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Crohn's Disease Forum » Surgery » Stoma Subforum » Surgery...Will I? Won't I? I'm having a wobbly!


01-31-2013, 12:07 PM   #1
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Surgery...Will I? Won't I? I'm having a wobbly!

In the modern day of social media, it is hard to believe that this is my first online posting of any sort. I guess that might be one of the few positive things to come out of having IBD, but this posting is out of desperation and hope of making the right decision...all thoughts, experiences, ideas welcome.

Symptoms/Meds;
I'm 36 years old. On/off IBD symptoms for probably 10+ years...1st colonoscopy and diagnosis of indeterminate colitis 2009. 2nd Colonoscopy 2011 no inflammation observed. 3rd Colonoscopy Oct 2012 - patchy, confluent throughout large and intestine biopsy's more indicative of UC than Crohns- The Symptoms - Busiest in the morning 3-6 visits mainly D, at best loose formed. At worst 8-10 visits all D with cramps, bleeding and shivers. Worst symptom for me is lethargy and general fatigue. Been on Mezalazine /azathioprine/ Mercaptopurine/ Prednisolone/ Infliximab/ Adalimimab with mixed fortunes but longest period of feeling "normal" 10 days in last 2 years. Calprotectin scores often raised between 600-1400 but ESR blood tests generally normal and not anemic.

The situation
Saw my GI consultant in December, whom I hugely respect. He said having exhausted all meds, last biopsy's being more UC than Crohn's and still feeling below par, I should see the surgeon. I have met with him (surgeon) and the stoma specialist and I am comfortable with the proposed plan for 2 stage Ileostomy and "J" pouch planned for 22nd Feb. I was borderline excited at the prospect of a potential cure.

My Dilemma
I stopped taking the Humira two and half weeks ago. Energy level's have improved (albeit kind of forgotten what it is like to feel "normal") and only going twice a day with no cramping! My concerns are that I know the meds don't agree with me but I might now hitting a period of remission with about 3 weeks before I am due for life changing surgery.

My Concern's and questions to fellow IBD sufferer's;
I know the decision is ultimately mine and only I know how I feel but I welcome thoughts on whether I delay the op and see if I make it back to feeling "normal" or whether infact I am delaying the inevitable and the ultimate relief of the procedure is worth just biting the bullet and going for the cure? As a former pro rugby player and generally/formerly very active, with 3 young, adorable children, is this worth going for to finally get my "spring" back or have faith that I may finally going into remission!?

Foot notes;
1)I class my self as lucky when I read how miserable and painful others have CD and UC hence do I persevere to continue waking every morning wondering how I will be that day or take the op.
2)When I asked my GI guy what he would do knowing my case - he said he would have it out tomorrow and take an Ileostomy but with this symptomatic change I wonder whether this would change his mind. I have put a call in to him and I await his thoughts also.

I am not an straightforward case but hopefully not an awkward customer!

Thanks for any thoughts / advice / guidance
01-31-2013, 01:10 PM   #2
Ihurt
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I am hoping others will chime in that have more experience with having UC. I am not even dx yet, I am still going through the whole run around.

One thing you noted was that you felt better after you stopped the humira?? Maybe the humira was making you feel worse?? I mean have you tried all things, like diet changes and such already?? I mean surgery is a HUGE step and in irreversible and there are risks with any type of surgery. That being said, surgery when absolutely needed can be life changing in a good way for some. I mean it is the ultimate cure for UC. I believe 2thfairy on here had her colon removed and it greatly helped her. Everyone is different and will react differently.

I guess it all depends on how you feel. I mean if you are feeling better right now, then you could always wait on the surgery. I mean you can have the surgery anytime if things were to get worse again. In any event, I know I was likely not that much help,and hopefully others will chime in.. I wish you the best in whatever decision you make!!













In the modern day of social media, it is hard to believe that this is my first online posting of any sort. I guess that might be one of the few positive things to come out of having IBD, but this posting is out of desperation and hope of making the right decision...all thoughts, experiences, ideas welcome.

Symptoms/Meds;
I'm 36 years old. On/off IBD symptoms for probably 10+ years...1st colonoscopy and diagnosis of indeterminate colitis 2009. 2nd Colonoscopy 2011 no inflammation observed. 3rd Colonoscopy Oct 2012 - patchy, confluent throughout large and intestine biopsy's more indicative of UC than Crohns- The Symptoms - Busiest in the morning 3-6 visits mainly D, at best loose formed. At worst 8-10 visits all D with cramps, bleeding and shivers. Worst symptom for me is lethargy and general fatigue. Been on Mezalazine /azathioprine/ Mercaptopurine/ Prednisolone/ Infliximab/ Adalimimab with mixed fortunes but longest period of feeling "normal" 10 days in last 2 years. Calprotectin scores often raised between 600-1400 but ESR blood tests generally normal and not anemic.

