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J pouch recovery slow

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Ulcerative Colitis
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Posted 7/22/2018 11:31 AM (GMT 0)
Hi all. Looking for some advise. I have posted before about this issue but feeling the need to ask again as I am getting quite concerned. I had step 2 J pouch on the 5th of June 2018. Now have a loop and awaiting reversal in Aug/Sept. I had a few complications with infections after my op but they cleared up before I was discharged two weeks later.
My problem is that I feel I have no recovered very well. I thought I would be feeling better by now but stil not in a good way. I have had problems with dehydration but thats now under control. My blood tests show that everything is fine. I just feel pretty crap a lot of the time and just sit on the couch all day. Everything takes so much effort and I feel so tired doing everything. I have no energy and small things like tidying up the house take so much effort.
How long is this going to last and is it normal. I have sat on the couch for almost 3 months and its killing me. I often wonder if something is wrong or this is normal. How much of it is recovering from surgery or is it muscle loss. even when I am sitting down I still feel pretty rubbish.
Has anyone else experienced feeling crap this long after surgery and is it going to get better. I sometimes worry that I will feel like this forever as it just not improving. My op was 7 weeks ago and I see other people say they feel back to normal at this point.
I have no idea how I will cope with step 3 if I go into it feeling like this.
If anyone has any advise or suggestions I would really appreciate it.
Thanks
Gayle
Posted 7/22/2018 4:01 PM (GMT 0)
Were you on prednisone for a while? Perhaps you are in adrenal fatigue. It could also be that the loop is not getting you enough nutrition to feel well. Sorry you are struggling.
Posted 7/22/2018 7:25 PM (GMT 0)
Step 2 crushed me, I was in the hospital for 22 days and living with the loop was a challenge. I lost 30 lbs after step two and I didn’t feel well until the week before my 3rd surgery (week 12). It took me 7 weeks before I went back to work and the only reason I did that was because I was soooo bored.
Posted 7/22/2018 9:26 PM (GMT 0)
I didn’t have three steps, just the two. So, I experienced something a little different. I do remember being exhausted. I had my surgery on Aug 25, and has an obstruction two weeks later which landed me back in the hospital. I do remember going to my cousins wedding in late Sept and didn’t stay past the meal because I was just so tired. I took naps almost every day and just stayed in the couch. I remember taking the dog for walks, and by walks I mean a few times around the house, lol.

It takes time. Your body has gone through a huge experience. It’s got to heal.

Do you think you may be experiencing some depression? It’s a big change and sometimes being isolated can contribute to feeling down. Are you talking to anyone or in contact with an ostomy support group? Sometimes the insurance will also cover a social worker to come to the house. I didn’t think I needed it when they first offered but looking back, I wish I had taken it. It’s a very personal, isolating thing that you’re going through. It’s hard, no matter how much your family and friends try to relate...it’s just hard for them to understand exactly what you’re going through.

In the meantime, try to be gentle with yourself. Maybe you can make a goal of doing one thing or going somewhere, even if it’s outside to sit on the deck/porch to get some sunshine and read or something.
Posted 7/23/2018 12:03 AM (GMT 0)
Just to clarify, are you doing it in 2 or 3 steps. If 3, how did your recovery of the first compare to the second recovery? I know that after my kidney surgery, and 1st step surgery, they told me even though you can resume most of your activities in 6-8 weeks, it can take 6 months before you feel normal energy levels again. I’m reminding myself this as I’m not even a week out surgery from my second step and feeling impatient.

Hang in there, this is a slow road, but you will get there!
Posted 7/23/2018 12:04 PM (GMT 0)
If you're on pred and tapering that can do it.

Also, everyone always says rest, but you really need to get moving.....force yourself to move, go for walks, what you said could be 100% right in terms of muscle loss. When you're laying around even a few weeks can make a night and day difference. Don't overdo it to the point where you faint or collapse but you need to make sure you get moving and get your muscles working again......you need to balance exercise and rest.
Posted 7/23/2018 9:52 PM (GMT 0)
Funny that we have surgery and hope/think everything should be fairly smooth.First whatever i have gone thru since Step 1 on Jan 9th is nothing compared to my UC.i wasn't an emergency patient,just my colon was spitting everything even on 40 mg of pred and last colonoscopy wasn't pretty so surgery it was.First surgery was the getting used to surgery/bag etc.Took 1 month off from contracting work which is physical.I pushed myself even though i wasn't 100% and when my body said EASY i took it EASY.2nd surgery is by far toughest bc we only have half of upper intestine working.Loose stools r common for me.Imodium is a daily thing.Cant eat too heavy at night bc bag might fill up during night.Breakfast is automatic.Drinking a lot during day,Can get lightheaded if I'm not careful.My business makes me have to move which i think is good.Make an effort to go out,walk around a mall,walk around the block-anything to get muscles and mind strong.Good luck
Posted 7/24/2018 3:01 PM (GMT 0)
Step 2 was by far the hardest to recover from, the surgeon told me afterward its a very invasive operation mine took 6 1\2 hours and it took me a full 2 months to recover from it. Everyone is different so you are not alone.
Everything I have read the 3rd step is much easier. Also, I am still tired I had lost so much blood before my first surgery during my UC time I am still slowly climbing up my hemoglobin is at 101 and my ferritin only 8 so that makes life very difficult and has affected how I feel. You should get your hemoglobin checked out if you are tired all the time. Good luck
Please know it does get easier it just takes time.
Posted 7/24/2018 5:03 PM (GMT 0)
Are you still on opiods? Are you going through withdrawal? It took me a really long time to recover from step-2 and I had similar complications to what you had. See my above post.
Posted 7/25/2018 8:01 PM (GMT 0)
I believe recovery varies for everyone.

1, Hemoglobin which is almost always low for Colitis patients and after surgeries will slowly return to optimal levels but this may take 6 months to a year.

2, Hydration with a loop ileostomy is near impossible so you always feel like you're hungover after a bad night out, all you can try and do is drink as much as you can, sneaking in fluids here and there and trying to eat foods that in theory will slow transit times down.

3, Muscular Fatigue doesn't take long to set in. This is why in the hospitals you are forced to go for walks because it doesn't take long for even the most fit person to begin losing muscle mass. This is why pushing yourself is important part of the process, with the ever most consideration to avoid a hernia.

Post Edited (Virdent) : 7/26/2018 9:25:18 PM (GMT-6)

Posted 7/25/2018 8:53 PM (GMT 0)
I had the three-step j-pouch process, and my last surgery was six weeks ago. Looking back, I can see a difference in each recovery, but each was/is difficult. I can see that, while my health is improving daily, it will take months or maybe years for my body to really recover from UC and surgeries.
I felt better after Step 1, because the UC was stopped, but my body was so depleted and inflamed that I was exhausted for months.
Step 2 surgery was eight months after the first surgery, because I had a blood clot in between. I was just feeling back to "normal" by the time of my second surgery. Recovery from Step 2 was pretty brutal. The loop ileostomy was not easy for me to manage, I struggled to stay hydrated, and I lost weight and felt like I wasn't getting enough nutrition because of the loop ileo. The fatigue after that surgery was significant.
Step 3 surgery was a piece of cake compared to the first two, but even that was hard. I had fatigue for weeks afterward, and it took me a while to feel recovered from anesthesia.
For me, it was important to be patient with myself and to move slowly. I couldn't believe how slowly I had to walk after each surgery - I am normally a pretty fast-paced walker, but I was like a turtle. But I did try to walk a little bit, slowly, each day. I'm still not back at my "normal" activity level.
Take care, and know you're not alone!
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