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Crohn's Disease Forum » Surgery » Choosing surgery before medication?


10-25-2017, 02:23 PM   #1
JoeyJava
 
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Choosing surgery before medication?

Hi everyone.

I haven't had a diagnosis yet, and I don't expect to ever get one. However, on the off-chance that I do, I'd like to be prepared.

In a nutshell, I'd like to know if you have the right to request surgery before trialling medication? I'm not sure of the side effects of anything yet, but I know they can't be pleasant. If you don't want to be on these meds, can you make this request?

Thank you very much for your time and experience
💗
10-25-2017, 02:35 PM   #2
Lizzie
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Surgery is a very drastic step, most people do their utmost to avoid it. I haven't had surgery and I hope I never do, but my dad had an ileostomy for his Crohns and I definitely wouldn't go for that instead of medication. I hated taking drugs myself, but I've come to accept this as the price of leading a normalish life. Surgery can be lifesafing and obviously has its place, but never as a first resort in my opinion.
10-26-2017, 10:16 AM   #3
Crispix73
 
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Hi everyone.

I haven't had a diagnosis yet, and I don't expect to ever get one. However, on the off-chance that I do, I'd like to be prepared.

In a nutshell, I'd like to know if you have the right to request surgery before trialling medication? I'm not sure of the side effects of anything yet, but I know they can't be pleasant. If you don't want to be on these meds, can you make this request?

Thank you very much for your time and experience
💗
What type of surgery are you referring to? And do you think you have UC or crohns. Surgery can be curative for UC, but the results vary and you certainly wouldnít have the same bathroom habits of a healthy person without IBD. If you have crohns, surgery isnít curative. You could remove the area that is currently effected, but the crohns could come back and effect other areas of the digestive system and you could end up on medication anyways.

In my opinion, Iím willing to do anything to avoid surgery for as long as possible. Your digestive track is information to your overall health, and Iím not willing to remove sections of it, unless itís absolutely necessary.
10-26-2017, 10:37 AM   #4
DCCrohns
 
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Hi everyone.

I haven't had a diagnosis yet, and I don't expect to ever get one. However, on the off-chance that I do, I'd like to be prepared.

In a nutshell, I'd like to know if you have the right to request surgery before trialling medication? I'm not sure of the side effects of anything yet, but I know they can't be pleasant. If you don't want to be on these meds, can you make this request?

Thank you very much for your time and experience
💗
Agreed that surgery shouldn't be your first option (although it may be the best, in the end, and often in combination with medication).

Solid surgeons won't consider surgery (unless an emergency) unless your Crohn's inflammation is as minimal as it can be (which often is the result of finding the right meds). They want to give tissues the best chance of healing and even a small amount of inflammation can prevent that. Definitely seek out multiple opinions from gastroenterologists as well as colorectal surgeons. Ultimately who you work with should be a team and look to find the right mix that gives you the best chance at success.

Good luck!
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~~~~~~~~~~

Diagnosed with Multiple Fistulas: 2000
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg weekly)
Surgeries: Gall Bladder Removal (1997); Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)
10-26-2017, 10:42 AM   #5
ronroush7
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I would go the route of medicine first. Ask your doctor's advice. There is a section in here for people who have not been diagnosed. You might ask in there also.
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10-26-2017, 12:47 PM   #6
JoeyJava
 
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Thank you all.
I think it's Crohn's. I am referring to at least the removal of anything currently inflamed or possibly a stricture. With respect, I understand that it's a drastic step, but considering my quality of life at the best of times, relying on more medication with more side effects that I need to suffer for the rest of my life is the last thing I want.

Also, consider this: medication is always an option, but the longer any treatment becomes delayed, the more I'm deteriorating, and the probability of the surgery being safe to perform decreases at the same time.

Of course, I'd need to know more about the effects of the specific medication offered to me before making the ultimate decision. I'd like to know if I DO get a diagnosis and put in this situation, and I come to the conclusion of surgery being preferable, would this be respected?
10-26-2017, 11:27 PM   #7
Lady Organic
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Since you have no diagnosis, we cant give you an answer to your specific question I guess...
Each IBD patient is different. IBD can cause all kinds of issues and inflammation and if inflammation has not yet destroyed or put in great danger an organ, I highly doubt a dr will accept to recommend a surgery to the surgery department, since inflammation is manageable with medication. i dont think such a request would pass. This is what i believe, but I may be wrong. Medications will be proposed and of course it becomes the patient's decision to take them or not. If a patient doesnt take medication or if all the medications continuously fail on the patient, the risk of surgery increases tremendously, not to mention emergency surgeries. Surgery comes with a lot of possible side effects too and are often to be repeated especially in Crohn's. One part of track can be highly damaged and after removing part with surgery, times later, diseases can comes back on other spots, nearby or anywhere in GI track. Repeated difficult experiences we dont wish for as IBD patients...

I would really encourage you not to think too much ahead. this is really not necessary and puts stress on yourself for no valid reason yet. I understand you are scared and in pain with probably difficult symptoms, but try to remain optimistic that you will have good medical care and come to understand what is going on inside your body.

Did you have access to a gastroenterologist? Did you pass any tests?
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-29-2017, 07:21 AM   #8
Ste76
 
Join Date: Oct 2017
Location: Eastbourne, United Kingdom
Hi everyone.



I haven't had a diagnosis yet, and I don't expect to ever get one. However, on the off-chance that I do, I'd like to be prepared.



In a nutshell, I'd like to know if you have the right to request surgery before trialling medication? I'm not sure of the side effects of anything yet, but I know they can't be pleasant. If you don't want to be on these meds, can you make this request?



Thank you very much for your time and experience



I have been ill since 2009 had gallstone removed 2013 pain was from middle up
But since eating crohnís diet and medicating myself my pain is in the lower part so medication first hope you get the help you need soon Bless


10-29-2017, 10:48 AM   #9
Bufford
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Surgery carrys risks, and the other thing is that inflammation often returns with a vengeance to areas that have been disturbed by the original surgery. This can result into a full blown return of the symptoms.
I would strongly advise changing your diet, and experiment with different foods. Try taking vitamin supplements and herbal remedies that can be found on this site.

For me a low residue rather boring diet works well. 4 smaller meals a day instead of 3 larger traditional ones. I also take a wedge of ginger and chew it down and swallow it prior to mixing a teaspoon of powdered tumeric into a glass of water mid morning.
There are lots of different remedies found on this site. Everybody's system is different, but finding the right one may mitigate the need for surgery.
10-29-2017, 02:39 PM   #10
JoeyJava
 
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Thank you all. I've thought about low fibre, but I'm between a rock and a hard place with that. All I can really think of would be my unsweetened soya milk which wouldn't maintain weight, although I've planned to try it anyway and study the effects of reintroducing food.

I can't tolerate more quickly digesting foods unfortunately and I've asked for supplements to support me, but they won't even consider it.

Ah well, time to have a play around, I suppose, and see where we go.
11-02-2017, 11:08 PM   #11
mere282
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I would say probably not. Surgery only creates more complications .... good luck


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