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Crohn's Disease Forum » Your Story » Husband has crohns and I'm desperate to help him


04-09-2014, 03:51 PM   #1
Firenze07
 
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Location: Maidstone, United Kingdom
Husband has crohns and I'm desperate to help him

Hi everyone

My hubby was diagnosed with Crohns in 2008. He had been feeling very ill and almost collapsed. We went to A&E and they said it was appendicitis, so removed his appendix and sent him home. Over the next few months he became ill again and the GP referred him to a doctor at the hospital. After extensive tests (all showing nothing) they did a MRI which showed he had crohns in the terminal iliac (near to his appendix) and advised he didn't really need any treatment. He decided to take Asacol daily as he was advised it was a possible protection against bowel cancer. I had just beaten cancer so it was a choice he felt he had to take.

Over the last few months he became very unwell again losing 2 stone. I was so scared it was something nasty and encouraged him to go to the doctor. His consultant had discharged him as he didn't want to go down the steroid route and wanted surgery to remove the small diseased part.
I myself currently have a stoma (radiotherapy for my cancer has damaged my bowel) and I was under St Marks hospital in Harrow. Whilst there my hubby asked for advice and my consultant there told him they tend to use surgery there rather then a medical approach and that he could be referred there by our GP.
In the meantime our GP referred him to another Consultant at our local hospital who was really nice and listened to our concerns. He sent him for an urgent MRI and last week rang us with the results.
His crohns has spread dramatically to the large bowel and had bored into other areas. It was now classed as severe. He has recommended Infliximab which obviously has horrible side effects and raises the risk of lymphoma. With my past cancer we are very scared of anything that raises the risk.
He has also said he will refer my hubby to a surgeon - possibly mine! He is unsure though if the surgeons will agree to operate if he hasn't tried the medical approach first.

Of course with my history we are aware that surgery could lead to a colostomy or similar.
I am very scared. He has supported me over the years and now its my turn to be strong and I am finding it hard. He is in pain a lot and has to watch what he eats. He has begun researching different treatments such as Faecal Microbiota Transplant (FMT) and we were wondering if anyone had tried it or anything similar.

I would be grateful for any ideas or recommendations you may have.

Have any of you tried Infliximab or FMT? Are there any doctors you could recommend us contacting?

Really any information would be great as I am frightened.

Thanks for letting me join

04-09-2014, 04:04 PM   #2
Clash
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I'm so sorry to hear of the struggles you and your husband have had. I am not from the UK and it is my son that has been dx'ed with CD. I just wanted to welcome you to the forum. I'm sure you will meet some compassionate, knowledgeable members who will be able to share their experiences.

My son went on remicade right after his dx. He has been on it for two years along with an immunosuppressive drug, methotrexate. Although, now his disease has progressed and we will be stopping remicade. I, too, was concerned about the effects of remicade as well as the combo therapy he eventually needed but now that we are facing uncontrolled disease I am way more fearful.

Surgery can be an answer for some but it is dependent on how much of the bowel is affected. Also since there is a 50% chance of CD reoccurring at the reconnection site it can be a risky option. That said there are many who have been able to achieve remission with surgery, most have to use meds afterward to maintain remission.

I hope you get some solid answers with your surgeon consult and can find a way forward that you all are comfortable with.

Good luck.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-09-2014, 04:32 PM   #3
theOcean
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I'm so sorry to hear that both you and your husband have been through so much.

My Crohn's is also very severe, and I was recommended to go on biologics as well. I was on Remicade for a bit, which helped, but I was allergic to it and ultimately had to switch to Humira. They all have the risk of lymphoma, which I know is scary -- I lost my grandfather to it, so I was very concerned when I went on the medication. But you're monitored while you're on it with regular blood tests, and they know it's a concern. I've been on biologics and immunosuppressants (Imuran, which also runs the risk of lymphoma) for over a year now and I've been fine.

I know there's plenty of others on this forum who have had positive experiences, too. A friend of mine who also has Crohn's has been on Remicade for eleven years and he's never had any side-effects.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-10-2014, 12:42 AM   #4
badbelly
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Join Date: Jan 2013
Location: San Francisco, California

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Welcome and I'm sorry to hear of your husband's diagnosis and suffering.

I'm not a doctor, but I can tell you that my doctors have said that surgery is usually the last option and one they try to use strong medications to avoid. I'm on Humira, a drug similar to Remicade, and although it is very scary, it has helped my Crohn's symptoms a lot when nothing else I tried would.

I hope your husband can find a treatment that will work well for him soon.
__________________
Crohn's diagnosis Jan '13.
Current meds: Humira, Modafinil, pain meds as needed
Supps: VSL#3, multivit., d3, omega3, iron, b12
Past meds: LDN, cipro/flagyl, prednisone, pentasa
04-11-2014, 07:31 PM   #5
sickofcrohns
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Location: Toronto, Canada
Hello Firenze,

Infliximab (Remicade) is pretty scary, but for many of us, it works wonders. (I've been on it since early 2004). Depending on the nature of your husband's Crohn's, surgery may be less preferable than a medication-based approach -- Crohn's is far less likely than colitis to be localized, and it can appear in new places without warning, even after surgery.

Re: fecal transplants, they sound like a great idea for treatment in people whose Crohn's isn't at the severe stage that your husband's is at ("boring" into new areas). I suspect that, in his current state, infliximab and/or steroids are likely to be the treatments of choice to get his disease under control. Keep in mind that uncontrolled Crohn's can lead to long-term complications that are as bad as, if not worse than, the side effects of treatment (and that's without the benefits of increased quality of life that the treatments can bring). The various immune suppressants used to treat Crohn's also don't cause cancer, but they reduce the body's ability to fight it off. With a nasty disease like this, there are lots of compromises to be made. I know you two are sensitized to the devastating effects of cancer, but please don't just write off medical intervention because of an x or y % increased chance of developing cancer over the long term when the alternatives may be multiple surgeries (losing functionality each time) and/or much worse quality of life. Most people on immune suppressants get increased monitoring and screening for unusual growths, etc., so if any develop, they can be treated soon.

Good luck!
04-16-2014, 06:51 AM   #6
Firenze07
 
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Join Date: Apr 2014
Location: Maidstone, United Kingdom
Thanks everyone for your welcomes and replies. It is mind boggling and very scary to read all your treatments and problems etc.
I just want to cry when I keep thinking about it. My hubby is the strong one, the one who looks after us and now he is unwell and needs me who is a weakling lol.

I am spending the day today looking into various options and treatments that are available, but don't want to come across to the doctor as a "Googler" but I need to know what is out there!

Thanks again

xx
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