Recent resection- still flaring. Help please

[McBreidi]

My husband Peter was diagnosed with Crohns disease not quite 2 years ago. He has been on the medication wheel with no progress,the only medication that he responded to was IV steroids. Peter had a resection in august this year resulting in an ileostomy and only his rectum remaining. The doctors told us that the resection would settle things down for a while and they would be able to achieve remission. 5 weeks after the resection he had another flare, this flare up didn't settle and has resulted in him being hospitalised once again. A flexi scope was performed on Tuesday showing his remaining rectum is severely inflamed and diseased.

Now the doctors are saying that if they perform a reversal this will settle the rectum down. This will be a 3 part operation, cut down the middle as they are unable to do it key hole. The doctors are not very good at communicating with us so it is difficult to be able to understand how this will help. Our other gastro doctor does not agree that this is going to work, in fact he thinks that the best approach would be to remove the remaining bowel. Peter had already accepted the idea that the ilieostomy would be permanent anyway.

Has anyone ever been through this? did it work for you?

My biggest fear is having the reversal done and then having to have a full colectomy if this doesn't work.

 

[McBreidi]

any advice would be appreciated, good or bad even if you haven't experienced this.

thank you

 

[DJW]

Hi and welcome to the forum. I'm afraid I have no advice - sorry. I have had an ileostomy for 28 years. It gave me my life back. Sending you my support and best wishes.

 

[McBreidi]

Thanks DJW.

The doctors have said that my hubby has Diversion colitis, he has to make the decision between having a reversal with a J Pouch or having the stump removed and keeping the stoma. Peter thinks he is going to choose having the stump removed as he is not keen on the Idea of 3 step surgery and still the uncertainty of having the stump removed and the ileostomy formed again anyway.

I have read a heap of other threads on here and got some good insight. Thank you and we appreciate any advice.

 

[DustyKat]

Hi McBreidi,

We have not had any experience with stoma's or the type of surgery your husband may be facing. :ghug:

For diversion colitis it is normally treated by establishing flow of feacal matter over the area again BUT since a J pouch is the way to do this in your husbands situation it creates a major issue. The issue being that it is generally considered not appropriate to do this type of surgery in someone with Crohn's due to high risk of disease recurring in the pouch. It is a surgery normally done for those with Ulcerative Colitis as there is no risk of disease returning.

I will tag Aussie into this for his opinion on things.

Thinking of you and the difficult decisions that need to be made. Sending good luck and healing thoughts your way!

Dusty. xxx

 

[McBreidi]

Thanks Dusty

The Gi doctors are divided on the diagnosis, some think its Crohns others UC, the histology says Crohns but as you all know it's difficult to distinguish between the two. One of the doctors said having the J pouch would be a good way to tell which one however we are not so keen to gamble.
Such a tough decision.

 

[DustyKat]

Ah okay, I see the dilemma. It surely is a very tough position to be in. :ghug:

Sorry I can't be of more help to you.

Dusty. xxx

 

[ellie]

Is it worth getting another opinion? Are you currently attending a teaching hospital colorectal unit, or somewhere more general?
An assessment from a major colorectal unit in Brisbane, Sydney or Melbourne would probably be worthwhile. Certainly, once pouch surgery, etc, is on the horizon, a super specialized approach could be helpful


HD

 

[Kev]

I don't know if this will be of any help, or just make you more fearful of the future. But, on the off chance... Every time I had an operation, the surgeons were convinced that it would 'cure' me. You see, I had the misfortune of having both Crohns and Ulcerative colitis (the Crohns wasn't initially diagnosed). At best, after a surgery, I would get a short reprieve... 3 months or so... then the disease would come roaring back. to my way of thinking, that should have tipped off the surgeons there was more going on. (than just UC). But surgeons are convinced surgery is the 'only' option. With my options just about run out, I took a chance.. I tried an experimental treatment. LDN. It stopped both diseases cold, and has kept them at bay since November, 2007. However, it is very hard to get a doctor to prescribe it... and... the initial start up on LDN can be very hard to cope with... generally one gets much worse before things turn around. In your case, I don't know if your husband would be in a postion to tuff out that initial period. For me, it meant that I kept enough bowels to live a normal life. I work a physically demanding job, and my disease has not caused me to miss work... or more importantly, miss out on life, since. And, all it took was finding a doctor who was willing to give it a try, getting past the initial rough stage... and having my one little pill a day custom compounded at the pharmacy. I currently pay about 75 cents (CDN) per day for my nightly bedtime pill. And the only side effect I ever experienced from it were some wonderfully detailed dreams.

