Husband has Crohns. He's very ill, I'm very sad

[Lolop2233]

My husband was diagnosed two years ago with perianal crohns, after about a year of being diagnosed with hemorrhoids. His symptoms have changed throughout the years. It started off with constipation and sharp pain in his anus when going. Now it is diarrhea a few times a day, nausea, itchiness, drainage, and he gets fevers after he poops. His inflammation levels are about 10x what they should be. He looks like he is wasting away.

Hes not proactive about trying new things. He is very hopeless, thinking that nothing will ever work so he doesn't really try. And I don't know what else to do for him.

I was wondering if anyone on here deals specifically with perianal crohns and what has worked for you? Do you eat or avoid certain foods? What medications? I need to hear some success stories, specifically with perianal crohns.

 

[Caitlin84]

That's not my specific kind of Crohn's, so I can't help there. I'm sorry things are so rough for you guys right now though. He sounds depressed. I would recommend finding a good therapist. The Crohn's is hard enough with out depression on top of it. Hang in there.

 

[24601]

Does he have a good GI? If not maybe it's time for you to find him a new GI who will be proactive for him. Perhaps someone on the forum would have a suggestion for someone in your area. Crohn's can really get you down and sometimes we Crohnies really need the people around us to look out for us and help get us the best treatment. It's so good that you're there for him.

Is he on any meds? I think a biologic like Remicade is good for perianal Crohn's but GIs may want to try immunosuppressants like azathioprine, 6mp or methotrexate first. I've heard of members on the forum having good experience with both.

definitely don't give up hope. With Crohn's it's a question of finding the right treatment and sometimes you need to try a few.

Has your husband tried supplement drinks like Ensure or Boost for weight gain?

Ask as many questions as you like on the forum! We're here to support you :ghug:

 

[Lolop2233]

He has a great GI who is willing to try many things, but my husband won't. He feels like the doctors should have healed him by now and he shouldn't have to try so many different kinds of meds. That's now how this works works though. The doctors are not God, they're only human.

He's been on azathioprine for two years and that hasn't done anything. He's tried many other types of oral medications as well. He's been on cimzia for a year and a few months, felt good for a few months after starting it then it all went down hill again. Now he's going to try humira but it's taking him weeks to actually do it because he's not really motivated to.

I am a therapist so I 100% agree that he needs support and empowerment through counseling. I'd be all for finding that for him. He's the one who's totally against it. It's hard to help someone who doesn't want help.

 

[Honey]

Hi there, so sorry your husband and you are having a hard time. I do understand because unfortunately Crohns is unlike other illnesses. It is a very individual one regarding symptoms and treatment. I was on the meds you mentioned but I had to agree to Remicade infusions as all else had failed. Yes, it does throw you ,naturally, as we are all human. It worked for me and I have been well for over a year now. So ,your husband must not lose hope! I am on steroids just now, Prednisolone, small doze.
Let me know how he is doing. I hope he feels better soon.
:welcome:

 

[24601]

It does seem that Crohn's is a disease where you have to be prepared to try the next treatment and believe that the next one will work for you or at least get you one step closer to the treatment that will work. It can be hard maintaining the motivation to do that though.

Would it help your husband to come on the forum and read about how others have had that experience of finally hitting on the right treatment and it turning their health around?

I don't know if this particular therapy would be suitable for him but if your husband would like to try something completely new (as that might feel more hopeful) there are trials and one that I've seen is a stem cell fistula plug trial currently recruiting at Mayo Clinic. All the info here. I think it looks promising!

 

[Robrich]

I have PA CROHNS FOR MANY YEARS
REMICADE WORKS the BEST.
It can be a life changer.
I presume he has fistulas?
I wouldn't mess around with Humira as that may build tolerance to the anti tnfs
Antibiotics can be very helpful.
Usually Flagyl and cipro together.
Others like augmentin can help.
Very important to keep it clean. Soak it wash it use a hand bidet after BM.
Topical antibiotics can help too.

