Please give me some advice on possible resection

[justed]

Hi All. Im Ed and 62 from England and new to the forum so hello everyone. Ive had crohns now for about 4 years now and have never had any respite, just a steady worsening of my condition. Ive been on mesalizine all that time and quite honestly it just doesnt seem to help me. The first couple of years, Steroids seemed to help, cutting down toiletry visits quite a bit but now they dont seem to make much difference and im spotting regularly. My specialist has had me on immunosuppresents but I have had serious problems with side effects. Anyway as I cant take them my options are not good. My specialist wants to put me on the biologics that are available, one now is a injection fortnightly. Cant remember the name of it, but after hes spelled out the fact that side effects can be far worse, its got me real worried. As Ive told him,"I dont want to be taking a drug that could possibly make my life worse". Now hes shocked me by suggesting an operation and unfortunately because my crohns is only 30cm in from my anus and that the main inflammation is in that 30cm he wouldnt be able to do a resection and that it would be a case of removal of that section, my anus sewn closed and a cholostomy bag being fitted with no option for reversal, Ive got to be honest, Im petrified and I need someone out there to help me if possible. I know if this happened I would never be able to sleep with my wife again from embarrasement and I wouldnt feel like a man anymore. The thought of a bag on my body is just doing me in. Any advice anyone could give me would be most grateful, Thanks All

 

[nogutsnoglory]

Ed I am sorry that your disease is so aggressive and doesn't give you a chance to rest and enjoy life. I can tell you from my experience, I wish I had tried the biologics before my first surgery because I will never know whether I could have avoided or delayed the need for it. Granted if your condition is mainly scarring than only surgery can fix it but if it is inflammation or inflammation and scar you may be able to keep the intestine. The more you can keep the better as surgery can cause other complications.

I know the biologics sound scary, we probably have all been down that road saying gosh my life is over if I take one of these things. That being said, keep in mind your life may just be beginning by taking a chance on a medication that could really reverse the damage and put a halt to your disease. These drugs would not be approved if they were dangerous to most people. The risks are real but the frightening ones are pretty atypical.

I hope you will feel better, whatever decision you ultimately make.

 

[justed]

Thank for the advice and kind words. It all helps. Cheers

 

[grt73]

Hi justed,
I am new to the forum too and am currently sporting an ileostomy bag after last years emergency surgery. I don't know if I'm gonna get a chance to have a resection done and if I am honest I have spent the last year crapping myself ( or not as the case may be) i am currently two weeks into azathiapine and the side effects have been pretty rough so far. Seeing my doc this week for a check up. The only advice I can give you is how i would deal with it, do i try the bio and see how it goes, if side effects are too bad then its time for me to stop taking them. In the last year I have listened to a lot of docs who talk utter nonsense. I have opted for the 50% docs advice and 50% how my body feels and what I think is right for it. Surgery will always be an option for you so I think I would try the bio's and see how it goes. On the flip side, I spent a lot of years in agony not knowing what the hell was wrong with me. I lost two thirds of my small bowel after a series of ops and have now been told I have inflammation in my large bowel too. I am however pretty much pain free and that makes me smile! Having a bag fitted, I thought was the end of my world. It took me 3 months to be strong enough to stay awake all day and I started back at work (as an electrician) I am different now but we adapt, most people you choose to tell are supportive and want to understand. The rest aren't worth worrying about. As for home life, I felt the same and on occasion I still do. Sometimes can't bare to look at myself in the mirror. My other half though has been amazing, she says it doesn't matter and do you know what, I really believe now it doesn't. Try not to panic my friend, you still have options like the rest of us. Do what you think is right and keep us posted!!!!!

 

[shamrock15]

I have had remicade for 4-5 years now, also in conjunction with azathioprine. I have also had multiple resections, including an ostomy that was reversed.

If you look at the operation as a near certainty, what do you have to lose with the biologics? They work quite well for most (admittedly not all), and you will likely know that very soon after starting. They made all the difference in the world to me, showing me remission after 20+ years of active disease. The surgeries aren't exactly a laugh a minute, and depending on how your crohn's works, won't necessarily end your issues. Crohn's can be scary, and right now I think you may be running on emotion and need an objective look at what is right for you.

 

[wild_one353]

consider doing a fecal microbiota transplant which has been shown to induce remission without drugs and may cure the disease. http://www.crohnsforum.com/showthread.php?t=52400

 

[UnXmas]

I recently got a permanent ileostomy and I'm loving it. It's improved my quality of life no end. I know many people find it hard to accept the idea of a "bag" but I feel no embarrassment about it. The only thing I'm finding a bit embarrassing is the noises the stoma makes. But compared to the embarrassing symptoms disease brings, an ostomy is not even close to the worst ones.

 

[justed]

Thank you all for your comments. Really appreciate it and its made me realize the biologics might be worth a try. Thanks again