As I see it... if it is just Ulcerative Colitis, and they remove the colon, problem is solved. But if it is Crohns, the disease will come back. And, although it is extremely rare, if it is both Crohns and Ulcerative Colitis, and the UC is masking the Crohns, any surgery will be only a temporary solution... you can't cut Crohns out, it simply moves and comes back.

 

[McBreidi]

Hi Ellie,
We live in a part of Qld that doesn't have any colorectal surgeons, so we have been travelling to Brisbane. The Princess Alexandra hospital has a GI ward however it is public and we have to deal with very inexperienced doctors. Peter sees a really good private GI but the hospital won't communicate with him so it makes it tough.
As far as we know, there are no other decent colorectal surgeons in brissy.
Unfortunately the Qld public health system is only interested in cost cutting, we have private health but there are limited private dr's here.
I have asked the hospital to try remicade several times but they say it's too expensive, seems surgery is cheaper for them.
We have thought of going interstate, we may have to consider it further.

Kev, that is interesting what you say, Peter is a commercial Painter so his job is physically demanding also, he hasn't worked since June and at this rate I'm not sure he'll ever be able to work again. I will look into your suggestions.
At the moment we are so fearful of the future for him, he just can't seem to get a break, nothing anyone says makes us more scared, if anything it is reassuring that others suffer also.

Thank you all for your responses, you are very helpful.

 

[Aussie]

Hi McBreidi, sounds like a difficult situation. Sometimes it is quite difficult to differentiate between Crohns and UC, as it sounds with your husband.

The remaining large bowel can flare, and sometimes quite significantly, if the flow of faeces is removed (you need the fatty acids in the poo to keep the cells of the colon healthy.) Thus will settle once the flow of poo is returned, ie. the stoma is reversed.

However, if your husband is flaring because of active Crohns, then reversing the stoma may make it worse.

Also, if this is UC, then usually defunctioning doesn't help, and he may benefit from a pouch surgery.

Probably the best course of action would be to eventually reverse the stoma and see if it settles, if it doesn't, get onto Infliximab or Humira.

In the meantime, you could try various enemas that recreate the effect of faeces passing through the mucosa and can sometimes help in diversion colitis.

Best wishes.

 

[Kev]

I am not familiar with the Australian health care system. If lowering of costs seems to be their prime agenda... then they really need to look into LDN. Prescribing it is perfectly legal and ethical... the doctors who do are not violating any code of conduct or breaking any laws. And, I don't know that the exchange rate is between CDN and AUS (?) dollars.. but all things considered, it cost the patient about a dollar a day or less. And, little or no side effects. And with a success rate that compares to any other choice out there. Essentially, anyone who can legally prescribe a drug in Australia CAN write a prescription for this... I've been on it almost 6 years now, and doctors in Norway and Ireland have been treating people with it for over a decade. It is an old established drug with a 'decade' or so old 'new' use... in very low doses. You can't find a 'safer' drug to treat this disease.


As for me... I drive a garbage truck for a living now. I'm rapidly closing in on 60 years of age... and have IBD.. and I work 10 - 12 hours + a day, 5 days a week, 50 weeks a year. I have a helper who does most of the lifting... approx 20,000 kg a day.. but I help. So, despite age and illness, I lift about 2000 kg a day... My body is conditioned so that I go to the bathroom before work, and again after work... vs the 2 dozen plus times a day I used to at my worst. I've been doing this work for over 5 years now, and I have missed a little less than a day's work a year. Pretty remarkable... all things considered. The only medication I take for my IBD is 4.5 mg of Naltrexone just before going to sleep.

I'm going to stop now. This is beginning to sound like a sales pitch. Or a 'miracle' cure. It is neither. Just a safe, effective, almost 'unknown' way to stop this disease in its tracks.