Just had colon removed; not recovering well.. advice?

[Boloby]

I had the surgery last Monday (the 24th), but things have been more difficult than I expected, mostly because the doctors don't know how to manage my pain. I've been on Suboxone for years, so I have an incredibly high tolerance to pain meds. No one at the hospital, besides one of my nurses, is familiar with Suboxone; most have never heard of it.

Immediately after surgery, I was in excruciating pain, but it started easing up by the end of day two (? day 3?). It seems a lot of the pain was from being bloated and full of gas. By Friday, I was walking around. It got easier and I walked farther on Saturday.

Then on Saturday they gave me solid foods, and early Sunday morning, I woke up in paralyzing pain. I ended up puking and eventually felt better, but the paralysis lasted four hours. The next time I got up to go sit in a chair, I could barely make it, having new back pain to compound the rest of it.

I'm still completely bloated and sure my back is messed up. I understand that I need to walk to help the healing process, but it's nearly impossible. I was proud of myself on Friday after my first walk, but now I feel like I can't do what the doctors want. To make things worse, I've got tennis elbow in my right elbow, which is preventing me from relying on my arms for support.

I realize I'm probably the only one here who's had surgery on Suboxone, but if there's any advice anyone can give me, I really need it 'cause I'm getting scared.

 

[2thFairy]

I had TERRIBLE back pain just hours out of surgery after colectomy. It last about a month total. The first week was really bad, and it very slowly got better. I also did fine with liquids and had problems with solid food due to ileus. Once the time of ileus finally passed, there was such high output from the stoma that I became severely dehydrated. The bloating and gas are normal, even though it feels horrible! There were a few other complications on top of these things as well. I was in the hospital for 12 days, lost 14 pounds, but came out okay.

It was a bit frightening at times, but I just reminded myself that I had been warned that each of these thing could happen, and somehow found comfort in that.

I'm sorry you are dealing with these issues. Colectomy is very hard on your body. The changes can be overwheling at first, but it does get better.

 

[Boloby]

Thanks for sharing your experience. That definitely helps. After I made the initial post, I got out of my bed and into a chair, and it was much easier than yesterday, which made me feel a lot of relief, psychologically. But then, an hour later, a tray of solid food arrived and I refused it. I hope I don't have to fight wiht the doctors over this.

The only way I was able to get to this point is because I gave my insides a rest. My goal now is to start walking around again, and I'm not going to jeopardize that because these doctors don't listen to me. I should also note that I was receiving TPN before surgery, but they have yet to resume it. I seriously don't get it.

 

[723crossroads]

They stop all meds when you are out of surgery. I had no blood pressure meds or anything after surgery for three days. I had to wait till they got ahold of my Dr. and he ok'd it. I wonder why they don't take care of these things before you have surgery? Makes no sense to me at all. My son was on suboxin and is not any longer. I am surprised they are giving you that to be honest. I sure hope you keep progressing each day as I think you will. I did after mine but mine was kidney ectomy. Had cancer in my right one. Totally unrelated to crohns. But the surgery was very intense and painful, believe me. It took me 3 months to really feel alot better to where I could do everything I was used to doing.A year to get the numbness at the site gone. So, just take it one day at a time and let your body heal in it's own time. Try not to worry too much. Most of these issues will resolve themselves in time.

 

[2thFairy]

They stop all meds when you are out of surgery.)

That was not the case for me. I had all of my regular meds from the first day aftrer surgery.

 

[Boloby]

Thanks again. I'm reluctant to report that I'm feeling better (don't want to jinx it... I'm superstitious that way), and was able to take a nice walk, which helped release a lot of gas (lots of burping) and led to my bloating being much less. A physical therapist came by and showed me some exercises, and I finally saw a stoma nurse and the "ostomy video."

Also, the surgeon finally came by and agreed to keep me on fluids for now, though he wasn't too hot on the idea of resuming my TPN, which I think is really dangerous. I wasn't able to eat enough before, I'm sure I lost weight while being in here, and I really need all the extra nutrients I can get without force-feeding myself. These doctors just don't understand how scary it is for some of us. There's no way I'm going to miraculously start ingesting enough food without some TPN to help get me back on my feet.

Anyway, rant over.

 

[2thFairy]

Once out of the hospital, I was given Ensure to get caught up on nutrients and encourage weight gain. Glad you are doing somewhat better.

