Surgery is most likely...

[Johnatron]

Hey everyone, this is my first post here but I need somewhere to vent and talk to people who can associate with my situation. To cut a long story short, I was diagnosed with Crohn's Disease over two years ago at the age of 16 and since then have never fully been in remission. I was on prednisolone for a lengthy amount of time and was taken off it at the fear of long-term side effects. About six months ago I started on the Humira jab which I take every fortnight, but so far there has been no visible improvement. At my last consultation my gastroentorologist suggested surgery as a more effective method and will have to be highly considered if my symptoms not improve. I asked if I would need a colostomy bag (something I would greatly oppose too) and he assured me I would not, and that the surgery would involve a resection, taking out the inflamed/diseased area. I am currently in so much pain as I type this, I think I'm having a particularly nasty flare-up. I just wondered if other people have had this surgery and what their recovery was like and how successful it was in terms of their quality of life. Right now I just want to cry I am hurting so bad. I have another consultation tomorrow, so may just push forward with the surgery idea. Any opinions are appreciated.

 

[KayleighMeek]

Hi I'm sorry you are going through such a tough time and have a big decision to make. I may need surgery in the near future as every time I see my GI they mention it just a matter of time. I was told by the dr though not to see it as a last resort and for some people is a better treatment option than some meds. The only thing that is strange is your dr assured you that you wouldn't have a bag it's just they would usually say they don't know until they get in there but could give you their opinion that it was unlikely that you would need one, not a deffinate no.
If you aren't sure about surgery have you asked your dr about upping your humira you may be able to get it weekly this is what I had when I was on it and it did help with symptoms.
Wish you all the best and don't have to put up with the pain for much longer x

 

[spiceman]

Hi there, just to make you feel litte at ease. When I had my first op the first question I asked would I need a bag, straight away he said no its just a resection. My stricture was at the terminal illeum. 3 years later its back again, spoke to a different consultant and he said looks like I might need another operation, again first thing I asked do I need a bag this time. He said NO
My bad part is where the small joins onto the colon, he said the surgeon will just chop the stricture out and then pinch small piece of colon and reconnect.

Hope this helps

 

[hayper88]

It sounds like you are miserable and I'm so sorry to hear that! I'm also surprised your dr gave you a definite no about the bag, however I'm not surprised bc they do absolutely everything for that not to happen and it should not happen with a simple resection. I had a bowl resection about 6 weeks ago and my quality of life has improved unbelievably. I had a 10 cm stricture at the terminal illeum resected and another 6 cm section resected a bit higher up in the small intestine. (I also had a suspected fistula at the sigmoid colon that the surgeon placed a staple). Before surgery I was definitely in a flare with major pain/discomfort/exhaustion. That said, I did not qualify myself in the "surgery" group. My dr said I had absolutely no choice and needed surgery to get everything straightened out. I am thankful every day that I had to do it.

The surgery and recovery is hard (and mean and miserable) but we've already been through so much with this damn disease! Plus it gets a little better every day. I spent one week in the hospital and another two weeks on my mother's couch. The diet isn't terrible--you will most likely be on a low fiber diet after release from the hospital.I am a graduate student and returned to classes (half day) at week 3...boy was I exhausted! At 6 weeks out I am beginning to experiment with different foods (I was already experimenting at 3 weeks though!) and trying to exercise, however exercise is still difficult. I won't lie, this is a long recovery but so far, it has been worth it.

 

[jaggartini]

Hi Johnatron,

Sorry to hear you are in so much pain. We can all understand it; to be honest sometimes I compare it to child birth (I've been there and done that), so that's saying something. This illness hurts like hell.

I'm on the surgery path but I suffer from UC. I am petrified of "the Bag", but I'll have to have it for 3 months until my j-Pouch (internally) recovers so if I do the surgery path then it's something I have to deal with. My medical options (well drug wise) are coming to an end as nothing is helping.

