Not sure I should have surgery

[Kip1]

I was diagnosed with Crohns in TI & lots of severe ulceration when I had a colonoscopy in november 2011.
My GI tried me on entocort but & had terrible indigestion & could not seem to sleep at all so he took me off them without tapering & said I would need surgery as all the upper abdominal pain I was experiencing was due to the crohns causing narrowing further down. He also says he will start me on aza after the surgery.
I have had many abcesses & the past & some requiring surgery & also heartburn-indigestion, mouth ulcers & fissures & also skin & joint problems too.
I did keep thinking all the problems I was having were due to the fact & was on a daily dose of antibiotics to prevent bladder & kidney infections as for years I have had re-occuring infections in both & had had many surgeries for these problems.
I seem to have had problems with both D & constipation on & off for years also but thought that was down to IBS. My mum has Crohns too but only ever had bowel problems & has had 2 resections.
My problem is that because my D is now a rare occurance in the last 2 months I thought I may be able to delay surgery but my GI said no. I did have a rash all over my face at the time & sores in my nose & severe joint pain. He said this was all crohns related so I did need the surgery.

I feel at the moment that I am not being given a choice & think that my docs seem to think everything I have is crohns related. It is hard for me to comprehend this at this moment in time as although I feel unwell I am not in severe tummy pain now.
Maybe I am just worried about having surgery again as I have had 15 lots of surgery in the past & I am dreading the thought of it.

Does anyone have any advice :sign0085:. I dont feel I am being given any other option.

Thanks

Helen

 

[Kip1]

Sorry for such a long post by the way.

 

[handle]

Hi Kip1,
Your feelings are very important. Have you been tried with any of the biologic drugs (Remicade, Humira etc?) It would be worth seeing if they calm down your condition before any talk of surgery. Have you had your vitamin and mineral levels tested? Some of your issues sound like iron and possibly other deficiencies. And finally, have you had tests to determine whether there is scar tissue present, or whether it is inflammation? I think your issues are complex, but that doesn't necessarily mean you need surgery. It would seem you have other options available.
good luck.

 

[Kip1]

Hi
Thanks for replying.
I am supposed to be given 6mp or aza after the resection. At first he said I could try them for 3 months without surgery but he changed his mind when the entocort he put me on didnt suit me. I think I should have more options but when I rang the nurse specialist she contacted the GI who said they were having a meeting with the surgeon to discuss my case. She rang back later & said the discussed it but still said surgery was the best option. Now I feel I am being forced in to it.
I was thinking of getting a second opinion at a different hospital.

 

[Grumbletum]

Hello Kip. Sorry to hear about your dilemma :-( I was going to say exactly what handle said. I was referred by a GI in one hospital to another in Inverness for pre- op assessment as he thought I needed a resection for chronic inflammation and an abdominal fistula.
But the surgeon advised against surgery and they put me on Infliximab which has done the trick. This was however because I didn't have a lot of stricturing at the time.
I'm guessing that will be the deciding factor and that after the surgeon consult they'll give you more reasons for the treatment they advise.
Let us know what they say.

 

[Kip1]

Hi thanks for replying.

I suppose that because I dont have D a lot & weight loss I dont feel I need surgery at the moment.
What does the drug that you are on do exactly?
The only things he has suggested are entocort which didnt work out & aza or 6mp.
I take lansoprazole for the indigestion/heartburn etc.

 

[Kip1]

I suppose I still also cant get my head around this disease being responsible for my other problems such as skin & joint trouble.

 

[handle]

Hi Helen,
Have you had a CT scan or MRI to determine the nature of the narrowing? Not sure why your G.I hasn't recommended Infliximab (or Humira) as Grumbletum indicated. It's a very popular drug for Crohns these days, only held back if their is a history of lymphoma. The drug works by blocking TNF-alpha which is part of the inflammatory signalling pathway, and it is also used for arthritis sufferers - so good for joint pain too!
Unfortunately, the illness can cause disruption to inflammatory pathway signalling in other parts of the body...affecting skin, eyes, and joints.
I strongly agree with your thoughts about getting a second opinion.

best wishes.

 

[Grumbletum]

Oh, I didn't spot that you are another Helen Yes, this is a real bummer of a disease. Even though my gastro symptoms are in remission, I've developed Psoriasis and still have issues with joints. GP reckons they are Crohns related.

 

[Terriernut]

Helen (Kip) I think you should get a second opinion on surgery as well. But I will say that so many of us wait till the bitter end for surgery, when we should've had it when we were healthier (that would be me for one)

With your presentation of CD, skin, joint problems, I am suprised you arent on Remicade or Humira as well! The only thing I can think is...NHS cut backs because those drugs are very expensive. But also, it sounds like your GI likes to start with the lighter meds first rather than hitting it hard and fast with the big guns. (however surgery is one BIG gun innit??)

 

[Manzyb]

I agree, I think you should have a second opinion.

I'm a bit surprised myself that they have not discussed any of the biologic drugs before surgery. did they tell you if the narrowing is from scar tissue or from inflammation? Have they tried prednisone instead of entocort? I think i would try other options before surgery, but that is just my opinion!

 

[Kip1]

Hi everyone, thanks for all your reply's.
The only tests I have had are a colonoscopy & gastroscopy. I have only seen my doc twice at Rotherham hospital. My urologist is based at the Hallamshire hospital in Sheffield & that is a teaching hospital so I feel that may be a better option for the Crohns also.
I also have endometriosis so fear more issues with surgery as when I had my hysterectomy the surgeon said my bowel was full of it & could only remove half of it for fear of causing problems with my bowel.

 

[DustyKat]

I don't think it ever hurts to have second or more opinions Kip. I would find out from your current team why Prednisone wasn't tried or why you weren't given medication along with the Entocort to combat the indigestion.

I think the most important thing for you to find out is what type of narrowing you have as that will dictate what drugs are suitable or if surgery is required. If the narrowing is due to scar tissue then no drug will alleviate it, surgery is your only option.

Your other symptoms...facial rash, joint pain, nose and mouth sores...are very likely extra intestinal manifestations (EIM's) of your Crohn's so the docs are probably on the money with that.

Dusty. xxx

 

[Slim Johnson]

I would bet a dollar that you need surgery to fix the scar tissue. Even without D, you can still be really sick.

I would want to echo the GI's opinion that the joint pain, and skin issues are Crohn's related. I have had to deal with arthritis, osteopenia, skin issues, mouth sores, nose sores etc.. All thanks to CD. Even one month post-op, I still have joint issues, and arthritic pain in my back.

Surgery is scary. Crohn's Disease is scary. Get a second opinion, get a third opinion.. Do what you need to to make sense of what is going on. Just don't avoid surgery... Especially if you need it.

About two months before I had surgery, I had a fortune cookie. In the cookie was a message that read, "Delay is the worst form of denial." In the moment, it made perfect sense.

 

[Kip1]

I am going to discuss it further with the colorectal surgeon I am seeing on the 20th. My mum is going to come with me also. She has had Crohns for 40 years so knows the score. I am going to ask for some medication before surgery to help with my joint issues because at the moment to lay on my back is way to painful for my neck. If I am not happy with the outcome of that appointment I will ask my GP to refer me to the Crohns clinic at the Royal Hallamshire hospital in Sheffield. I will look in to Humira & the other drugs suggested in the meantime.