Specialist wants to put husband on Azathioprone.

Hi

This is in regards to my husbands health.

Last yr, he was diagnosed with Crohn's colitis.

His sister has really bad, symptomatic crohns and his brother has asymptomatic crohns, but is managed with sulphsalazine.
His other sister seems to have chronic fatigue/anaemia etc, and is often poorly, but hasn't ever been scoped....we find it really odd that at least 3 out of four siblings all have crohn's but its not apparently genetic?

My sister also has bad crohn's and has suffered with it for the last 30 yrs, so i know the drill.

so a brief rundown:
DH is 42 yrs old.
- inflammation was seen 7 yrs ago throughout my husbands whole bowel on a scope (he had his first scope for a mildly dysplatic adenoma, but has never had one since- hence them subsequently finding the inflammation on a scope.)
- hospital said imflammation was probably due to having a vomiting virus 12 weeks earlier and never followed up on it.

-fast forward to last yr, when at his last colonoscopy they found inflammation thru the entire length of his bowel and told him he had colitis, subsequently changed to crohn's colitis.

-he has NORMAL bowel movements

-never any pain, or diahorrhea etc.

-The specialist said it seems to affect him with ulceration, and he is lucky he doesn't get strictures, pain etc...

-he DOES often need to take iron tablets as he becomes anaemic

-he FEELS like he has had chronic fatigue for the last yr , and the specialist said it would be a result of the crohn's and understandable when he looks at the dips and troughs on his blood test patterns.

- he has been taking ASACOL for the last year.
started off on 6 aday, then dropped it to 3 when he seemed to imporve, which then got worse, and they have put him back on 6 for the last 6 weeks.

-However at his followup visit, looking at the results of his blood tests and inflammation levels, it has actually gone up from 19 to 28 over the last 6 wks since he was taking the extra 3 asacol a day, instead of improving, so the specialist believes that asacol is no longer a worthwhile option for him, and said he thinks he needs to start taking Azathioprone.

remembering that his only OBVIOUS symptoms are that his iron goes down, and he suffers fatigue now,( not the classic bowel problems others like both of our sisters suffer).
We recognise the long term risks of leaving inflammation unchecked, especially when it involves the whole length of the colon,yet looking at this drug online- the risks seem really really scary, and despite what symptoms he does have to cope with atm, it sounds like this drug can give you even more things to complain about, including even worse fatigue!

I read someone elses thread where they were told this drug is "end of the line" for him, yet it will only be the 2nd thing my dh will have tried.

We will be following up with the specialist in a week again, as they are still waiting for the poo inflammation test results to come back....(not sure what that one is called)

I don't even really know what to ask?

He is aware of FODMAPS and how some of those foods affect him and the specialist talked about how some patients have had great results with just manuka honey, so although that is a fodmap food, its worth trying....

although the asacol doesn't seem to be working to keep the inflammation at bay, we are scared of trying this new drug and not sure what other options there might be to try...even something way out?


does anyone else have crohn's that exhibits like he does?
who was diagnosed later in life?

any suggestions?

Hello, I'm sorry that I've missed your thread until now.

Asymptotic crohns isn't overly common but it does happen. I totally understand the reluctance to use more heavy duty meds but if your husbands inflammation is rising then the current plan isn't working.

It's important to remember that everyone is different and each doctor has a different approach to treatments. The other person you speak of my have tried the biologics already, although usually a med like Aza would be used before humira or remicade. It could also be that the other person is allergic to the other meds etc.

On the other side, I tried pentasa (similar to what your husband has been on) and then progressed to Aza, so it's not an unusual route and I'm now on another immunosuppressant.

Although your husband doesn't have many noticeable symptoms this does not mean the disease isn't serious. There is no way of knowing how severe the internal damage is without scopes and if there is sufficient damage to cause nutrient deficiencies then I would say that the current treatment plan isn't doing enough to control things.

I do understand that the medication seems scary but it is important to understand that the risks are relative. Compare the risks of the medication with the risk of untreated crohns (narrowing, perforations, severe malnourishment etc) and it becomes clear why these meds are needed. Remember that what they describe in those leaflets is only a 'maybe' and your husband will be closely monitored to check for adverse effects - most of which are reversible *if* they do happen.
At any rate, the immunosuppressants used as a long term med are much safer than recurrent high doses of steroids which your husband could be reliant on if the condition isn't controlled now.

Thanks for your reply.

Its difficult when he doesn't have the "classic crohn's symptoms" such as pain, diarrhea, bleeding ,blockages etc, because apart from the fact that he has been anaemic, and it obviously has severley affected his energy levels,this last year, as he has found it difficult to cope, whereas normally he is superman.
When he is scoped, they can see the inflammation and it is throughout his WHOLE colon.

My sister who has had it for 30 years, has had the whole gamut of symptoms including having the ileum removed and now has to have additional nutrients via IV, and it has greatly impacted her quality of life.

To read people have had tremendous fatigue on the drug is worrying, as he is only just coping now.

He has normal bowel movements every day, and i don't know if this is helped in part by loosely following Dr John Mcdougalls vegan wholefood diet or not?

What we were wondering is what harm could happen if he said to the specialist that he wanted to delay trying any drugs until he tries a few dietry type things to see if it improves, checked by the response on bloodtests?

Before he actually "knew" he had crohns (and it was actually diagnose 2 yrs ago, not one like i initially said!) we didn't know anything was wrong by his health, as he was great, but we do know now looking back that he had that inflammation 7 yrs ago, as they saw it on a previous scope at a different hospital down in london, and when we asked why he had that, they said probably just because he had norovirus a few mths previously, and never followed up on it, so it HAS been there for some time.
But when they picked up on this scope two years ago, he didn't start getting the fatigue and anaemic until he was coincidentally put on drugs for the crohn's...before then he seemed fine.

