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Roni and others who just had Resections

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Crohn's Disease
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Posted 4/3/2011 3:14 PM (GMT 0)
I am curious what your daily activities are like. I know you are about 2 weeks ahead of me, and that I have had some set backs (still!), but I am trying every day to do a little bit more. It gets a bit discouraging when I feel like I should be so much further along. I thought that perhaps if I knew what/how others were doing it might give me some idea of where I really am on the path.

I seem to do one household task, and then need a long nap. I will get up, have something to eat, try to do one more task, and need another nap. By then it is time to start thinking about putting something together for dinner and then the day is gone. I don't even have the energy to walk to the end of my street, much less around the block yet. Hoping I find out some answers tomorrow. We ran some more tests this weekend to see if I might have C-diff or some other infection of my poop. Everything else seems to check out, but my doctor is still hanging in there with me, trying to find an answer. Oh and I hit my high school weight today, just wish I had been trying to hit it! So I am still losing, despite trying to eat.
Posted 4/3/2011 3:49 PM (GMT 0)
Okay the third time will hopefully be the charm. Dumb forum keeps signing me out grr....

While I did not have a recent bowel surgery, I did have the kidney surgery only 8 months ago. I was much like you, discouraged because things weren't getting better for me like they did before. But because of the setbacks, what should have been a 3-4 week recovery it was a 11 week recovery.

I too was losing weight like crazy, had no appetite although I tried to eat some, it just wasn't enough to give me the energy I needed. So continue to be gentle with yourself. Also, although we are not old, we are older and that can affect our recovery too.

Rest up as needed, the long naps are going to be required for a bit. Also I was thinking maybe you should add in some Boost or Ensure to help you get some more nutrients into your diet to help your energy some. Also I made myself start walking a little. At first it was just a few doors down and back to the house. Then I started adding in a little more as I could. I think the walking little by little helped my recovery alot. I of course, would come home and sleep again, but it got better within time. I had to really push myself to do it too.

Eight mos out I am barely now starting to get some weight back on me. I lost about 22 lbs because of the surgery and I think that contributed alot to my fatigue. But now my appetite has improved and I have more energy now, not perfect as I am anemic, but it is better.

I think because of our long history with this dd things just don't go as smoothly anymore. Big hugs to you, I hope things start slowly improving for you. Hugs!
Posted 4/4/2011 12:15 AM (GMT 0)
Zanne, I'm 6.5 weeks recovery and still tired too. Sometimes, I'm so tired I feel shaky. I've been wondering if my iron is low.

I do light house work house and make smaller meals, but still have to take it easy and nap sometimes. I haven't tried any heavy chores yet. I just started to do more bending, carefully.

I get some pretty intense LRQ pain throughout the day and am still having a lot of "d", bowel spasms, cramping, etc.

My incision is healing very well, still tender, but no more searing pain like before.

It's been rough, but getting better. I sure hope I never have to have another resection again.

Zanne, are you still having a lot of LRQ pain?
Posted 4/4/2011 1:16 AM (GMT 0)
I am still having a lot of pain all over my abdomen. My incision itself is healed really well and not really bothering me too much. But my entire belly, inside is very painful and getting more so each day. I am still bloated, more some days than others. I had another CT this week, and I still have something going on in my colon. There is some sort of ileus going on, possibly caused by an infection. I am being tested for C-diff this weekend. I hope they find something soon, because I really need to start to make some progress.

I can do a small chore, like prep some veggies for dinner, or undo the dishwasher, then I am shaking and need to go rest for a while before I can do anything else. Today I was shaking by the time I finished my shower, but I think that was because I showered right after folding a load of laundry, no rest in between. Then I had to nap for an hour.

Thanks for letting me know where you are in healing process. It helps to know how others are doing.
Posted 4/4/2011 2:58 AM (GMT 0)
Well, it also sounds to me as if something isn't right with your healing inside. 4 weeks is still pretty rough and you should notice improvement, not regression. But try not to worry.

I'm so sorry you're not getting better. I'm sure the docs will figure out what's going on with you soon, Zanne.

Praying for you,
Roni

Post Edited (Roni) : 4/3/2011 9:02:44 PM (GMT-6)

Posted 4/4/2011 4:22 AM (GMT 0)
Hi Zanne- I've already reached the two week post op mark last Thursday. Hard to believe that it's already been two weeks. I have to admit that the healing process has been good as far as the incision is concerned. Very little pain in the gut area and the incision I guess looks good...I don't have alot of experience to judge. I still am having pain on my right side which is the only reason I've been taking my 1 vicodin a day. I don't know how much it stems from the surgery but I'm only trying to focus on healing my gut and right now everything else takes second place.

I'm think I'm more in the area of Roni. I'm able to get around pretty good and do get out and accomplish a bit. I've been trying to get outside everyday and enjoy and appreciate that. I have to say tho that I'm completely wiped out most of the day to the point that I get a bit shaky as well. I asked to have some bloodwork done B12, Iron, D3, Liver Enzymes since I suspect my Iron and B12 are completely depleted. I have a follow up with the surgeon and doc on Tuesday so we will see.

