Husband has crohns

[NettyMe]

Hi there,
a little introduction ... I am Netty, and my husband has Crohns... He has been really ill for over a year now and he us still really suffering. He has been admitted to hospital 3 times in the last 4 months, suffered with fissures, abcesses and currently has 20 plus mouth ulcers. He's lost 2 stone in weight and is constantly tired. He is now on Crohns drugs and has been for 2 months after being weaned off steroids but his mouth ulcers have been the worst ever and he has recently had another abscess removed... I am at my wits end now and I don't feel like we have had any support or care... Is this going to be what he has to look forward to or does it get better? Please help :-( x

 

[gypsigirl28]

Hi Nettyme, Welcome.... I am glad that you found the forum. If support and advice is what you are looking for you came to the right place.
I cannot answer your questions but I am positive some else will be coming by to help you out. I just wanted to welcome you. I hope you stick around.

 

[Lisa]

What types of drugs is he on?.....sorry to hear he is doing so poorly.....I'm sure there will be some more responses before long....

 

[NettyMe]

Thank you Rosemary, I am so glad I found the forum. sometimes I lay here at night thinking about what were doing wrong? Is it the diet? The drugs? I feel so lost without anyone giving us advice. We are waiting an MRI scan now which was advised by the surgeon after the last hospital stay. We only found out from our practise nurse that my husband should be having blood tests every 2 weeks as his crohns drugs doseage is so high. Nobody told us this. I feel like we are just forgotten about as soon as we leave the hospital. He was waiting for 8 weeks to be admitted to hospital for eua suspected fissures. In the meantime I had to rush him to a&e as he was in that much pain. It turned out he has 2 fissures and 2 internal abscesses. I really feel like we need this under control as we have no quality of life at the moment . My husband is in constant pain and I feel helpless :-(

 

[NettyMe]

He was on prednisalone (sorry if spelt wrong) for 6 months and now he's on mesalasine? Does that sound right? He takes two a day.

 

[Crohn's 35]

Hi Netty, welcome to the forum! Great information here and support, some are parents, spouses and relatives that come here and we try to help as best we can. As pasobuff asked what kind of medications is your husband taking right now and how much? Some meds work better than others and depending how severe, where and what kind of problems. Mouth ulcers are so common, but I rarely get more than one. Sometimes it can be the meds or simply a toothpaste or he could have Crohns in his mouth. Let us know his meds and his med history, we can help you better that way. I see by your post you are from the UK? BTW there is nothing you did so never blame yourself ok? Hugs to you both!

 

[NettyMe]

Thank you for your support. It is 1.15am here so first thing AM I will find out exactly what his meds are and post an update. I am so glad I found the forum I feel better already. Xxxxx

 

[Crohn's 35]

Sorry you posted your thread same time I did. 5 ASA that is it???? That is like Pentasa or Asacol, used mostly in mild cases, and most take 2 tablets 4 times a day, which is 3000 to 4000mg a day. 2 most likely isnt enough. When you are on Prednisone it tapers and you get pain again but you have to be on something a bit stronger to keep it at bay. Has his doctor not mentioned Remicade? It is expensive but if you have coverage it could be a matter of a better life for him! He needs to be aggressive with his Gi, he shouldnt be in this much pain!

 

[NettyMe]

He is on 1200mg of mesalazine twice a day. He is going back to specialist tom morning .... Is there anything that anyone can suggest that would be better? He doesn't have the cramps but he has had treatment for anal fissures (Botox injection) had 4 abscesses ( 2 internal) in last 12 weeks and 20 plus mouth ulcers at present.

 

[Crohn's 35]

Best thing to try is Remicade or Humira, he really needs help fast. Good luck, and let us know ok?

 

[NettyMe]

Jettalady: thank you and I will let you know how he gets on xxxx

 

[mia]

Hi Netty. I believe mesalazine can cause mouth ulcers ( it's a good idea to find out about all possible side effects- the internet is a good source, as it can sometimes be confusing and hard to tell if it's the Cd or a med side effect. Your husband is in a really rough patch right now. Make sure that the checks for blood counts, liver, kidneys etc are being done- I just tell the doctor I expect checks followed as recommended (and I usually bring in a print out for the protocol from the internet). Lots of people here will no doubt have some good med suggestions for you. Hang in there. This is a good place to ask questions, and just read and learn in order to work out what will work best for your husband.

 

[Dexky]

Hi Netty, welcome!! Is your hubby taking any vitamin supplements? My son was having what some call ulcers on his tongue and they seem to be helped since he started taking a B-complex vitamin. He also is careful to brush his teeth regularly and uses a mouthwash that contains hydrogen peroxide. I hope you all can get his crohns under control and get your life back!!! Good luck!!

 

[Astra]

Hi Netty
and welcome

Are you in the UK?
so sorry you're feeling so helpless, but all is not lost, there are wonderful biologics out there, Humira and Infliximab (remicade) the meds you're husband are on act as a preventative measure, to maintain and ward off future flare ups. Useless if he has inflammation.
Push for a second opinion, further tests, get yourself genned up on other meds and arm yourself with ammo, keep a journal of symptoms, write all your questions down, document everything, Persist & Insist!! Knowledge is Power!
He shouldn't be in pain like this, left to his own devices, give gastro a ring today, make that appt.
I say all this cos I was fobbed off for over 15 years, if I knew then what I know now, perhaps I wouldn't be in this state, we didn't have internet or forums way back then!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[DustyKat]

Hi Netty and :welcome:

I'm glad you found your way here. So sorry to hear that your husband is having a difficult time. You have received excellent advice from others regarding the drugs and the practice nurse is correct in saying that regular monitoring of the blood is required when taking these type of medications. I hope your hubby gets some relief soon and please keep us posted on how you are both doing.

Welcome aboard!

Take care,
Dusty

 

[NettyMe]

Hi All, a quick update;
My husband finall got to see the specialist himself (its usually a different trainee every time) and finally we are seeing progress! He has appointments for his MRI another eua and blood tests every 2 weeks. The specialist no says he has Crohns in his mouth and soon he will be going on new medication so fingers crossed he will start to feel human again... He is getting another abcess.... this will be his 5th one that will need draining, anyone know why this happens or suffer from them also?

 

[worriedsick]

do the drugs used give any serious side affects?