 

[Traumanurse]

I had a lousy recovery myself after resection surgery in June so I really understand what you're saying. Also, I was adamant that I was in charge of my own care post-op. I think they were all pretty happy to see the BI&$@h leave after two weeks. Ha ha. I ate liquids only for 4 days after the ng tube came out. Had TPN the whole time, then started regular food. It was miserable for two days after the food, but eventually got better after I got all the blood and so forth out of my colon.

Please just remember to keep walking. It's the real key to getting right afterward, and listen to your own body. Take enough pain meds to exercise and move, but not enough to slow down the bowel too much.

I wish you the best. Let us know how you're doing!

 

[Boloby]

I'm hoping to be leaving the hospital soon. Since my last post here, an MRCP discovered I have ascites, an overabundance of fluid stored in my abdomen. On Friday, doctors drained 4.5 liters of fluid. Up until that point, they kept insisting all my pain was just "gas." Now I know that I was carrying around all this liquid, which made it difficult for me to lift myself up to get out of bed (or do anything, really) and it must have been pushing up against other vital organs, causing further pain.

Now I just need to take the leap of faith and eat something solid. I'm still not sure what I want my first food to be, but I'll probably have an Ensure shake to transition.

 

[UnXmas]

I think the important thing is to make sure your recovery is linear. After I had a total colectomy, I was eating solid food the day after surgery and walking straight away. I gradually felt better over a few weeks, and the pain got less and less. But then I started feeling worse again, and the pain got worse too, to the point that it was hurting even more than it had been right after the surgery. It turned out I had an internal infection. Once I'd had antibiotics, the pain gradually decreased again. After about 6 weeks from clearing the infection I was pretty much back to normal.

It can vary a lot from person to person though. I wasn't allowed any pain killers other than paracetamol because they thought opiates might slow my digestive system down and lead to blockage, but my pain wasn't that bad most of the time. I would get really intense bouts of pain, which usually meant I needed the loo or had to pass gas (I know you said your doctors were dismissing your pain as just gas, but for me it really was very painful! Not dangerous, but very painful!).

Make sure you don't do any lifting or any type of movement that uses your abdominal muscles. After having abdominal surgery I realised just how many little movements involve those muscles! If the painkillers you can have aren't doing a good enough job, try a hot water bottle. I know it sounds inadequate compared to the medications, but it really does help, the heat relaxes all the muscles.

If you're not improving, get the doctors to check everything's as it should be. If they're telling you to walk, eat, etc. and it's causing you more pain than you feel it should, don't take it for granted that the doctors know what they're doing. When I had the infection, I knew something had gone wrong, even though the first doctor I saw told me that I just had to be patient and wait for things to heal. Luckily she took a blood test too, and when the results came back the next day she realised things weren't right at all. It may be that your doctors are right, and that in the long run it will be better if you keep active and eating now and you just have to work through the pain, but you don't want to risk them overlooking complications.

 

[Havasu12]

what type of surgery did you have?

i am sorry to hear, as yes can be very painful. Sorry for the long post...

My first surgery I had a total colectomy with Ileocolic Resection. As you describe very painful recovery, began throwing up bile a day or so before my release date but due to that I had to stay longer. My full recovery was BAD, way worse than my second surgery. First one was due to UC....

I was doing great and found stress is a major reason for a flare up, and due to a high stressful time i ended back in teh hospital and no one could figure out what was going on..I dropped to about 100 lbs. Finally after visiting several hostpital they found I almost had a blood infection, every organ was full of bacterial and I had many preforming ulcers. I KNEW SOMETHING WAS WRONG EVEN THO NO DOCTORS SEEMS TO FIGURE IT OUT, TOOK ALMOST 3 WEEKS, NEVER LET ANY UNCOMFORTABLE COMPLICATIONS BE OVERLOOKED, I ALMOST DIED TWICE THAT MONTH WHILE DOCTORS KEPT TURNING ME AWAY

Scripts in San Diego wouldnt even take my case after figuring out my infection. They sent me to USC in LA and diagnosed me, and two weeks later had 6' of my small intestine removed and partial of my rectom. They say anyone with a intestine surgery usually three years later there is a change of a flare up and another surgery. Why this is I have no idea.

Hang in there... I am still struggling with nutritian, energy and other sorts. I recommend stay up on hydration and your nutritian and keep your stress levels low. Good luck!