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Crohn's Disease
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Posted 1/2/2017 8:04 PM (GMT 0)
It was bound to happen sooner or later for someone who was holding off on Remicade, surgery and so on. I went in to ER in Dec, had surgery for small bowel obstruction, ended up with complications, so had to have another ER surgery, to repair a leak, and then woke up with an ileostomy bag. Been down somewhat about the bag, although I know it was necessary according to them. Merry Christmas, well I missed it at home. They put me on TPN but it was messing with my blood sugar, so then had to give me insulin to balance my sugar. Then acidosis and other complications. Well, the short of the story, is I'm home now, can barely walk from one room to the other, in a lot of pain. (hopefully healing pain) It's 11 day post op, should I still feel this weak. 3 days before I left the hospital I lost my appetite and couldn't eat. Been trying to keep eating little things I can handle. My blood pressure is still low. Think I need to have a little cry about now. If only I would get my energy back, it would be easier to handle.
Posted 1/2/2017 8:30 PM (GMT 0)
Im so sorry you went through all of this, Dorri! Cry as needed. It helps to get it out and then move on from there but it takes a lot of energy to hold it in all the time. I don't think its unusual to still be weak this far from surgery, you need to give yourself time and care. but if it persists or really worries you contact your doc. I just barely missed surgery after putting off getting on another med after i stopped humira, and my doc said how many more issues they have when a surgery is done as an emergency rather than planned, unfortunately that can't always be prevented sad Hang in there!
Posted 1/2/2017 8:43 PM (GMT 0)
That's a lot to handle. I would say it takes at least 3 weeks to start getting energy back.

After my final surgery that was the most frustrating part. I walked as much as a could even when all I could do was a lap or two around the kitchen and bedroom.

Its hard at first but after a few weeks things seemed to improve a little each day.
Posted 1/3/2017 2:08 AM (GMT 0)
Dori,

You've been through a terrible time. The time of year certainly doesn't make it any easier either. I too hope you're going though healing pain. Are you having a reversal of the Ileostomy soon?

I wish you renewed strength. It's so tough to look ahead during difficult times, but, looking back months from now, I'm sure it will have all been a worthwhile success.

Please let us know how you're doing in the days ahead.
Posted 1/3/2017 2:52 AM (GMT 0)
I'm so sorry you have gone through so much! I haven't had your type of surgery, so I have no useful advice, but be kind to yourself and patient with the healing process. We are all here for you if you ever need to rant or just some support!
Posted 1/3/2017 4:41 AM (GMT 0)
Thanks for the support guys.

The doctor told me the ileostomy does have potential for reversal but still doesn't know how I will do in the next few months? Today, I decided that I will look at it this way, the next few months with the bag will give me a chance to rebuild my health and hopefully my intestines, so I can have it reversed in the future. Since I already had 2 surgeries back to back, I need to rebuild a lot of strength for the next surgery if I should have it?
Going to miss my relish and onion on my cheeseburger, LoL
Right now, I'm still on the new pouch diet. After 6 weeks I will have more food choices to try. Right now my pouch is stealing a lot of my fluids, so I drink a lot to keep hydrated but still pee very little.

Think some of my weakness is caused by the pain killer they gave me, which is making it hard for me to remain upward for any decent length of time. Once the pain is better, I will handle the rest much better (I hope)
Posted 1/3/2017 5:49 PM (GMT 0)
It takes awhile for the ostomy to calm down but for most people by 2-3 months they start noticing things slow down. I'm 10 months out now and don't have any issue with hydration.

A few tips that helped me were not drinking plain water all the time. I alternated electrolyte water and herbal caffeine free tea with regular water. Also eating thickening foods with salt. My lifesaver at the beginning was pretzels with peanut butter. Gave me a much needed sodium boost and thickened up/slowed down my output. Apples without the skin and peanut butter also helped or unsweetened applesauce.
Posted 1/4/2017 1:25 AM (GMT 0)
Sorry to hear you've been through so much, dorri :-/

I wouldn't beat yourself up for feeling weak. It's perfectly normal. You will get your strength back but it will take time. A lot of pain is also very normal 11 days after major abdominal surgery. If you are on morphine or oxycodone, that sh!t is hell. I was on Tramadol for about 4 weeks after my second surgery, I think.
Posted 1/4/2017 6:02 AM (GMT 0)
Dorri,

I hope you start feeling better soon.

I had one surgery--colostomy--and it took me 8 weeks to start to feel alittle better. Please know that it does get better. 11 days post op is not enough time to have high expectations for recovery. Take your time. Try to eat some thickening foods...pretzels, creamy peanut butter and pudding, drink lots of drinks, and pamper yourself. No lifting and hold your incision when you sneeze cough and when you get up out of a bed or chair.

Wishing you a complete and speedy recovery. Hang in there!

Clo
Posted 1/4/2017 7:17 AM (GMT 0)
So sorry this all happened to you! I would say so, that being this weak would be normal after such an ordeal. Take care of yourself and give yourself lots of time to heal up. That's a lot that you've been through!
Posted 1/4/2017 4:59 PM (GMT 0)
I wish the doctor's would see I need the time to heal but while in hospital they were pushing crohn's meds on me, one of which I had told them I had a reaction to. It found it's way into my morning pills. When I was alert enough to question, sure enough, I had been receiving it for a few days. I refused it.


It's all going too fast for me.
Thanks for the pretzel and peanut butter idea?
Posted 1/5/2017 11:24 AM (GMT 0)
Dorrie,

Gosh...glad you found that pill you had a reaction to previously!

The hospital should give you a pamphlet telling you what thickens and what thins. I cart around individual use peanut butter, pretzels, individual servings of premade pudding and marshmellows for thickening with one small bottleof grape juice for thinning. (Not all at the same time. I just have some of them available when I go out.) If I start right when I notice an issue I don't have as many problems later on.

Hang in there. It's hard after you have surgery - plus you are learning how to cope with a stoma. Huge learning curve. Don't beat yourself up. Best advice I received was slowdown, rest when tired, walk as much as you feel able.

It gets easier. Hang in there!

Clo
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