So if he went off any drugs and then tried this for 6 weeks, and then that for 6 weeks...like more natural things to see if it reduced the inflammation, could that be a good idea, or a really bad idea?

you just don't get much time with the specialist to ask all these questions as they are so busy, so we thought if we thought about things beforehand we could use the time more wisely to ask about things in the appt....


What we don't want, as you said, is for his crohn's to suddenly start exhibiting even worse symptoms, but surely there is something out there that actually TREATS the cause, rather than just manages the symptoms?
surely?

I would recommend trying it versus risking the disease go unchecked. It kept me in remission for many years.

The disease affects different people in different ways. One of the risks with not doing anything or not taking medication is that you are not able to see things getting worse inside the intestines until it it too late (i.e. severe stricturing or perforation).

That amount of inflammation needs to be addressed and unfortunately I'm not sure that diet alone is going be enough to help that.

Unfortunately comparison of crohns with other patients doesn't really work, it's a very individual condition and it affects everyone in different ways. I have a step cousin who didn't have a clue she had it until it put her in intensive care.

While many people do have fatigue on the medications, many more will have it from anemia and unless the inflammation is addressed it's very likely that your husband will keep suffering from this.

Honestly, that is something that you need to discuss with his medical team. All I can say is that crohns can be fast moving and it sounds like your husband has quite wide spread inflammation. If it's allowed to keep progressing then it could lead to irreversible damage.

It probably is a coincidence of the fatigue hitting at the same time as starting the drugs.

Personally, I would think that it's a big risk to take, as even in 6 weeks a condition like crohns can change a lot. So if you did 2 different things for 6 weeks each, that's 12 weeks without medical treatment. Only you and your husband can make the choice about this, but it's important to be aware that even if he isn't feeling ill, he could have a lot of internal damage.

It's a good idea to write a list of concerns and questions before going to the specialist to make sure you're getting the most out of the appointment.

The medications your husband is being offered aim to stop inflammation by controlling the immune system. The specific cause of crohns isn't yet known but there are many theories which invole an over activity of the immune system in some way. So by lowering the immune system, it controls the over active response and stops the immune system attacking the bowel. So it does far more than manages the symptoms, it allows a real chance to stop or slow the damage and get people into remission. Unfortunately there is no sure way to control crohns and it is not yet possible to cure it, so management is all they have to offer us at the moment.

hawkeye said:

I would recommend trying it versus risking the disease go unchecked. It kept me in remission for many years.

The disease affects different people in different ways. One of the risks with not doing anything or not taking medication is that you are not able to see things getting worse inside the intestines until it it too late (i.e. severe stricturing or perforation).

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so hawkeye, your sig says you're not currently on any meds?

so is what you're saying, that if you take a med and it does put you in remission, you can then stop taking it, rather than just stay on it your whole life?

thanks valleysangel92.

i suppose we were kind of feeling that its not as serious if its not making him as ill as say my sister or his sister are!

his inflammation levels have actually gone up in the 6 wks btwn blood and stool tests.

my sister was on aza for years she said, but is now having results from the GAPS diet.

we will chat to her when we can, but she lives overseas, and she has been very tired, so timing when to chat is tricky atm.

the other concern is how it lowers your immune system to stop progression of the crohn's- but on the flip side, his father has aggressive metasticised prostate cancer, so then you fear what lowering your immune system to do one thing, might spur on another?
we are very lucky that in Wales, uk, all our prescriptions are free along with the nhs healthcare system.

it seems so unfair to read threads on here where people are struggling to afford meds, so not only are they afflicted by poor health, which is awful, but also the financial burden it brings too.

Unfortunately it just doesn't work like that .

I completely understand all of these concerns but I think that it's important to at least consider trying the medication, there is another called mercatopurine which works the same as Aza but at a lower dose that you could discuss if it would be something that made you feel more comfortable, just don't completely dismiss it. Also remember that the negatives are always reported more than the positives so what you read can be very disproportionate.

I'm in Wales too, and so understand the health system you're dealing with. It's very usual in the UK to offer the immunosuppressants after the Mesalazine types haven't controlled things.

Take a look at the CCUK (nacc.org.UK) site and read through their information sheets. It may help you to see which options suit your husbands situation the best.

The diet stuff doesn't,t work on its own,it be suplementary to medication but I would and do pop the pills and try to be careful with diet.the diets are so restrictive that very few people can maintain them long term.good luck

asymptomatic crohn's said:

so hawkeye, your sig says you're not currently on any meds?

so is what you're saying, that if you take a med and it does put you in remission, you can then stop taking it, rather than just stay on it your whole life?

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You may not be able to stop taking it once you are in remission, They also use Imuran for a maintenance medication to maintain remission and keep things at bay.

I have not been on any for a year post surgery. I had a resection last February to remove a stricture and the scope in November was clear (no inflammation) so my GI is not putting me back on medication until the need should arise.

You've gotten great advice from above. The disease is different for everyone. My son's disease is asymptomatic, regular bowel movement, no GI pain and his blood work doesn't show his inflammation(it doesn't for some people). Yet, simmering inflammation led to a bowel resection. The surgeon was astonished by the severity of the affected area because he was experiencing no symptoms. CD can be insidiously silent.

Clash said:

CD can be insidiously silent.

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The whole discussion of being asymptomatic reminds me of a point my GI made once - someone can look and feel fine and have a scope that looks awful with lots of inflammation.