After surgery

[Wiles]

I had surgery near the beginning of July. I wish my disease never got this far. I'm saddened that my body can't do what it's supposed to do anymore, I need to get needles for B12. I'm mad that I still have the diarrhea, that I'm still getting new fistulas that the doctors don't seem to care about. At least I'm not ending up in the emergency room all the time anymore.

Sorry, I just needed to vent.

Anyway- does anyone have any tips for living after surgery? Any good vitamins? I've heard that some vitamins in powdered form are better- since my bowels are shortened I don't absorb things as well.

 

[Kev]

Hi Wiles, welcome to the forum. I think you'll find this is a pretty great place. I know what you mean about the surgery. I had mine last february. it's not nice to think it takes getting cut open to deal with the ravages this disease can cause. But, it does bring home how important it is to fight this illness, to take your meds, watch what you eat/drink, rest, exercise, etc.. Not like you want to sign up for another op in the near future, right? I take a generic vitamin simply because it doesn't use lactose as a filler. Lots do, and I'm sensitive to lactose for some reason. did they tell you how much they took out? Was it colon, ileum, or what? It makes a difference. I lost 1 1/2 feet of the large colon.. I don't have SBS (Short Bowel Syndrome), but I knew that it was a possibility going into the operation. I had no choice... docs wouldn't listen to me about how bad I was till it was too late
Anyway, what's past is past.. Like yourself, I have to learn to live post operation, and so far, its been going pretty good. Life is what you make of it afterall, right?

 

[Wiles]

Hi Wiles, welcome to the forum. I think you'll find this is a pretty great place. I know what you mean about the surgery. I had mine last february. it's not nice to think it takes getting cut open to deal with the ravages this disease can cause. But, it does bring home how important it is to fight this illness, to take your meds, watch what you eat/drink, rest, exercise, etc.. Not like you want to sign up for another op in the near future, right? I take a generic vitamin simply because it doesn't use lactose as a filler. Lots do, and I'm sensitive to lactose for some reason. did they tell you how much they took out? Was it colon, ileum, or what? It makes a difference. I lost 1 1/2 feet of the large colon.. I don't have SBS (Short Bowel Syndrome), but I knew that it was a possibility going into the operation. I had no choice... docs wouldn't listen to me about how bad I was till it was too late
Anyway, what's past is past.. Like yourself, I have to learn to live post operation, and so far, its been going pretty good. Life is what you make of it afterall, right?

Thanks.

I had 2 feet removed, where the large and small intestines meet, I think. I'm not sure if the ileum was taken out too, I have a terrible memory! The surgery itself wasn't bad. I thought I would be in more pain afterwards, but it wasn't as bad as I expected. And I'm quite proud of my scar! I'm sensitive to lactose as well, maybe I should look at the vitamins I'm already taking. Though I don't know if they would contain enough lactose to bother me.

Reading my previous post, I see it's very negative. I guess I'm just bummed that things are going downhill already; I was feeling better up until a few weeks ago. I'm not in a hurry to get in another knife fight with a surgeon, they don't play fair!

You're from Halifax, eh? I used to go to the Halifax hospital regularly for the adalimunab study.

 

[Jeff D.]

All of us seem to get depressed at some point or another or maybe that's just me. I wish you the best of luck. Check everything you eat for anything with lactose. Tell the docs whenever you have any pain, discomfort or anything out of the ordinary.

I haven't seen you before so welcome to the forum.

 

[Kev]

Hey Wiles.. So, u r familiar with Halifax.. What part of the world do you call home? As for lactose, don't get me started. They even put it in margarine, because its such a cheap filler. Now, I'm not claiming that the amt in a pill will throw me for a loop, but I figure every little bit avoided helps. Seriously, that damned stuff is just everywhere. If you are senstive, you need to watch for it, OK?

I was pretty negative too. I was told that the operation was a complete success, and that I was 'cured'. Less than 8 weeks later, it all came back, far worse than before. I had a real attitude for quite a while, but hey, that's only to be expected.

