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Our story

Hi. My name is ThunderBear. I'm my husband's caregiver. He is 35 years old and has been diagnosed for 8 years. This is how it began:

My husband was working as a carpenter in 05. He got bitten by a brown recluse spider and developed Mrsa from it. About 3 months after he got Mrsa, he started having severe abdominal pain. He had diarrheah all the time and started losing weight. One day he came home from work and looked horrible. He said he had hurt his back and went to bed. After 2 days I made him go to the Er. They ran labs and urine tests and told me that his kidneys were nearly shut down but they didnt know why. They did every blood test imaginable. And while we waited for answers, his weight dropped from his normal 135-140 down to 108. He was so weak, he couldnt dress himself. Eating caused such pain, that he stopped. Finally, after 2 months, the doctor ran a colonoscopy and an endoscopy and told me he has Crohns & possibly UC. He started on the routine 1st line meds. But the side effects were as bad as the CD. So he stopped after a few months. Back then Humira was like Remicade is now but our insurance wont cover it. Over the years, Ive researched natural foods that contain saicylates and started him on probiotics. He's had his remissions and relapses. He gained back his weight up to 128. But right now, he is in a flare and lost 8 pounds from avoiding food and diarrheah. He stays in excruciating pain. And hes always either constipated and bloated or going 10x a day. He is depressed and suicisal at the moment. I told his family doctor today about it but he didnt say anything. Just set him up with a new GI. His WBC was slightly low. That worries me. The doc said it was insignificant. But it still worries me. My husband is self concieus about his weight. The doctor actually asked him if he has been tested for HiV cause he was thin. That did not help his self esteem at all. We told him yes and it was negitive. The doc was really nice but he seemed unconcerned about my husband's mental state and pain. My husband is very depressed. Sometimes I wonder if I should have him committed until his suicidal thoughts stop. This is extremely stressful for me and our 11 year old son. We try to help him but he will not take his meds. Which currently Flagyl and Bentyl. He wont even get them filled. Im at a loss right now. So...theres my husbands story. I hope you all have advice on how I should take better care of him. I love him so much. It is hard seeing him suffer so.
 

Cat-a-Tonic

Super Moderator
Hi, welcome to the forum. Unfortunately, depression is a really common symptom of Crohn's so it's understandable that your husband is depressed. Were the Flagyl & Bentyl helping him at all when he was taking them? Bentyl is an IBS med (it's an anti-spasmodic) and Flagyl is an antibiotic that is sometimes used in Crohn's. Your husband might need some stronger medication though to get him feeling better. What other meds has he been on? I hope his new GI can help him feel better.
 

nogutsnoglory

Moderator
I agree he needs stronger meds so he can begin to feel less pain, absorb food better, gain appetite and ultimately weight.

It is normal to be depressed, he is going through so much and probably sees no hope in sight. I would strongly recommend therapy and an anti-depressant. If he is feeling suicidal he really needs to be seen by a psychiatric professional who can asses his condition. One of the neat side effects of many anti-depressants is that you gain weight on them. This is good news for the depressed Crohnie.
 
Thanks Cat & David,
Cat: He was on Flagyl and Cipro this time last year for an intestinal infection (it seems he flares the worst during spring allergy season). It cleared it up pretty quickly. He didnt finish it. I have trouble getting him to finish his meds. He takes them for a few weeks, starts to feel better and put on weight so he stops. He says the 5-Asa makes his stomach cramp. But Idk. Hes been on Prednisone, Salumederol shots once a month for a year, Entocort, Asacol/mesalimine and Canasa suppositories. They have all helped him. The steriods though, oh boy. They caused severe anger and personality changes that honestly, bordered on abusiveness. They also made his teeth deteriorate and his hips, L-spine and knees deteriorate. But they did help the pain immensley. Its just the side effects outweighed the benefits. The 5-Asa's helped after a few weeks but he never stayed on them long enough to see the long term effects. The Canasa helped but at this time, his rectum is inflammed so its very painful. Its so inflammed, that the Gi is putting off his colonoscopy. But they believe his Crohns has spread there.
David: He has been on EN in the past and it helped. Hes so stubborn when it comes to diet...He drinks Ensure Plus 3-4 bottles a day. But hes been so nauseated he hasnt drank any in a couple weeks. I just bought 2 cases of it today so I can do EN again. I also bought his acidophilus in pill form so the taste of the DanActive doesnt make him sick. I just worry about how it will absorb in pill form vs liquid. Also, peppermit oil for nausea. That always helps that.
 

Cat-a-Tonic

Super Moderator
It sounds like there are quite a few meds left for him to try - it sounds to me like he's never been on anything like Imuran, 6MP, methotrexate, Humira, Remicade, or Cimzia? Those meds are all fairly strong and could help get him into remission. The first 3 I mentioned are immunosuppressants - the thought behind them is that they stifle the immune system reaction so that the body stops attacking itself. The other 3 are biologics. Admittedly I don't know a lot about how biologics work, but they're often regarded as the strongest, top-tier treatment for Crohn's.

Can you have his doctor talk to him about the importance of taking his medication as instructed? I know that's a fairly common thing, once someone feels better they think they can stop their medication, but he really needs to know that it's the medication that's making him feel better, it's not that he is better and can stop the meds! Particularly with things like steroids and antibiotics, those need to be taken as instructed or he may have issues with his adrenal function (steroids) or develop an antibiotic-resistant bacterial infection.

Good luck to you - it sounds like you're in a really tough situation yourself, trying to help someone who doesn't sound like he particularly wants to help himself right now. Hang in there, and I hope things get better for both of you soon!
 
Thanks Cat...
He seen a new GI yesterday morning and this oone believes there is scar tissue causing the pain and diarrhea. Hes going to look at a CT that was done in April. Depending on the lcation of the scar tissue, if thats the case, itll either be resection or stretching. But he didnt prescribe any meds. We cant afford Humira or Remicade. He hasnt had steriods in over 3 years. He was on them pretty much constant for 5 years and as a result, his hip joint deteriorated and he lost his teeth from those and malabsorbtion on Vit D.
I finally got him talked into probiotics. Last night was his 2nd capsule and today he didnt have diarrhea and his pain is mild. Hes still really tired, though. It usually takes a while toregain his energy. For years Ive been reading about the SCD diet but my husband has no self discipline haha. But Ive been thinking about salicylate foods to help with inflammation. I talked him back into a liquid diet for a few days to rest his intestines. Hes been drinking Ensure Plus. Hes getting tired of them so Im going to try smoothies instead. We found quite a few online that he wants to try. I guess it wouldnt hurt to add
in some coconut milk or olive oil to boost the calories. It will be something to do until his next GI appointment next month.
 
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