the record showed I only pushed the button on my pain pump one time while in the hospital. I had become use to my pre-surgery pain and post surgery seemed like a breeze, pain wise. I felt very weak after surgery though.

 

[apl2018]

hey check out my blog I had surgery on 12/11/14 on exact same location. Im 25 year old med student dude from Virginia. Its all good so far,

 

[j.reed315]

Yes I am glad I had surgery. Surgery cleared up my fistula and my abscess, along with a severely scared and inflamed gut. I had no other option. But I was depressed about it, along with other stressors and it came back almost right away and then I was even more upset. I hate win this disease gets one on the scoreboard against me! I believe you will find some relieve, at least for a short time.

 

[apl2018]

you're dead on here. i think it is really hard psychologically dealing with the recovery and things