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Crohn's Disease Forum » Your Story » Husband with Crohn's


10-29-2011, 11:24 PM   #1
julip3
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Husband with Crohn's

My husband was diagnosed with Crohn's in June 2011 after over 6 months of symptoms. The diagnosis went from gastritis to IBS to Crohn's. His doctor tried all sorts of treatments including entocort and even effexor (an antidepressant his GP claimed helped "calm the bowel").

My husband didn't involve me at all at first, didn't tell me about certain tests (barium enema), and didn't tell me he had vomiting after all his various preps and barium drinks. I asked him why he didn't tell me, and he said "I just didn't want to bother you with it." That hurt me a bit, because I just want to be there for him and be supportive. He doesn't need to be embarrassed, we are both Paramedics, so I understand all the crazy stuff doctors sometimes put patients through.

After we realized his GI doctor didn't really know how to handle my hubbies case was when he started taking me with him to all his appointments and tests. He must have realized I am there for him and am willing to help him fight for better care. He did admit I usually remember to ask questions he wouldn't have thought of, especially if he isn't feeling well at the time of the appointment.

So I finally am involved, and am much less anxious about his condition, and I think he is too.

He has Crohn's of the terminal ileum with one area of stricture, more than one internal fistula (entero-enteric), inflammation of the mesentery, and mild hydronephrosis due to inflammation compressing his ureters.

He is currently being treated with Imuran, Prednisone (slowly tapering, currently at 15mg), and xifaxan (a fancy antibiotic that stays in the digestive system)

I have not been able to find much info on internal fistulas. His GI (thankfully his new one is wonderful) claims that she has seen some fistulas close with the xifaxan. I am somewhat doubtful, because everyone online seems to say they needed surgery. Any info would be appreciated.

Anyway, the good news is my husband is currently feeling better than he has in a year, and recently gained 15lbs after losing almost 60 since January.
10-30-2011, 12:51 AM   #2
DustyKat
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Hi julip and

I'm glad you have found your way here. It's good to know that your husband has now involved you in his care, he is very lucky to have you...

Both of my children have the same type of Crohn's your husband does and have also had the same complications, hydronephrosis and fistula's. My daughter had emergency as she was undiagnosed at the time but my son was diagnosed last December and had surgery in April. He was seen by a GI, Crohn's specialist and four colorectal surgeons and they all agreed that surgery was the only option for fistula's originating in the ileum. I asked about biologics and they said that there is very little success in closing fistula's in this area using them. He was on Imuran and antibiotics, not the same antibiotic as your husband, and while they certainly stabilised his condition they did not close the fistula's.
I have read about xifaxan and it's success with treating Crohn's but I don't know about it's success with fistula's in the ileum.

While ever your husband is feeling well, gaining weight and his symptoms are under control I would probably stick with his current treatment. On a side note both of my children have had successful surgery and both are in remission, 5 years and 7 months respectively.

Good luck and welcome aboard!

Dusty. xxx
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10-30-2011, 03:35 AM   #3
Grumbletum
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Hi Julip and a big welcome :-) Sorry to hear your husband has Crohns, but it sound like the docs have a good treatment plan in place.
I had an internal fistula (enterovesical) and was told by one GI that I would need a resection to remove that part of my bowel. However, by the time I went for the pre- op, it had healed after a course of antibiotics (Cipro & Metrodinazole.)
Have to say I think I was lucky tho, and it must have been a small, uncomplicated fistula.
Pop over to the Fistula and Abscesses subforum. There's a good bit of information about these nasty complications and other people sharing their experiences.
Hope hubby is on the mend and wishing you both all the best x
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
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Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
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10-30-2011, 04:16 AM   #4
Del
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Hello Julip and welcome to the forum here..
I am so glad the treatment he is on now is proving successful to calm inflammation and hopefully induce remission. Pred among other things tends to stimulate the appetite. Good to hear he is gaining weight again.
You have found a great resource for information about the disease
Take care...
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10-30-2011, 01:16 PM   #5
julip3
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Thanks for your kind words of support.
He is going for a repeat CT mid-November to recheck his progress.
We'll see what happens, we are both trying to stay positive.
11-04-2011, 05:20 PM   #6
Jessi
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Hi and welcome!

The CT is coming up soon, eh? Keep us posted.

Also, here's a link to a support subforum that you may find a lot of comfort in. This was designed for people like you, who take care of an IBD sufferer.

http://www.crohnsforum.com/forumdisplay.php?f=90

Lots of love to you.
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11-08-2011, 05:18 PM   #7
julip3
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Everything has been going great, but my hubby told me yesterday that he has not been tapering his prednisone as his GI recommended. He stopped at 20 mg because he was starting to have some joint pain and "gurgling" after eating. He says he wants to wait until after his CT to go lower than that. He says if the barium doesn't mess him up he might go to 15 mg.

Th thing that really has me worried though is that he is still convinced that his Crohn's is not immune based, and therefore thinks that no form of immune suppressive therapy will ever work for him. Does he not realize that the steroids that have done so well for him work by suppressing his immune system?

Until relatively recently he told me he wasn't truly convinced he had Crohn's at all, that it must be some unknown inflammatory condition. He could give no logical reason for this belief. Even worse, he has never mentioned these concerns to any of his doctors.

He says he wants to go back and try " the anti- inflammatory mess the doctor skipped" I believe he is in denial, but he doesn't really take my position seriously, after all I am no MD.

I am really afraid these beliefs will lead him to be noncompliant with his meds. I just don't know what to tell him.
11-08-2011, 06:02 PM   #8
JMC
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Until relatively recently he told me he wasn't truly convinced he had Crohn's at all, that it must be some unknown inflammatory condition. He could give no logical reason for this belief. Even worse, he has never mentioned these concerns to any of his doctors.
I can sympathise with him. I went for many, many years with normal biopsies and no Crohn's diagnosis and when I was eventually told I had Crohn's it was presented to me as "because we have eliminated everything else". When I am feeling well, I do start to wonder if I really have Crohn's even though I have the scars from a peri-anal fistula and I was told after a recent MRI scan that I have two internal fistulas!
11-18-2011, 01:18 PM   #9
julip3
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Well, he had the CT scan.

One of the stictures has gone away, and the small abscesses from before have also disappeared

However, his fistulas are still there and one of them leads to a 3.4 x 2.6cm abscess.

ACK!!! I thought he was doing so well!!!

Anyway, they want him to go and have it drained as soon as possible and then want him to have a colonoscopy the same day to check everything out.

Double ACK!!!

Needless to say we are both freaked out. Has anyone had this done? I know they put in a needle and draw the fluid out, but does he feel it?
Do they give any sedation or will he be awake?
My hubby already refused the colonoscopy, and says he will refuse the drainage procedure if he will be awake. He did say he would do it if they could guarantee he wouldn't be in any pain.

Please, please help us. We won't be able to ask any detailed questions about the procedure until they assign a radiologist to the case, and that might not happen until next week.
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