 

[killerzoey]

Sorry you're feeling so down and discouraged. I don't really know what vitamins would work best for you but I get mine from Kirkman Labs online and tolerate them well. They have the minimum and most benign fillers. Lots of parents of autistic kids use them. Also some liquid versions of some vitamins. Thought I'd throw that out there for what it's worth. No need to feel self conscious about feeling negative. It's natural to mourn. My disease is new to me and mild, but I'm mourning the mere fact of it. This board seems very understanding. Take care and I hope you either get your Dr's attention about the fistulas or find a Dr. who will take you seriously.

 

[Wiles]

Hey Wiles.. So, u r familiar with Halifax.. What part of the world do you call home?

I'm living in New Brunswick at the moment. It was a long bus ride to Halifax for appointments!

 

[Kev]

One tends to forget how much of a 'medical' hub Halifax is... As a young lad, while my mother was battling cancer, we'd make a weekly pilgrimage to Halifax (500 km+) each weekend to visit her. Four decades later, my father repeated those trips, but this time he was the patient, and in his case, it didn't work out like we all hoped...

I've lived here almost a decade now, and my GI says she treats over a 1000 patients and I first thought that must be an exagerated number.. but having seen first hand the clinic lineups, and hearing where some have traveled from, I stopped doubting it. anyway, you say used to ride the bus, so I'm assuming that you've found a source of treatment & advice closer to home since then...

 

[Wiles]

When I was taking the adalimunab I had to go to Halifax, but after I was terminated from the clinical trial I found a GI doctor in Fredericton. I didn't really mind the Halifax trip, it's a nice city, and I have friends and family there.

 

[kpratte]

For the big D, you could have the problem that I have. The terminal ileum re-absorbes bile salt. Bile in the colon will give you a major case of the runs, the thing that you'll notice is the stuff coming out is completely yellow in color. They don't want to immediately treat it because they want to see if your body will figure it out (absorb it elsewhere). The easy treatment is Cholestyramine http://en.wikipedia.org/wiki/Cholestyramine which will bind to the bile salt and you will pass it without problems. I mix each packet with a 20oz Gatorade so that it gets completely dissolved.

I take iron (always had issues) and Calcium (all of the prednisone use) and get the B12 once a month 1000mg

- Ken

 

[tonya_n_ky]

kpratte said what I was going to, lol. I highly suggest the cholestyramine. It helps...it does cause some bloating but well worth it to be able to go out of the house safely. I too get the B-12 injections. Yes it's a pain in the bum BUT well worth how you would feel without them. (Trust me). Just keep ur chin up. "Your body can't do what it's supposed to do anymore", but ...it does...just in a different way. It's really hard sometimes, I know, But keep yourself as strong mentally as you can, it's real eay to get depressed and end up in a miserable hell. Just take the best care of yourself as you can and don't get in a bad frame of mind, it makes it harder. You have Crohn's...It doesn't have you. Hugzzz and keep in touch.

 

[kpratte]

I call the B12, my once a month visit with Mike Tyson. But as of late it doesn't seem to hurt so much.

Oh, I forgot to mention mixing the cholestyramine with Orange Juice like they recommend is absolutely horrid (least in my mind). The stuff starts to separate in a couple minutes thus why I do the 20oz bottles as I put the cover back on and shake away before each sip. The sugar water also helps hide the taste too.

- Ken

 

[Wiles]

Thanks

The surgeon did mention the bit about the bile salt. What confuses me though is that after a while I was starting to have formed stools again, and that went on for a few weeks, but now I'm back to having D again.

When I had my b12 shot I didn't even feel it... until half an hour later. It felt like someone slugged me in the arm. It did make a difference though. I don't feel like I'm going to fall asleep halfway through the day anymore.

 

[tonya_n_ky]

A little b-12 tip..(or I think so anyways) get it in ur hip. I got my 1st one in my arm and OMGoodness. It hurt like hell later. In my hip, it's not nearly as bad, I really can't tell I even got one. More fat or muscle there, lol