Newly diagnosed and trying to figure things out.

[Thomash]

Hi everyone,
I'm really green here, but it is nice (or not so nice honestly) to see so many people who are also sharing the same experience I'm having. I managed to make it through the first 47 years of my life pretty uneventfully health wise. In October I was hospitalized for 3 weeks with a partial bowel obstruction which they have diagnosed as Crohn's. I've had 2 CAT scans, 2 Colonoscopies, 1 endoscopy. All the fun that so many of you have also had. I think I'm more fortunate than many of you because they tell me that I only have about 2 inches of thickening on my terminal ileum. The problem is that currently that 2 inches is restricted down to about 3mm or so. I'm not an expert, but that feels less than ideal from a personal point of view.
I have to say, for anyone looking to lose weight, the Crohn's diet is fantastic. I've lost 30 pounds since October. Of course the down side is I just spent another week back in the hospital last week so there is that.
I really haven't stopped flaring since October. I've had optimistic days when I eat, I've had a lot of painful days when I don't. (and that this is a whole new class of pain that makes everything else feel like a papercut)

I've learned that I have to drink WAY more fluids than I ever thought I could. I have learned that there are foods that I have eaten all my life that now do new and interesting things to my intestines. (Like inflaming them to the point where they mechanically make you vomit, it's amazing. I had no idea they could do that!)
Surgery sounds like it is likely in my future, although when that might happen is a question I haven't gotten an answer to. I just heard about the strictureplasty here while reading the forums, and that sounds like it might be an interesting option to losing a piece of terminal illium, if possible.
I'm currently on Prednesone, but since October I have also taken Azathioprine and Salofalk. I don't really know how long they are supposed to take to work, but I haven't seen a lot of what I would consider positive results.
I guess like all new people on here I'm worried about how much this disease is going to steal from my life, and what I can do to keep it from doing so.
If anyone has experience or advice they would like to share, I'd be interested to hear. I'm particularly interested to hear from anyone who has had similar surgery, and how that has affected them afterwards. Am I trading off an obstruction only to need to move my desk into a bathroom for example?

Thanks,
Thomas

 

[Clash]

Welcome to the forum. Its a lot to take in in the beginning.

My son's active disease was located in the terminal ileum at the ileocecal valve at dx. Surgery is usually reserver ed as a last result when the narrowing is caused by inflammation. When the narrowing is caused by scar tissue then no med can correct that and surgery is often required if obstructions are becoming the norm.

My son was placed on a biologic in hopes of resolving the narrowing caused by inflammation at the ileocecal valve. After two years it was decided that the chronic inflammation was not responding to the different meds he was on and surgery was needed.

He was in the hospital for I believe 4 days and back to school and work 7 days after surgery. His bms have been fairly normal mainly 1 to 2 times a day maybe a little softer than normal.

Also it may not be specific foods are inflaming your bowels but that the foods are having trouble getting through the strictures area so it causes vomiting and the like.

 

[Thomash]

That sounds like the exact same place that my dx is. Did they take out the valve with his surgery?

 

[scottsma]

Hello Thomas and welcome to the forum.I can't help with your question regarding surgery,fortunately for me.But someone who can will be along soon, to share their experience.Of course,you may not need surgery at all.We are all different.You'll hear that a lot on here.Symptoms,treatment,meds,diet etc differ enormously from one person to another.But I must say,you sound very up-beat about it all.Your lifestyle might change,but it may be a gradual change that will be easier to deal with.I hope you're having a GOOD day today.Best Wishes to you.

 

[Clash]

Yes, the ic valve was where the inflammation and damage was located. The surgery was an ileocecectomy. The removed a bit of area before the ic valve, the valve and the cecum to connect the large bowel back to the small.

 

[Thomash]

Thanks Scottsma. I'm really hoping that I won't need the surgery personally. I have grown attached to my bits, for the most part.
I had two doctors with differing opinions this past week. One (the gastro guy) told me that if he had my intestines, he would do the operation. The other (the surgeon) said there was no need to do it until they need to do it. Both answers made me feel it was more a question of when.
Of course, if I can find something that will reduce the inflammation between now and then, I'm not opposed to buying myself some remission time. I understand remission happens.
I don't know if it happens for everyone, or if it is just a present that some people get but not others.
As far as the attitude, I've also learned that stress is one of my big triggers, so I'm REALLY making an effort to look for the rainbows and butterflies. It doesn't always work, but hey, we're all human.

 

[Clash]

Rainbows and butterflies LOL.

If it is inflammation causing the area to be strictured I would ask about starting with the big guns like remicade. For many CD patients remicade is a game changer. Studies show that starting a biologic shortly after diagnosis lessens the risk of permanent damage and surgery.

It often takes something like pred to kick-start things while you concurrently start a maintenance med like remicade. The hope is that by the time you taper off pred the maintenance med has had time to reach therapeutic levels.

 

[Thomash]

Good to know about the Remicade. I have an appointment to talk to my family Dr today to fill her in on my adventures this past week. Maybe I can get her to get the ball rolling on the Remicade here from her side of things. Sounds like best case would be for me to get it under control before the scarring happens.