Crohn's Disease Forum » Treatment » Do I really need surgery? Stricture but feeling mostly well. Anyone else felt like this?


07-01-2018, 12:31 PM   #1
SvC
 
Join Date: Jul 2018
Do I really need surgery? Stricture but feeling mostly well. Anyone else felt like this?

Hi,

I'm new to this forum and joined because I've never felt so conflicted or confused and I'm hoping to hear from anyone who could offer advice or info on their own experience.I'll try to keep this brief but hopefully with enough detail. I've summed up at the end!

I was diagnosed with Crohns earlier this year. I was first investigated a few years before this- told no Crohns but now looks as though it was missed. Symptoms then alternating constipation and diarrhoea, hospital admission with suspected appendicitis then query ovarian cyst, no diagnosis and now appears that pain was likely crohns. Investigated, not found, told had IBS. Fast forward a few years- episode of ongoing diarrhoea for a few weeks, re-referred by GP, ix for crohns and diagnosed. Other than that episode, again symptoms are more constipation that diarrhoea.
So, Crohns diagnosed on colonoscopy, is in teminal ileum. Started on steroids for 3month. MRI showed stricture and possible fistula going to sigmoid colon.
Surgeon however says in his experience often fistula is not actually there (not entirely sure what is seen on the MRI if not a fistula) and he seems more concerned by the stricture. Currently managing stricture with low fibre diet avoiding skins, pips, stalks, nuts etc.

Treatment discussed with consultant and surgeon. Was told could try medical options- Azathioprine escalating to Inflixmab. Told, however, this is unlikely to help with the stricture as it doesn't help with fibrosis. Surgical- offered ileocaecal resection. Consultant doesn't seem to mind which choice I pick but both IBD nurse and surgeon reckon surgery is the best option.

This is where the conflict comes in, and if anyone can please help me I would be so grateful. Currently, on the whole, I feel quite well. I do get pain sometimes but it is manageable and passes, I've needed to leave work once since diagnosis. It is not the frequent, debilitating pain I read about others suffering. I do feel bloated and sluggish but I'm trying to manage this with diet. I am really tired but my Vit D and ferritin are both woefully low, both being treated and I'm beginning to feel less tired although do have days where I am shattered. I sometimes but not often suffer from diarrhoea, constipation has been more of a symptom for me. Fine balancing act currently with low fibre diet for stricture and avoiding further constipation.

I am terrified of having a resection and developing bile acid malabsorption. I've been told I will certainly have diarrhoea after surgery and they will aim to treat this with Questran and loperamide if needed (I'm in the UK). I am scared of the urgency and possible incontinence that I may have. To me, this would ruin my life and would be worse than anything I put up with now. Surgeon and IBD nurse recommend surgery while I am well however as I'm more likely to heal well and recover faster. I, on the other hand, am struggling to understand why I'd risk my current quality of life. There is a small chance that if previously mentioned fistula is there, I will need a temporary stoma- small chance so I'm not too concerned about that, it's the definite consequence of diarrhoea I am afraid of. And the 3 months on antibiotics, the lifelong meds after, the high chance of recurrence. I am currently due for surgery in a couple of month. I'm considering cancelling and instead trying meds to try to stop the stricture worsening.

Sorry this is so long. To sum up: Have a stricture but feeling quite well. Is surgery really the best option? I feel I may be swapping one lot of problems for another. Has anyone else felt like me? Anyone had a stricture but felt quite well?

Thank you for reading x
07-01-2018, 02:45 PM   #2
Trysha
Forum Monitor
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
Could you get a second opinion regarding the surgery....may be unavoidable if fistula.
I do get strictures both intestinal and esophagus....but my GI was able to dilate both.....
he found the bowel one very difficult to widen but persisted using a series of dilators
and succeed ed with paediatric sizes. No fistula.f
So surgery was avoided and he said he can always repeat if necessary.
Itís a year now and Iím still functioning well.
He prescribed Mucillium on a daily basis...table spoon twice a day in large glass of water.
Iím surprised you are following a low fibre diet..not the best for this stricture...but it maybe
The required treatment where a fistula exists.
You have the right to refuse surgery but be very careful with your decision if there is defined fistula. You may have no option.
I would be seeking a second opinion and even a third before allowing drastic life altering surgery...
Hugs
Trysha
07-02-2018, 01:37 PM   #3
December's flower
 