The situation
Saw my GI consultant in December, whom I hugely respect. He said having exhausted all meds, last biopsy's being more UC than Crohn's and still feeling below par, I should see the surgeon. I have met with him (surgeon) and the stoma specialist and I am comfortable with the proposed plan for 2 stage Ileostomy and "J" pouch planned for 22nd Feb. I was borderline excited at the prospect of a potential cure.

My Dilemma
I stopped taking the Humira two and half weeks ago. Energy level's have improved (albeit kind of forgotten what it is like to feel "normal") and only going twice a day with no cramping! My concerns are that I know the meds don't agree with me but I might now hitting a period of remission with about 3 weeks before I am due for life changing surgery.

My Concern's and questions to fellow IBD sufferer's;
I know the decision is ultimately mine and only I know how I feel but I welcome thoughts on whether I delay the op and see if I make it back to feeling "normal" or whether infact I am delaying the inevitable and the ultimate relief of the procedure is worth just biting the bullet and going for the cure? As a former pro rugby player and generally/formerly very active, with 3 young, adorable children, is this worth going for to finally get my "spring" back or have faith that I may finally going into remission!?

Foot notes;
1)I class my self as lucky when I read how miserable and painful others have CD and UC hence do I persevere to continue waking every morning wondering how I will be that day or take the op.
2)When I asked my GI guy what he would do knowing my case - he said he would have it out tomorrow and take an Ileostomy but with this symptomatic change I wonder whether this would change his mind. I have put a call in to him and I await his thoughts also.

I am not an straightforward case but hopefully not an awkward customer!

Thanks for any thoughts / advice / guidance
01-31-2013, 01:30 PM   #3
Grumbletum
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Well, that is a dilemma indeed. It will be very interesting to hear what your GI has to say. I was referred by a local GI to hospital on the mainland for a resection last year. By the time I got there, my symptoms had improved somewhat on Pred and Azathioprine and the surgeon I'd been referred to advised me try Infliximab and said it was best to try to avoid surgery for as long as possible.
It's also interesting what you say about forgetting what normal feels like. It's only now after surgery that I realise I probably wasn't in full remission after the 3 Infliximab infusions I had.
I'm just wondering too, do you have a special diet that you stick to to help keep symptoms under control?
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02-01-2013, 04:57 AM   #4
Terriernut
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Very interesting! But the main thing is, while you are feeling better, what is going on inside of the colon.

From your post it sounds like you haven't had any surgery yet, not even a resection? What does the colonoscopy look like? That is the key, if the colon is in a bad state and getting worse, then surgery is a good option. Regardless of symptoms. Sometimes we can be feeling very good, but inside damage is being done.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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02-01-2013, 09:05 AM   #5
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Terriernut/Grumbletum/Ihurt,

Firstly, many thanks for taking the time to respond as all your comments are gratefully received and hugely appreciated.

In answer to some of your questions;
I tend to avoid too much dairy as I get quite bloated/windy particularly when flaring. That aside, I have a very balanced diet courtesy of my amazing wife! I have experimented with many different single variables in the diet and like everyone there are some things that are easier on the tum than others but nothing that would maintain parity/remission.

I have not had any resection's to date as my recent colonscopy (when not flaring) revealed no obstructions but moderate, patchy, ulceration throughout the whole colon but clear at the terminal Ileum. This is part of the confusion for the diagnosis whereby the biopsy's matched off with the symptom's sort of collaborate and yet contradict a definitive diagnosis either way.

Terriernut (loving the name!) - My GI and surgeon have planned the op based on my problems being more systemic rather than total failure of the colon. The chronic grumbling of the bowel coupled with unabating lethergy have been more problematic than any profuse bleeding. My GI is possibly more frustrated than I am and is almost apologetic for where I am at the mo!

That all said, I may have posted too soon yesterday as today already been three times with cramping and not quite as tipper as I felt yesterday....Gee whiz, public moaning is not something I do but I guess you guys all know how broad the spectrum of ailments can be with IBD and how frustrating this is...
I'll see what the weekend holds.

Thanks again guys and hope you are all currently in a good place.
02-01-2013, 09:30 AM   #6
Terriernut
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Hmmmm, patchy inflammation tends to lead to crohns. I have crohn's colitis, so far, nothing wrong with me from terminal ileum upwards, just the large bowel.

