Wife of newly diagnosed husband.

[rnathaniel]

Hi all,
My 33 y/o husband has been suffering from stomach issues (like many of you did before diagnosis) for many years. About 6 weeks ago he went running and felt as though he pulled a muscle above his groin. The pain was consistent and got worse with physical activity for about a week before he went to the doctor. After a ct scan, they found an abscess in his stomach and mentioned the possibility of crohn's and asked for further testing. My husband was on an antibiotic for 2 weeks for the abscess and then had a colonoscopy done. He was full of ulcers and polyps which they sent for biopsy. The Monday after the colonscopy, he started experiencing intense stomach pain and diarrhea 8-10 times per day.

Got the biospy results last Tuesday and they officially diagnosed him with crohn's. He's since given mutliple stool samples and today learned that he has c.diff. I believe it's from the antibiotics to clear up the abscess. He also mentioned last night that he's been peeing very frequently and it's been painful. I'm concerned about a bladder infection on top of everything else going on.

Next Thursday he goes for another CT to check on the abscess before they start him on a medication.

I'm incredibly overwhelmed and feel like my brain is going to explode while trying to research all of the medications that they have suggested.
The suggested medications are: Humira, Stelara, Entyvio, and Inflectra.

His Calprotectin result was just 652.9 and his C-Reactive Protein was 14.4. So much inflammation going on.

I guess I'm just looking for other stories possibly like ours or, first hand accounts of the disease from some of you and how you're managing, what you're taking, etc. Any spouses that have info to share would be appreciated as well.

Thank you in advance.

 

[t-bone]

Wow!

Sorry to hear of your husbands many challenges.

He's very blessed to have you on his team at home

It is very overwhelming at times, but it sounds like you've got a good team to work with and they are up on the wheel getting labs and other testing done.

You've come to the right place to research and ask any questions you may have!

Good luck, and keep everyone posted on your progress

 

[Scipio]

Welcome to the forum. The first thing to know is that you are not alone. Nearly everyone here has already gone through the stage you are in now, and in nearly all cases things do get better, often a lot better.

The key thing is to find the right doctor and then do what that doctor tells you. A gastroenterologist obviously, but even within GIs some are better than others. Crohn’s is an incurable disease that can be hard and frustrating for docs to treat. For that reason some docs, even some GIs, don’t like to treat Crohn’s patients. So if you can, find a GI who specializes in treating IBD. Most medical schools and large teaching hospitals have an IBD Clinic where you can easily find such a doctor.

The GI doesn’t have to be an IBD specialist, but sometimes it helps. The key thing is find a GI who is smart and up on all the latest research and treatments, who listens to you, and whom you trust. And then like I said, do what that doctor tells you. There is no point in paying for all that fancy specialized knowledge, skill, and advice if you are just going to ignore it. If the GI you are already working with fits this bill then great – you’ve got what you need for step one.

Your husband is lucky in a way to be diagnosed in a time when the treatments for Crohn’s are getting better and better all the time. There are several effective drugs and therapeutic approaches available and more coming on all the time. When I was first diagnosed 9 years ago the drug that currently effectively keeps me in remission (Stelara) was not yet available. And the pipeline of new drugs for the future looks promising too.

A key goal of the therapy should be to avoid surgery. Continuous or many repeated bouts of active disease will cause a build-up of gut tissue damage and scarring to the point that it is beyond saving and will then require your husband to have sections of his bowel removed. And once it's gone it's gone for good. That’s why, except for very mild disease (and it sounds like your husband is already beyond that), the recommended therapy is the aggressive “top-down” approach - to give the powerful drugs first and prevent as much damage as possible rather than the traditional “step-up” approach of giving the mild drugs first and move up only when the mild drugs fail. The top-down approach has been shown to do a better job of preventing the need for surgery. Unfortunately, the powerful drugs are also the newer and more expensive ones, and thus insurance companies often push for the step-up approach as a way to limit their costs. Crohn’s patients frequently have to battle insurance companies to get the coverage they have paid for.