Join Date: Mar 2018
My gastroenterologist successfully dilated a stenosis on the anastomosis side, December '17 (right hemicolectomy done in April '16 , emergency surgery) .
3 days ago and 6 months after the endoscopic balloon dilation I had an other colonoscopy to see if everything was ok, and so it is except from 6 ulcers found around the anastomosis.
You should ask if you fit the criteria for undergoing a less invasive procedure like the endoscopic balloon dilation before operating.
From my experience if surgery is necessary, you don't have to panic.
Laparoscopic surgery could be ideal for a structure or maybe strictureplasty
07-02-2018, 02:22 PM   #4
SvC
 
Join Date: Jul 2018
Thank you both for your replies.
As far as I know the stricture is not suitable for balloon dilation but I will be asking again to be sure in terms of surgery that resection is the only option. Surgeon says 95% chance will be laparoscopic surgery.
I'm also considering getting a second opinion.

It's just such a difficult decision.
07-03-2018, 05:53 PM   #5
alex1947
 
Join Date: Mar 2018
Location: anaheim, California
T here are conflicting opinions on whether to have surgery or not.

Most GIs want to treat Crohns with prescription drugs as long as possible. The rationale is that every time you resect the bowel there is less and less bowel. In my case I have had 3 surgeries and ten feet removed including my descending colon. The last two surgeries caused the anastomosis (point of resection) to stricture and eventually causing an intestinal blockage. So one surgery is likely to cause another surgery years later. So I delayed the last one for two years.

If you are having fistulas and blockages more than once a month, if you begin to vomit for sure you need surgery.

I had major distention but no fistulas. I managed by blockages by eating carefully. Then 6 months ago I lost 10 pounds, lost 40% of my hemoglobin and was severely anemic. A colonoscopy could not reveal what the stricture had since it had narrowed to 1/4 inch and the instrument could not go through. A barium CT scan only showed a dark area about one foot long but no detail in that area.

So I had surgery on February 2018. The surgeon found that the stricture was at the point of perforation. If that happened I could have gotten sepsis in the blood and could have died in a couple of days.

Moral of my story: Fistulas and blockages, loss of blood and anemia are all warning signs that you cannot wait too much longer, Medicines can help temporarily but as you can get worse then it will become clear that you need to consider surgery.

Good luck
09-10-2018, 08:15 AM   #6
hikerneil
 
Join Date: Aug 2018
Do not be afraid of surgery. I had bowel resection performed in 1986, with about 18" removed. I have lived a happy and healthy life for 32 years. I ride my bike 200+ miles per week, walk 30 miles per week, and have worked a stressful job my whole life (until retirement 2 years ago). I also backpack and hike.

I had enjoyed no symptoms for over 30 years. Recently I have begun to see some signs of low red blood count and iron, so I am now starting to look at options again - even though I really am feeling no physical pain or experiencing very rare diarrhea issues. For me, surgery worked wonders for many years.
09-10-2018, 09:22 AM   #7
Jenn has Crohns
 
Jenn has Crohns's Avatar
 
Join Date: Aug 2018
I was diagnosed with severe crohn's with many fistulas from intestine to intestine and also a bladder fistula that actually caused me to pee out food, feces, and blood. VERY painful and was making me septic. Surgery was my only option and it was worth it. If your doctor is recommending surgery, I believe it's necessary.
I also had strictures which led to scarring and fistulas. I had my ileum and cecum (ileocecectomy) along with about a foot of small intestine removed.
I've also had 2 anal surgeries because of an anal fistula and fissure which caused a huge painful skin tag.
Surgery isn't that big of a deal when you need it. It's not that scary. Once it's done, you're in the recovery room.
I'm not going to lie, for me surgery didn't work 100% as far as diarrhea is concerned. I still go on average at least 10 times a day, but at least it's not 30 like it used to be. Good luck to you.
One more thing. The doctor told me I couldn't have any more babies back in 2013 because the scarring and inflammation damaged my uterus and also caused me to have huge grapefruit size ovarian cysts. However, I had 2 more children since 2015! I have 5 kids altogether, so I feel that surgery was a great thing for me!
09-10-2018, 09:36 AM   #8
SvC
 
Join Date: Jul 2018
Thank you for these replies. Itís reassuring to read of successful surgeries.
As it happens I am going ahead with surgery- Iím actually going in tomorrow!
09-10-2018, 06:34 PM   #9
DHabes
 
Join Date: Aug 2018
Location: Montreal, Quebec

My Support Groups:
Thank you for these replies. Itís reassuring to read of successful surgeries.
As it happens I am going ahead with surgery- Iím actually going in tomorrow!
Good luck SVC! Sending healing vibes your way.
09-17-2018, 09:10 PM   #10
Lynda Lynda
Senior Member
 