 

[jayann]

Lolop2233

During a nasty flare last summer my doctor wanted to put me on the biologic, Humira. I had had side effects with another biologic, so I declined. I asked her to put me on Prednisone and an antibiotic, as it worked before. We started with 60mg for a few days and tapered off. I don’t recall the exact schedule, but your husband’s doc will know what to do. Prednisone always has worked for me, but it is dangerous to be on it long term. Not good for the adrenal glands.
After the flare cleared up, I started taking probiotics- VSL#3 Double strength and S. boulardi. I began taking them in Sept. It is now July (10 months later). And I haven’t had any symptoms. I don’t know what the future holds, but as long as I am symptom-free I don’t want to take something that will suppress my immune system again.
VSL#3 Double strength has 8 organisms and is by prescription and comes refrigerated to my pharmacy. Single strength can be bought online without prescription. VSL#3 is expensive, but to me it’s worth it. I came across a probiotic by NOW that has 10 organisms (6 are in VSL#3). I’ve never tried it, but it’s MUCH cheaper. However, if you can find something locally, you can avoid exposing the organisms to high heat. Lactobacillus and Bifidobacterium are strains to cultivate. The more organisms the better. If you take it, don’t take it within 2 hours of taking an antibiotic. Antibiotics will kill the organisms you want, but the probiotic has no affect on the effectiveness of the antibiotic.
S. boulardi is a yeast based probiotic and will not be affected by antibiotics which only kill bacteria. You can purchase a product called Florastor (expensive) at most pharmacies. I purchase an S. boulardi by Jarrow on Amazon for much less. However, I try to get it during cooler weather so the extreme summer heat won’t kill the organisms. You may be able to find it locally or some other company that makes it.
I have always felt that there was a bacterial component to this disease, since my problem began after taking multiple rounds of antibiotics for bladder infections.
I've done a great deal of research about the microbiota - that’s the organisms that live in and on us. I feel that getting a good set of microbes in the colon can do a lot for an injured gut. Some of the good bacteria manufacture short chain fatty acids such as butyrate which is healing to the lining of the gut.

While cause of Crohn’s is still unknown, much research is being done. It has been shown in trials that the microbiome of Crohn’s patients is different from normal people. Whether Crohn’s caused the change or the change causes Crohn’s is being debated. Personally, I think the change causes Crohn’s, but further study is needed to give the answer.
Here is a link to a very good study http://www.genomebiology.com/2012/13/9/R79
My advice is to google, google, google, and look for reputable studies about different treatments for Perianal Crohn’s. Best of luck to you. This is a hideous disease and I wouldn’t wish it on anyone. There IS hope. So much good research is going on I’m sure you’ll find an answer. DON’T give up!!!
jayann

 

[wild_one353]

Avoid lactose(milk sugar) and sucrose, that should reduce diarrhea quite a bit. Get calcium from cheese or yogurt. Mozzerella I find has the lowest lactose. avoid rice and corn. some fruist have lots of sucrose like bananas. choose apples instead but still keep fruit to minimum.

This is some of the recommendations from the book breaking the vicious cycle, which introduces the specific carbohydrate diet which was developed by researchers decades ago and under utilized by modern medicine. They did just recently conduct a study with the diet though and confirmed a benefit for IBD patients.

High doses of vitamin d have been show to benefits crohn's patients and symptoms a bit. 1000-5000 iu should do it, blood levels should be checked is a good idea.I take a resveratrol supplement that helps and also helps depression. ginger in a tea also helps my depression.

Studies show some people have had remission of IBD on antidepressant well butrin(buprion) and paxil. these meds are cheap and could be a home run if they work. I havent tried these yet.

After traditional meds, don't forget about marijuana some studies show benefit for ibd now too. Also, look into fecal transplants, some researchers believe it may cure the disease, lots of good research to back that up too. see below.

 

[dave13]

Hi

This coming November will be two years since my diagnosis,the day after thanksgiving to be exact. I was diagnosed after a resection but I also have fistulas.

I have five fistula. One year ago this week I had a fistulotomy and three of the five fistula had draining setons placed. My GI,colorectal surgeon and I discussed my treatment options. They wanted me on Remicade. We also discussed what may happen if I declined treatment. The fistula had been undiagnosed for some time and they were worried about further damage to my rectum as well as new abscesses and fistula forming. I started Remicade after the fistulotomy and my infusion this August will be number ten...or eleven. Anyways,you wanted a success story to share with your husband,so...

I have been seeing my GI and colorectal surgeon every three months. I was told at my last visit with my CS,which was last month,I am responding to remicade and we can discuss the removal of a seton at my next visit in September. I was told the setons would be in for 'the long haul' and was surprised by this news just a year after surgery. I was told I could lose my rectum a year ago and,in my opinion,I won't because I chose to be proactive and fight this disease using the tools available to me. We are all different and biologics are helping me,perhaps they will help your husband.

Leaving fistula untreated invites more damage. Every chronie can relate to your husband's reluctance to treat this disease,but we have to. I am not pushing remicade,it is an individual decision. It has worked for me so far and I wanted to let you know.

Feel free to PM me. Have you checked out the remicade and fistula,fissures and abscesses support groups? Perhaps the spouses support group may be helpful as well. It is a tough battle with this disease for the spouse/partner as well as the crohnie. Keep the faith.