Crohns Flare: Wedding a Month Away

[mrstoked]

I am new to the forum and this post can likely fit in a number of different sub-forums but I figured the main would be my best bet.

I will try to keep this as short as possible but with Crohns history is important when dealing with the future. My fiance was diagnosed with Crohns when she was 13 (now 27). She had a flare up then and another in her college years. Since college her Crohns remained in remission until about 6 months ago. At that point she had severe abdominal pain coupled with vomiting and extreme bloating. The second instance of this I took her to the hospital as I felt she must have an intestinal blockage. My fears were confirmed after an MRI showed she was fully blocked. This happened a total of 3x in a 2 month span. All three times the blockage was 24 hours long and then she would be completely fine as if nothing happened.

At that point she was put on Entocort and 6MP. A month later her white blood cell count came back low and given her ongoing issues (this continued to happen) she was put on Humira. Between her hospital stay and the Humira she experienced various degrees of pain/discomfort. She would be good for a week and then have a day or two of rumbling stomach and pain. Likely a small/partial blockage but discomfort for sure. Since she started Humira about 3 weeks ago she has really been having some issues to the point where now (last two weeks) every time she eats solid foods she seems to be blocked. The doctors/surgeons certainly see inflamation in her small intestine but do not necessarily think it's scar tissue. Given her increased occurrences of severe rumbling/cramping without any other symptoms such as fever or weakness they're starting to think maybe there is scar tissue and that is what is causing the blockage.

Either way she has just gone onto Prednisone after a blockage Friday night. I also went out and bought a juicer and have put her on a strict fluid diet. She has been eating Ensure, drinking milk shakes and most importantly drinking various vegetable/fruit based juices. She's also seemed to find some luck with Jello and Pudding.

Now surgery could certainly be something in her future. Obviously it's not a best case scenario but we could not have a choice. Our biggest issue right now is our wedding is August 9th. We need to make it to the wedding and then we can really tackle this head on after that. So far she has responded very well to a liquid only diet. We'd like to keep her on that for as long as it is effective and hopefully we can gently wean her back onto solid food if her stomach allows it. I was hoping we could connect with someone who has gone through similar issues and maybe get a bit of help/advice on how to proceed here. She has lost 15lbs and we'd like to gain as much of it back as possible. Does anyone have any advice on what juices/nutritional drinks we can feed her that will be gentle but promote weight gain?

Obviously milk shakes, flak seed oil added to drinks and even a bit of vegetable oil should help but I would love to hear some other tips or tricks some of you have used.

Thank you very much in advance and I am very happy I found this place. This is my first post but I've done quite a bit of reading and it has been very helpful.

Best,
Matt

 

[Orchid]

I remember TheOcean making a comeback from some pretty extreme weight loss so I'm going to tag her in to talk about how she bounced back.

 

[DJW]

Hi Matt and welcome. Last year was he'll for my with blockages. My heart goes out to her.

I went on a low residue diet. No fiber. The closest I could get to solid food was Mac and cheese. I drank a lot of ensure.
Her weight could also be down because of fluid loss. When the intestine gets blocked the body produces lots of fluid to try and clear it out. When things open up again that fluid is lost. Make sure she drinks a lot.

I finally had surgery a year ago last may. ALL my weight and then some came back.

Congratulations on the up coming wedding.

 

[Malice67]

I don't have any advice but did want to tell you how awesome it is that you are being so supportive. I am sure that makes a huge difference to how she navigates what she is going through. good luck to both of you!

 

[shamrock15]

Fish is also a good choice - great source of protein that is easily digestible.

I had a similar experience - started a flare about 8 months before getting married, and needed surgery (actually two of them) only about 1.5 months after we were married. Not a great way to start a marriage, but we have held. Support from my wife was crucial.

She may require another med - maybe humira just doesn't do it for her. I haven't tried it so I cannot comment on that one. There are other options though, but they do take some time to be effective. Remicade worked for me, and it is still doing a good job.

I think you will still enjoy your wedding. The day for me was a blur, with no real memories of crohn's being there at all. The pred should help and likely should keep her a little more comfortable at the time, and it may assist in some weight gain due to an increase in appetite and maybe some water retention. Hope all goes well.

 

[If*]

hi, i have had some issues with weight. We found Boost in powder form and it taste really good!! What is great about it is that it can be mixed with your choice, reg. milk, organic milk, lactose free, almond milk, it can be put in banana yogurt smoothies, etc. and yes i gained a little on it. 5 lbs!!! Took a few weeks but yippee!!
Scar tissue can be a bummer, super sorry. You are totally spot on to be aware of nutrition. Juicing can be helpful (so great job on getting a juicer). Take a look into organic barley green, also check out coconut oil to add to smoothies for a 'good' fat, and coconut water for hydration help.

take care and thanks for helping her

 

[rickm37]

Congratulations first off! Hope all goes as planned. I'm newly diagnosed with Crohns and I see your fiance has been battling for years. My only input would be to be careful even with juicing as there is alot of fiber (what I was told to avoid) even in the juice of fruits and vegetables...maybe not the case for her, just an observation. Ensure is a good supplement to add calories and protein as well as Boost Breeze, a non fiber juice with calories and protein if she gets tired of the Ensure. I hope this was helpful, and maybe talk to her doctor about the juicing and fiber.
All the luck to you both and keep up the great work,...I know it's not easy as my fiance is my rock right now.