Join Date: Feb 2018
Location: Arizona
SVC, keep in touch. We would love to hear from you to see how you are feeling 🌻 Thanks for talking about balloon dialation, as this is the first time I have ever heard of it and I also have inflammation and a stricture in my terminal ileum. My GI mentioned surgery twice, even before I started Humira and 6mp !! My doctor NEVER mentioned balloon dialation as an option. Good health and happiness to everyone. 💙
10-12-2018, 09:40 AM   #11
SvC
 
Join Date: Jul 2018
Hi,
Thank you for the support.
Just to update. So I had the surgery. Turns out I did indeed have a fistula (I knew I did due to location of pain, surgeon had said he thought not- turns out I was right). So I had the ileocolic resection as planned but also limited sigmoid colectomy (with anastamosis). As I had the fistula, I now know that surgery was indeed the right option.

I am, however, now just upset as I am going to need to start immunosuppressants which I had hoped to avoid (deemed high risk of recurrence and so recommended to start). I'm also really tired, recovery is slow! I'm mad at this illness, I'm mad that I'm likely to need more surgery in future despite going through this now, I'm mad that I need more treatment, I am just mostly mad that I have this crappy disease!

Sending healthy well wishes to you all
10-12-2018, 11:15 AM   #12
NuttyGuts
 
NuttyGuts's Avatar
 
Join Date: Aug 2018
Location: McMinnville, Oregon

My Support Groups:
Hi SvC,
It sounds like getting the surgery was the right path for you, and I admire your courage for making the decision at last. Like you, I am now agonizing over what path to choose. I know I have Crohn's in the terminal ileum, and I have a stricture that has gotten larger over the last few months. It has been very painful at times, and I can feel hard masses forming in my abdomen. When I massage them, they dissipate accompanied by loud gurgling noises as things work their way through the stricture. I don't think I have any abscesses or fistulas, but I am afraid of developing them, so maybe I should have the surgery. But if I do, the surgeon says she will also cut out the appendix, the ileocecal valve, and the cecum, which are all in okay shape according to the MRI. I don't understand why we have to cut out the good bits with the bad.So do I risk a lifetime of problems and drugs afterward, and possibility of more surgeries? Or do I risk getting fistulas and abscesses if I don't get the surgery? Right now I am on 5mg prednisone and 100 mg azathioprine a day and have done two infusions of Remicade. The painful masses have decreased and I generally feel okay but does that mean I can postpone surgery? Agh!!! I don't know what to do.
I know you are mad and I am, too. This whole thing stinks!
11-26-2018, 03:42 PM   #13
SvC
 
Join Date: Jul 2018
H NuttyGuts,

I really feel for you having to make this decision. I went back and forth so many times. What swayed my decision was a desire to avoid medication- unfortunately that didn't happen as the crohns was worse than anticipated. Also swaying me was that the surgeon seemed to think the outcome and recovery would be better if they surgery was performed earlier rather than later and without it I was risking emergency surgery (if stricture became obstructed). Nurse did tell me that it was impossible to tell really- I could have waited and nothing happen, or I could get obstruction or perforation etc.
I'm finding with this awful illness that nothing much is black and white and there's no clear answers.
I wish you good health and good luck with your decision.
11-26-2018, 08:22 PM   #14
NuttyGuts
 
NuttyGuts's Avatar
 
Join Date: Aug 2018
Location: McMinnville, Oregon

My Support Groups:
Thanks, SvC.
I am scheduled for surgery January 8 but don't think I am going to make it that long. Some days I feel pretty good, but the bad days are getting worse as far as pain level and unrelenting diarrhea.

The masses forming in my abdomen now happen 24/7 which tells me either the Remicade is wearing off (last infusion was Nov 6) or the stricture is getting tighter. So I am going to contact the surgeon tomorrow and see if she can fit me in before Christmas. And I know that they will want me to continue on Remicade after surgery. I don't want to stay on drugs forever. Have you checked out the SCD diet yet? It's really hard to do (I love my bread and crackers) but it sounds like a natural way to stay in remission. You are so right. This disease sucks.
Reply

Crohn's Disease Forum » Treatment » Do I really need surgery? Stricture but feeling mostly well. Anyone else felt like this?
Thread Tools


All times are GMT -5. The time now is 12:27 AM.
Copyright 2006-2017 Crohnsforum.com