Another important thing IMO is for your husband to engage in his own Crohn's healthcare. He should consider himself the doc’s active partner in defeating this disease. In all but the very worst cases there is every expectation that a combination of skilled, aggressive therapy, an appropriate diet, a knowledgeable and engaged attitude, and a generally healthy lifestyle can result in a full and long-lasting remission that allows your husband to lead a more or less normal life.

Feel free to come here and ask questions as often as you need. There is a wealth of knowledge and experience on this board.

 

[my little penguin]

Understand your grieving
It’s a lot of information to process in a short time
My kiddo was dx at age 7
Now almost 18 (yikes )
It does get better
You get a new normal
Sometimes the beginning is bumpy finding the right med that works specifically for you (everyone is different)
But you will get there
Come here to vent and ask lots of questions
All of us have been there in one way or another
My kiddo has been good for years crohns wise
Biologics although scary sounding on paper
Are like the MasterCard commercial-priceless in my opinion
He has been on a different biologics since age 8
Best thing ever
Nice healthy intestine

good luck over the next few weeks
Come back often
No question is dumb or stupid

 

[DougUte]

Welcome to the forum! Sorry to hear about your husband. I was diagnosed with Crohns in 2010 at age 47. I ha d very intense stomach pains, so bad I told my wife I would rather die than livethe way I was. On Father's Day in 2010, I ended up in the ER. The ER doc performed, among other tests, a abdominal CT scan. He was the first doc to bring up Crohn's Disease. He recommended I go to a G.I.. My friend's wife was the nurse in charge at the same ER. She recommended a G.I. whom I still go to. He is awesome. He performed every test under the sun and confirmed a diagnosis of Crohn's Disease. He found I had a fistula going from intestine to intestine, and a large part of the small intestine that was so inflamed that I could not pass anything larger that a kernel of corn. Anything passing through that was larger than a piece of corn could have killed me. The G.I. sent me to a colo-rectal surgeon. I had a full, open bowel surgery where the surgeon removed more than 3.5 feet of my intestine. After the surgery, we had a battle with our insurance company, who did not want to pay for Humira. The insurance company required that I fail on at least 2 other meds before they would approve a biologic. The surgeon told me that the meds my insurance company wanted me on, sulfasalzine, and Asacol, were like "Pissin' in the wind". Both him and my G.I. knew I should be on a biologic. They appealed the decision, but the insurance company denied the appeals. It took nearly a year to get approved for Humira. Humira became the first medication that really helped my in the course of my disease. in 2018, antibodies formed by taking Humira built up in me to the point that the med was no longer as effective. The G.I. prescribed doubling the dose of Humira, (weekly injections instead of every 2 weeks). The insurance company would not approve that request either, so he then changed me to Entyvio. Entyvio is maintaining my current status of remission. I still have a problem with diarreah. I am doing very well now. There is hope that things will get better! I hope your husband's case is not a real difficult one. One thing that helped me a lot was this forum. There are people here that are going through similar trials, and some like me that are a lot further along the road.

 

[rnathaniel]

I truly appreciate all of your responses! I'm finding this forum to be very helpful. Seem to be getting a very slow start with the current GI so, another was recommended to us (Traverse City, MI) and I just called to get a referral today. His stomach and the area where the abscess was is still very painful so, I don't think the abscess ever resolved. I think they should have drained and packed it almost two months ago instead of trying the antibiotics.

For someone who has always been so healthy and active, he's really making up for it now!! It's been so, so hard to watch the weight loss, fatigue, weakness...

 

[Mountaineer01]

It will be a long and sometimes difficult journey, but right now the best thing you can do for him is to let him know you are there for him and in his corner no matter what. I know when I was at my worst, I probably wouldn't have made it if it weren't for my wife's reassurance. Crohn's is a frustrating condition in that seemingly the same treatments work differently for different people. I was on corticosteroids long term (a bad idea in retrospect), plus Pentasa and daily hydrocortisone enemas, plus what felt like endless other drugs to the point that I was taking 20-some pills a day. I finally switched GIs and she took me off most of the other drugs and put me on Humira, which has been a lifesaver. I have been in remission for nearly 3 years now and while I'm not the same as I was pre-Crohn's, I'm probably about 75%.