Many people with an original diagnosis of UC have their diagnosis changed later to crohn's.

Sorry to hear your symptoms have returned. Perhaps bowel rest would be a good option for you at present? Liquid diet maybe?

Or when you speak to the GI or surgeon, a temporary ileostomy to completely rest the bowel?
02-01-2013, 10:22 AM   #7
Dukeis
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I agree with Terriernut that patchy inflammation tends to lead to Crohn's. I was first told I had UC. Then it was changed to Crohn's, one of the reasons for the change in the diagnoses was patchy inflammation in the colon.

My disease has always been limited to my colon. I'm hoping it stays that way also, because I'm scheduled for a Proctocolectomy next month. My GI told me I may have a choice of a J-pouch, but when I met with the surgeon on Tuesday he told me he would never do a J-pouch on a known Crohn's patient. He told me he has done cases where it was thought to be UC and did the J-pouch and it later turned out to be Crohn's. He did tell me they have had pretty good success treating the Crohn's in the J-pouch and told me he has only removed one J-pouch. Also both my GI and surgeon have told me that they have seen very few patients that have had Crohn's only in the colon have problems with it again in another area after their colon was removed.
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02-01-2013, 11:07 AM   #8
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Really interesting stuff guys, thank you.

A temp Ileostomy is news to me as this has never been an option, only total colectomy, I will certainly ask the question - Thanks.

My symptoms too, are confined to my colon having had the all clear on the small bowel MRI. I guess my dilemma is such that I want the colon to be bad enough for the pathologist to give a definitive diagnosis post op, so that the J pouch is an option, hence do I delay until I am in bits again or op whilst in reasonable health? They seem fairly confident quoting only 10% that it is Crohn's (not sure how they arrived at that figure though).

Terriernut, you state crohn's colitis. Have you had resections / colectomy? Did you start with patchy colitis or have you had constrictions

Have just spoken with my GI who has said to call him next week with an update. He reckon's if I continue to stabilise without meds, then I should look at putting the op back as I can always revisit the op but can't put the colon back!!!!

As someone who is ordinarily decisive - I have never been so all at sea...totally out my comfort zone.

Thanks again guys, much appreciated
02-01-2013, 11:11 AM   #9
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Terriernut...just read your footnotes...wow..you had it well tough, no need to reply to my question of what happened to you. Just hope all is good with you now....x
02-01-2013, 11:17 AM   #10
Terriernut
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The only surgery I ever had was the emergency surgery. Perforated sigmoid, due to strictures from scar tissue and inflammation, as well as a fistula through the left fallopian tube.

No doubt they would love to remove my colon, however I'm rather partial to it! Even though it's a pain!

So, I have had 'Stan' for two years now. He should've been reversed some time ago, and I will be battering my very negligent GI for that this month in fact.
02-01-2013, 12:16 PM   #11
Terriernut
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I was replying while you were! I am fine, I'm a tough nut. I was still working and being 'normal' during all of it, albeit doubling over in pain frequently. I was hospitalized in Nov 2010 for it, and didn't want surgery but to be treated. Lasted til the 20th of December when I had to go to A&E with a 150bpm heart and seriously septic. Lovely times!

There are options available to you of course, and it should be discussed, a temp ileo. However the fact that you have tried so many meds is a bit of a worry. You may find that a temp ileostomy does you a world of good! One thing I do advise people to do is NOT what I did and wait for an emergency.
02-01-2013, 02:07 PM   #12
Trysha
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Hello Totus vel nusquam

Ipsa scientia potestas est------knowledge itself is power!
Are you a Latin scholar or a fan of the movie? (yorgi)
Not that it is of concern in these pages.
It is a big decision for you and one in which your GI is pivotal.
A similar option was given to me and I gradually went into a remission, not that it lasted , but long enough for me to put off any surgery.
My crohn's is in the left colon., and currently I have just received the second loading dose of Remicade. It does seem to make things a bit better, time will tell.
In your circumstances I think maybe a wait and see approach if you feel you are going into a remission.
As you have said once the colon is gone there is no backtracking.
If it turns out to be Crohn's it could lead to further difficulties down the road.
It is good that your GI is taking a conservative approach.
It is your body and you know how you feel physically.
Per aspira ad astra------through difficulties to the stars
Totus vel nusquam----all or nothing--
Hope things turn out well for you.
Feel better soon
Hugs and best wishes
Trysha
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