I too cannot gain any weight and I have complete diarrhea every time I go which is probably 6x a day. I suspect that the low res diet has something to do with it and the fact that I'm still on Cipro. The D and the fact that I'm not replenishing liquids as much as I should may have something to do with the weakness that I've been feeling.

I'm trying to get better with the diet and rest. I think I've been pushing myself but my body is asking why? The doc indicated that if I'm not hydrating properly that they might hook me up to the IV. With that incentive I'm drinking and supplementing as much as possible.

Zanne I hope that you turn the corner here at some point and the uphill turns in the opposite direction. Perhaps what Gail said was accurate in that you have some history with this disease and so it may take that much longer. Plus the fact that you've had more then one surgery probably doesn't help.
Here's to more energy each and every day out...for the both of us.
Posted 4/4/2011 5:04 PM (GMT 0)
Zanne - I think you should keep pressing the doctors as I agree with the others I do not think that your pain should be getting worse.  I send my hopes and best wishes that things pick up for you soon.

I am 2 months post resection.  Still get some stabbing pains and some aching, the aching mainly in my back.

But I tire easily.  Even before I had the op I was always tired due to the poison from the abscess.  It seems now that I have a store of good energy but each day when its gone its gone, then I want to sleep.  I want to sleep at tea time, so sometimes have an hour or so.  Most nights I am in bed by 9.30pm and then wake up at about 4am for a couple of hours before going back to sleep.   Ive tried not sleeping during the day, but heck I get tired and sometimes drop off when I dont mean to

Each day I reckcon I get 4/5 good hours of ok energy and then poop thats it

Posted 4/4/2011 5:33 PM (GMT 0)
Suzanne, Get those doctors to have another look at you. I know we can be slow to heal, but I truly don't
believe you should still be having internal pain.

Question, did you have this type of pain before surgery?
Posted 4/4/2011 7:17 PM (GMT 0)
Dunny,

I didn't have this type of pain before surgery and I didn't have this pain after surgery. It came on about 2 weeks ago. I had the type of pain I expected after surgery, some internal pain after eating, and pain at my incision. This is more a general all over my abdomen pain and my belly is getting distended. As I said, I still am having some Ileus, but the medication my GI put me on is helping, but I am forcing myself to eat. I am waiting for the results from my C-diff test. I hate to say I really hope its positive, but I do, because then at least we have something to treat. Otherwise I know my GI is going to want to do a C-scope and I just don't think I can face the prep. Oh, well, test, wait for results, and repeat. Thus is my life right now.
Posted 4/4/2011 8:49 PM (GMT 0)
Zanne, so sorry you are feeling poorly. I hope they can figure out the problem without having to do another scope. I had to have another CT scan about 2 weeks post surgery b/c of fevers and night sweats. I was losing weight too but it stopped after about 4 weeks. The only thing they could find wrong was a UTI. I do remember being shaky a lot too, which worried me but over time that passed. It took many weeks. I went back to work in 6 weeks but I was still having to move slowly and I have mostly a desk job. I don't have to walk a lot. Thoughts and prayers coming your way.
Posted 4/4/2011 9:26 PM (GMT 0)
Heard from my doctor. All tests are negative! Current thought process is that my system is just not waking up. The Domperidone is working on my upper digestive system, but doesn't work for the lower system, thus the pain and bloating. But my GI is going to call my surgeon and see if he has any further ideas. So I wait again until I hear from him tomorrow. At least he is calling in some tramadol for my pain because I really can't take this any more.

I was just starting my pity party when UPS arrived with a bunch of stuff I ordered for the two parties have to go to this week. (Meeting my daughter's fiance's mother on Friday and the rest of his family next Saturday, just what I am in the mood for) At least I had a few minutes of retail therapy! Nothing fit, but it was fun to try on some clothes and at least think about getting out of the house. Oh well back to some online shopping!
Posted 4/4/2011 10:02 PM (GMT 0)
Oh Zanne I really hope you start getting some relief soon. This just doesn't sound right to me!
Posted 4/4/2011 10:18 PM (GMT 0)
Wow, Zanne. I did not have that problem because I started having major D on day 3. If the doc is right and your system isn't moving well, then the bloating and pain make sense, especially because the pressure against the already healing muscles, resection, and incision. I had a lot of right sided pain, and still have some, and my surgeon said when he opened me up, he had to do quite a bit of yanking on the right side muscle to get to the LRQ.

Can you do a little more walking, maybe a 5-10 minute walk once or twice a day? (unless you are already walking enough.)

Also, maybe try having more soups and liquids like Ensures? I found Ensures caused things to move too fast so I had to stop drinking them, but maybe they would help get your system moving. You can try coffee too, it might hurt though.

Oh, I'm adding that gas was a HUGE problem and extremely painful. Could this be part of your discomfort?

Maybe someone else will think of some other suggestions.

Hope you feel better soon.
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