While you are trying to find a treatment option that will work for him, whatever you do, make sure he stays hydrated. With frequent diarrhea, dehydration sets in fast. It can also contribute to kidney stone formation, of which I've had too many to count. As painful as Crohn's can be, I have to say the worst pain I ever experienced was when I had a 6.5mm stone get stuck in a ureter for a couple of days. Let's just say those were the longest two days of my life. Also, try to make sure he eats bland foods while he's flared. As much as I love spicy foods, there's no way I could have tolerated any of that stuff when I was in a flare. It's also important to eat smaller meals and give the gut time to process everything. If he doesn't feel like eating, don't force him; however, if he doesn't eat for a couple of days at a time, contact his doctor.

If the doctor puts him on corticosteroids (Prednisone, Budesonide/Entocort, etc.), note that they should only be used temporarily and are not for long term use. I was on them too long and started having some very nasty side effects. Plus, I now have osteopenia that is bordering on osteoporosis and am a medium hip fracture risk at age 40. One of my doctors thinks that may be from being on the corticosteroids for too long. I went from climbing communications towers in my early to mid 20s to needing to use a cane to steady myself if I'm going to be standing for long periods of time starting when I was 39.

Don't get discouraged if the first treatment option or two doesn't work out. There are a lot more methods of treating Crohn's today than there were 20 years ago. If one doesn't work for him, talk to the doctor about trying something else. But, it's important to note that some treatments take a while to show their effectiveness. Humira, for example, on average takes about 2-3 months before you start to feel better, then the improvement is gradual. Whatever treatment route they decide, it's important to give it some time to work. And as others have mentioned, try to avoid surgery at all costs.

Although he may not feel good, he needs to stay as active as he possibly can to keep other problems in check. I wouldn't recommend jogging or anything like that; however, if there's somewhere he can walk just to get out and keep moving that will help his morale. Just make sure there's a bathroom available if he needs it. Faith and social support are important as well. The worst thing you can do if you are sick is to suffer in a vacuum.

What kind of job does your husband do? If he's able, he needs to get medical documentation from his doctor(s) and speak to his management about working remotely. My office has one bathroom shared by about 85 guys, which doesn't work if you're in a flare.

WIshing you both the best. Feel free to reach out if you have any questions or just need support or to vent. We have a variety of experience here and no two people's experiences are alike. Whatever he or you are feeling, the odds are someone here has been through a similar scenario.

 

[rnathaniel]

Appreciate all of the feedback! He’s feeling better now that all of the antibiotics are done from the c.diff. He had a CTE scan done on Friday and his GI called today and said he found something in Tony’s colon (non cancerous) but wants to see him this week Thursday , instead of his scheduled appt for the end of next week. Anxious to get in there and speak with him for the first time since the diagnosis over the phone weeks ago.
Referral for the second GI was approved so we’re waiting for them to schedule an appt. Getting my questions on paper and all of my ducks in a row for our meeting with the GI.

 

[rnathaniel]

He’s a project manager for commercial construction....super stressful job

 

[Mountaineer01]

Stress definitely doesn't help Crohn's any. When I was going through a bad flare a few years ago, I had a very stressful job and spent over 3 hours of commuting time on the road each day in addition to about 10-12 hours of arguing in the office every day. My family doctor finally sat me down and told me that if I wanted to live past 40-45, I needed to make a change and I needed to make it fast. I took the warning seriously and found another job that was closer to home, paid better, and has about a quarter of the stress I had in the old position. Plus, this job is letting me work from home full time, which is an even better benefit.

It may do your husband good to seek another job if he finds the stress contributing to his condition. I honestly think a less stressful job will do him good speaking from personal experience. He can leverage his experience in project management and be eligible for many jobs out there, particularly those with the government or government contractors (Federal or State level).