You have youth on your side, you may recover a bit quicker than some of the rest of us.
I've done lots of research, spoken to lots of people, asked a million questions to my gatsro. I am seeing a surgeon, even though I haven't said yay or nay; just to ask them a million questions - perhaps you could do that too; get a better understanding of it all. I've also seen a stoma nurse (who deals with the external bags), she explained everything to me. I must say I found it very confronting and a bit hard to deal with BUT 2 weeks on from that appointment I'm glad I did it, because if I wake up from surgery one day with a bag then at least I'm a bit more familiar about it all.

I do hope the pain subsides, have you got something for pain?

 

[kat-y]

I got a resection abt 18months ago, 5 weeks after being diagnosed ( Crohns) and although it's major surgery the really bad bits are removed and it gives you a chance to reduce all the symptoms you are suffering so badly with right now. As it's the last option medically they are very conservative in how much is taken and you should heal well esp as you are young and otherwise well. It's a scary prospect but your body gets very weak when you are sick for so long so sometimes it's the best course of action sooner rather than later, hopefully then you get the worst of it away. I am on Azathioprine now and in remission with only mild symptoms from the inflammation that's returned . Much better compared to pre surgery so am grateful for it ! Hope it goes well for you...

 

[mozzie85]

Hi Johnatron, I know it's not quite what you asked, but you mentioned you were in 'so much pain'. I've been in a similar situation and it took MONTHS for medics/surgeons debating and referring for loads of scans etc before they made a decision, for me it was surgery. One thing I regret is that I didn't jump up and down about getting decent pain relief. Once I DID get some good pain relief (in my case 100mg slow release tramadol twice a day) my quality of life got SO much better and I was better able to prepare myself physically and emotionally for the possibility of surgery.

Hope things go well for you though.

 

[Johnatron]

Hey everyone, thought I would update on the situation. I know it's been weeks since I posted this thread but ironically, the early morning after the night I posted this, I woke up with agonising pains and extreme nausea. I ran to the bathroom and sorry to say vomited up fecal matter. I was definitely scared at that point. My parents phoned an ambulance and I was taken to hospital where after a scan was told I had a blockage and surgery was to be done the following day. Blah blah blah, I had the resection and everything went well (bar being in intensive care for a while after as I was hard to wake up after the anaesthetic.) The recovery process in hospital was horrible. I was so miserable being there day in and day out with a drain in my stomach, catheter in, oxygen tubes up the nose, the tube through the nose and down the throat and also the obvious drips. I was on morphine for a while but eventually taken off. I'm pretty sure it was a week I stayed in hospital before I had a bowel movement and was allowed home. Been recovering since and my scar, which is quite large, is healing nicely. I can already feel the relief of not having the Crohn's pains anymore. It's like living a new life. Hopefully in the next few weeks I'll be back to my regular self but I know for sure that surgery was the right thing to do for my case.

 

[hayper88]

i am SO happy for you and the relief you are already experiencing. best wishes with your recovery! you can do it!

 

[DustyKat]

What a fab update! YAY!

I'm so glad the surgery went well and you are now starting to feel on top of things.

Both of my children have had surgery and have had wonderful outcomes, I wish the same for you! :hug:

Dusty. xxx

 

[bkbigfish]

Great to hear! I had small bowel ressection 1 year ago and I am in a new body! Recovery wasn't to bad, as I had been sick for months with a leaking abcess through my lower right side. I was up walking 8 hrs after surgery and I know this helped with recovery. I am very active, I ride mtn bikes 5 days a week and have never felt stronger. You didnt have time to wory about surgery, that is good, I was nervous for months and all for nothing. Good luck, Billy

 

[Johnatron]

Another update guys. I've recently been getting the familiar gurgling noises and slight uncomfortableness on the side I had the diseased area which was taken out. Is this normal? Is the bowel just healing? Or is this a sign of disease still. I had a consultation today and my doctor said in 6 months time I'll have another colonoscopy but I really can't take anymore procedures. I just want to cry right now. Especially at the thought of having to drink that disgusting Klean-Prep! Blergh