Drugs or Surgery

[Road runner]

Hi, I am just new to the forum and although many of you may have had similar posts before I could really do with some help and input from those who have had to face similar decisions before. I live in North of England and I am a 52 year woman.

Started early 2009 with urgency for toilet early morning needing to go two to three times, passing blood, and wind. Generally feeling unwell and tired, sometimes dull pain high up in left hand side. This was initially diagnosed as Ulcerative Colitis spring 2009 and then undetermined colitis in 2010

My first treatment was to be put on Asacol tablets, but these gave me stomach pains.
So changed to asacol rectal foam wash. Side affect made me itch. So was prescribed pred wash. Continued with this for a while but in 2010 we had a holiday in Scotland in the July and had a bad flare up. Severe stomach pains passing lots of blood, soon as I ate a few mouthfuls had to run to toilet in pain.

When we came back I was put on 6 x 25mg tablets of prednisone, wonder drug within hour’s pain gone and able to eat again. But it took me a long time to reduce the dosage as my condition did not improve for a while. Now when I have a flare up reluctantly I have to go on them to control it.

In April 2011 I was put on 4 x 50g of Azathioprine per day and when I pass blood use prednisone foam wash. I have since had another flare up and have just been back to see the consultant who has gave me three options,

1. Surgery, colectomy and eventually an Ileo-anal pouch

2. The drug Humira

3. The drug infliximab


I would appreciate anyone’s help or experiences they have had with any of the treatments as I am really quite new to the condition and I am concerned at my consultants rush to get my decision (he wants me to tell him in a week) on where to go next.

Many Thanks

 

[mikeyarmo]

Welcome to the forum Road runner!

I am sorry you feel so rushed into making a decision. I think no matter what pressure you feel though, at the end of the day the decision of what treatment to take or not to take is in your hands.

I really recommend you research the two possible drugs you can go on in our IBD Treatments forum.

Surgery is the option that remains on the table if you try the other treatment options and they fail. I think you really need to consider how desperate you are to get relief from your symptoms. For example, I eventually decided to have a resection of my intestines after trying an assortment of drugs and was unable to find anything that worked. I had Humira and Infilximab on the table as options, but at that point I did not feel like experimenting further having lost almost 40 pounds and being less than 100 pounds overall.

The biggest con with surgery is that it is total permanent. You should also be made aware of the risks of the surgery. For example, is there the possibility that you will not be able to have an Ileo-anal pouch and perhaps need to have a permanent stoma? What symptoms may you experience once the pouch is made?

I performed a forum search for Ileo-Anal pouch so you might want to go through some of those posts to read more about people who have had them or were considering them.

Take some time to do personal research on all the options prior to making your decision. Consider if you still have the desire and energy to consider trying any complementary treatment option (changes in diet, supplements, stress management, etc.) in addition to a drug therapy to see if you can improve the condition on your own. If you have no desire to keep experimenting though and are ready to go with the most aggressive treatment option that is there, perhaps surgery makes sense.

Good luck with your decision and please let us know what you end up doing!

 

[Crohn's 35]

Welcome Roadrunner :bigwave: I agree with Mike, this is not a fair decision..howeve surgery should be a last resort. In my opinion I think Remicade is the better suited than Humira even though I turned out allergic , many people found it gave them a decent life.

If that doesnt do the trick the surgery maybe your next step. I do not have a stoma , but I have had 2 resections and I am your age, (shhhhhhhhhhh I wont tell if you dont lol) .


Seriously it isnt a nice decision but I wish all the best and keep us posted ok? Btw What country are you from, that way others in your area can recommend something different.

:hang:

 

[KazT17]

Hi, I found myself in your position last year. I am from the Northwest and I am 48. I tried every drug offered to me and nothing worked. I did feel under pressure to try them all, mainly from family, as they didn't want me to have surgery. I went along with it but did hate the toxic drugs I was having to take.

Eventually, when nothing worked, I had a colectomy and ileostomy. I don't know if I am just lucky, but I have had no problems and would never have it reversed, even if I could. It is so convenient and easy to manage. I know others have problems though.

Surgery is a big thing to opt for but it is good you can think about it now in case it becomes an emergency in the future (hopefully not). Get as much info as you can, so you can make an informed decision.

Lots of luck xxx

 

[Lisa]

Over the years, my doctor (at the time) mentioned surgery to me, and each time I declined - didn't want to deal with that! So - it would mean a week or so in the hospital getting things under control, changing meds etc.....I went through many periods of remission (each one shorter) and flares - and I admit, I probably could have stayed in remission longer if I took my meds as directed!...

Anyway - this was before Remicade was used as widely as it is now.....when I first heard about it, I 'wasn't sick enough' to warrant its' use.....only after dealing with fistulas for a couple of years did I start with it - and it has worked WONDERS.....including taking care of the fistulas.

I am still surgery-free, after over 30 years of moderate-sever disease....partly by my own stubborness, partly due to a drug becoming more available for use.

My thoughts would be to go with the drugs - and keep surgery on the back burner - as was said, that is permanent - you can have drugs work out of your system, but you can't grow back something that was taken out of you....

 

[Angrybird]

Hello Road Runner and welcome to the forum. You are truly between a rock and hard place and I don't envy you your position. I agree that if you can, try and hold off on the surgery......this is not a cure at the end of the day so you still run the chance of having to take one of the above mentioned meds anyway. Please have a really good look through our treatment forum as there is lots of info about all 3 of your options, write down all the questions that pop into your head so when you talk to the doc next week you will not forget to ask anything. Do not be forced into a decision, if you are not ready to decide next week and need more time then they will have to wait. Please let us know in how you get on :hug:

 

[Road runner]

Hi All, Many thanks for everyone’s help. I went to see my GP today and although he has yet to receive any word from the consultant we discussed getting a second opinion. He said it may take a couple of months unless I went private but he would find out and get back to me. Having read many threads I feel I am lucky not to be in the position of not been in as much discomfort as some. In the three years of been diagnosed I have managed to keep the steroid count to about four occasions the longest being 3 months.

I have also thought about trying VSL#3. I know it has been prescribed for pouchitis but my doctor could not prescribe it for my condition but was prepared to give me a private prescription so I could get it cheaper at Lloydspharmacy. Has anyone else tried it?

Many Thanks Again.

 

[Crohn's 35]

I have tried vsl#3 but it is costly as we dont get prescriptions for it here in Canada. It does help a bit. Take one sachet a day and work up to the amount of your bms or what your doctor suggests. Taking more than one a day can cause a bit of bloat so just to warn ya. Good luck with it. :smile: