New to forum; looking for advice post surgery

Hello everyone,

My husband has Crohns disease, diagnosed at 17, currently 35. His disease started getting worse over the last couple of years. He has been on and off some medications, his last regimen was remicade and imuran. However, 3 weeks ago he was admitted to the hospital with perforated terminal ileum and had to have emergency surgery. The surgeons were able to reconnect him. However he had a complicated postoperative course due to infection and ileus (non-functional bowels) and spent 2 weeks in the hospital.

He came home 1 weeks ago; still getting IV antibiotics and has an open would in his abdomen with a wound vac device. During all this he lost over 20 lbs and just looks terribly ill, emaciated. Since he has come home, I expected him to get at least a little bit better everyday, but I just dont see it. This is where I got the idea to turn to this forum hoping for some advice, support and others experiences. All the bad things have been ruled out by his doctors, there is no abscess, his anastomosis is working well, no more infection. But he continues to have significant pain (he describes it as a spasm that comes on and lets go) requiring high doses of narcotics, he is exteremely weak, has terrible appetite, has a hard time sleeping at night but then exhausted during the day, his mood is overall down and hopeless. I try my best to be supportive, stay positive, encourage him, prepare enticing foods, take him on walks but all my efforts seem to produce no results.

I would love to hear other people's experiences if you have ever been in this type of a situation. How long did it take for pain to improve? for appetite to come back? weakness to start getting better? What can I do to help him? Was your mental health affected during this? How did you cope? What helped? What didnt? Any opinions and help is hugely appreciated. I love my husband and am willing to do anything to see him get better.

Thank you all in advance,
A concerned wife.

Hi lyoleek and welcome to the forum!

I'm sorry to hear about your husband's surgery but hope he'll recover soon. I have had a bowel resection and did have an infection and had to pack the wound for over a month. Wasn't fun. I'm told the wound vac takes a lot out of you as well so I'm going to tag Afidz as she's dealt with one before.

For me the pain was the first thing to start subsiding before my appetite or energy returned. I believe I was sent home with Vicodine but don't remember the strength or when I stopped taking it because my surgery was about 14 years ago. I remember laying in bed most of the time. I was in the hospital for 2 weeks after surgery then went home to pack the wound twice a day for the next month+. I think I was in bed most of the time for at least 2-3 weeks after I left the hospital. Around the 4-6th week is when I noticed more energy to move around but it took me a lot longer to get back to normal which I believe took a few months.

Surgery, infection, pain, lack of nutrition etc just saps your energy so you need a lot of rest and a lot of fluids. I drank a lot of juice, tea and ate mostly soup or stew that my mom made for me. She also gave me a bell to ring if I needed anything. Can't be in bed all the time though. A little bit of walking everyday helps to keep the bowels moving and to help slowly build up your strength. Most of the walking I did was back and forth from the shower so I could wash out my wound and remove the packing twice a day. I really should have moved around a little more than that.

Might also be a good idea to have blood work done to check his vitamin levels to see if he needs to supplement anything. Being low in B12 is very common when the ileum is involved as that's where its mainly absorbed so be sure to have that one checked. Fatigue is a common symptom for a B12 deficiency (not to mention low in iron etc).

Keep us posted on how he's doing and how you're doing. I know being on the outside looking in can be very hard. Feel free to check out our Partners, Family & Friends section here: http://www.crohnsforum.com/forumdisplay.php?f=90

Hi lioleek, welcome!
Reading your story is like relivng my experiences. I had a perforated bowel and had to get it resected but my complications didn't happen until a few years later when i kept on herniating the original incision and then everytime i got it fixed I had bad infections requiring the wound vac. It was probably because he had surgery while on Remicade that caused the infection (for me it was Humira) Is he still on Remicade right now? Being on it makes it harder for the body to heal but he may not have an option to stop it as Remicade can be hard to stop and start again.
If he isn't already, protein pack his meals, protein is gret for post op because it helps the body heal quicker. If he is smoking (you didn't say if he was or not, just throwing it out there) it would be advisable to quit. Tobacco restricts blood vessels, making it harder to heal. Like Jennifer said, get his blood levels checked, detecting defincies might help with mood and energy levels.
If your husband is like me, having a giant wound and carrying the wound vac around really does bring down spirits, and the best thing that you can do you are already doing. Just be supportive of him.
The wound vacs purpose is to suck out infection and promote new cell growth from the inside out, if the infection is getting better or already cleared up, you should be able to see a noticeable difference in the size of the wound every time the sponge is changed. I was eventually sent to a wound care center because my wounds were non-healing. They are very good at what they do in those facilities my wounds began healing again after a few visits. I would discuss this option with your doctor. Feel free to PM me any questions you have, I have pretty much seen and done all when it comes to infections and wounds.
I hope he starts feeling better soon!

Hi there, as with other posts I have experienced a very similar situation.

11 years ago (aged 14) I performated my small bowel as a result of crohns and had to have emergency surgery - which turned out to be a bowel resection (they removed part of my ileum). I had an ileostomy for 6 months which was then reversed though. After the initial large surgery I was in a high dependency unit for 3 days, then hospital for a futher 2 weeks. Initially even moving was excrutiatingly painful and even breathing felt sore at times. In this case recovery was slow and it took me really 1 year to get over the impact of both surgeries and back to normal.

In september 2012 I had open surgery (about an 8 inch long wound) for a stricture - a narrowing of the small intestine in my case. On day 2 of recovery I also got post operative ileus and was extremely sick, vomiting non stop for 2 days, I then had a nasal gastric tube inserted so they could drain my stoamch. after 2 days the ileus dissapeared and I started on liquids again for 3 days before trying pureed food. I took things slowly one step at a time. My wound was also obviously very sore and I was on Fentanyl IV drip as morphine makes me sick.

About 7 or 8 days after my operation They realised I had developed a wound infection, and so removed some of the staples to let it drain and so it could be packed. The infected part of my wound started out about 1 or 2 inches in length but after being discharged from hospital this opened up further and got deeper and longer. It was quite scary at first but the doctors and nurses reassured me that this was normal.

On returning home the nurses came and packed my wound and re dressed it every day for 2 weeks until I was able to go to the Dr surgery myself. Moving around at home was uncomfotable and my recovery took quite a while but I made the effort to walk around a little bit every day and keep the body moving a little. I also just got lots and lots of sleep and kept taking my pain medication.

My wound took about 15 weeks to fully close after surgery and it was a long process. but after about 6/7 weeks I started feeling a good bit better. try and be patient and things will improve. Your husband has been through a big operation so dont underestimate the impact that can have on your body. It will take many months for him to fully recover.

The healing process takes a LONG time. Use the pain meds as often as required and if they are not working ask for stronger ones, but some discomfort is to be expected.

All the best

Luke

Hello and welcome to the forum.

I am sorry to hear your husband has been so unwell, I have had an op myself but did not experience any complications and was able to recover well although I did find it initially harder to sleep at home than I did the hospital because I could change the angle of the hospital bed to the optimum position for comfort to sleep on my back - does your hubby find he is currently getting backache at night at all? Where exactly is the pain - the incision site itself or somewhere else in the tum? Is he on any meds right now for the crohn's? When is he next due to see his doc? I am wondering whether it is worth looking into liquid shakes or an NG tube food so he can get the required nutrients ans calories into the body to help build up his strength but also to rest the tum whilst it recovers from the op. Also do check out our surgery sub forum as the folks here may also have some experience and advice to share regarding this: http://www.crohnsforum.com/forumdisplay.php?f=71.

Wishing you both all the best and please keep us updated on how things go.

AB
xx

I don't have any great advice but wanted to welcome you and I'm sure more people will be along soon who do. You're in the right place, the people here are very smart and supportive. Good luck to you and your husband.

Hi there and welcome!

I'm so sorry to hear about your husband. That's so rough

If his terminal ileum ruptured that tells us that it was very diseased and probably wasn't functioning correctly. I realize this sounds weird, but the next time you're in to see his doctor, ask them to test his vitamin B12 and magnesium levels. The terminal ileum is where those are primarily absorbed and severe deficiency can cause a whole host of symptoms.

Obviously there's more going on here than that, but every bit helps.

We're here for you!

Hi, so sorry to hear about your husband's troubles.

I haven't had the same surgery that he had, but I've had several and one was quite major abdominal surgery.

To give you and idea of the operation, it took about four hours and was planned, not an emergency. My experience is that recovery should be linear. I did gradually feel better over the course of a few weeks. Then I started feeling worse again. It turned out I had developed an infection. After getting anti-biotics, I started getting gradually better again.

If you're not seeing any improvement, I would really go to the doctors and get them to make absolutely certain there is still no infection or anything else that's hindering his healing.

It may also be worth asking for medications to help him sleep and eat during the recovery, if he's not on any already. Food and rest are important when recovering.

Everyone's recovery will be different, but I think I began getting some energy back after a few weeks, then I was set back by the infection for a couple of weeks, and then felt more or less back to normal two or three months post-op. My surgeon did say that I recovered remarkably fast. I always have a poor appetite anyway, though it was worse than usual after the operation. It took a couple of weeks for me to be able to eat without feeling really nauseous. The pain took the longest to go, but again this will vary hugely depending on the nature of the operation. So while the time frame isn't really possible to predict, the most important thing I think is that you should see continuous improvement even if it's very slow going.

I've only been in the position of being the sick person, not the partner, but I know my parents were invaluable to me when they were caring for me post-surgery just by being there. It sounds like you are doing everything you can and by being so supportive you are helping your husband. I read once that many people feel depressed after a big operation, especially if it's unplanned. It seems to be an inevitable reaction for some people, because of the shock they go through when it all happens so suddenly. His depression will pass though, it just takes some time.

It takes awhile to get over an operation like that. I was in the hospital for two months after my last surgery and I had zero appetite which wasn't helped by the pain killers. I needed the pain killers, though, because it was an extremely painful recovery. Going to the bathroom was agonizing and I had bile acid diarrhea which made it worse. The surgeon never suggested a medication and just said to wait it out, but once my other doctor put me on Questran powder, things turned around significantly. Did the surgeons remove his ileocecal valve? That changed how I digested food and how quickly it ran through me. I no longer had the ileocecal "brake" and eating was an unpleasant experience because I knew I would have more diarrhea and spasming which would then irritate the hell out of my internal surgery site. My husband gave me some space during this hard time and I hated that I was so depressed. I found that drinking Coke helped settle my stomach and helped me gain back some weight. Ensure also helps and you can freeze it and eat it like ice cream. I would ask if your husband was nauseous and then make sure that was addressed with either Zofran or phenergan. It's hard to eat when you feel so sick.

I hope this helps. Hang tough--you'll have your husband back but it might take a few months. Sometimes the emotional recovery from such a painful experience takes awhile to recover from, too.

Thank you everyone for responding and sharing. This helps a lot. Just knowing that others have been through this and that what he is going through is normal is extremely reassuring. I wish I would have found this forum years ago.

I forwarded this site and thread to my hubby and I can see that it helped him tremendously reading all your replies.

He is very slowly but surely taking steps in the right direction. His appetite is slowly coming back (has even made a few requests!). He doesnt suffer from nausea, but does have bad diarrhea. His ileocecal valve was removed with the surgery so your suggestion of Questran is great. I will also ask his doctor about checking his vitamin levels. He has been up and about more, taking our dog on walks. His PICC line came out fri. Still has the wound vac, so far the wound is healing well. His mood is cyclical; some days better than others, which is completely understandable. At least our 18 mo old son can still get a smile out of him. I will keep updating his progress as we go along.
We will be following up with his GI in a week and will talk about maintenance meds. His last dose of Remicade was given early Jan, so he is due early march but I am not sure what will be the plan since he is still healing.

Again, thank you everyone so very much.

Hello Everyone,

Thank you all to responding to this post. I am the husband in question . I have had a really tough time going through the recovery both physically and emotionally, but can with confidence say that I could not have gone through with this without the amazing support of my wife, to whom I truly owe my life.
I am happy to say that I am doing much better both physically and emotionally. I am in still quiet a bit of pain, mostly cramps in the lower right quadrant, and sad to say that am still on narcotics and having a difficult time getting off them. The problem with that started a few years ago since I have had a herniated disk for which I had L5-S1 fusion surgery done just 6 weeks prior to this operation and have been on pretty heavy meds for about 3 years now. I am seeing a pain specialist who I am hoping will help me get off the drugs successfully.
As far as my depression... My wife has been a blessing in the sky as to listening to me whine and bitch and refuse to get out of bed. She has helped tremendously for which I am forever greatfull. I am still bombed about everything... About how helpless I am/was, what a drag I have been on my family. When my wife snuck in my son to the hospital after2 weeks, I just hugged him and cried uncontrollably for 20 minutes. Not normal for 35 yo guy. I still can't have a conversation about what happened with my wife without sobbing. At this point in time I'm throwing in the towel and going to see a shrink. I can't bare to be like this any more. I have no desire to go back to work and I think if not for having a dog I would not leave the house.

I will end on this note... I thank all of you for your support and suggestions.
Steve

Thanks for responding Steve!
Its great that you have someone so supportive to help you through all of this. It really makes the world of a difference. I hope the pain doctor can help you get off the narcotics, I know of a few people personally on here that are either in the process or have gone through it recently and I wish you the best. Its also great that you are going to see someone to help with your depression. I think acknowledging the problem and be willing to accept help is a very healthy start to healing, and I commend you for that.
I posted above sharing my experience with a wound-vac. There isn't too many people on here with experience with them. How is your wound doing? Do you still have the vac? Is that where your pain is coming from?
I look forward to hearing from you, I really understand what its like to be in your shoesm and I wish you the best in all aspects

Thanks for letting us know how you are doing Steve, whilst I have not had pain meds myself I have seen my mums struggle with coming off both liquid and tablet form morphine due to big issues with her back that required an op which then upset her arthritis. She had to be referred to a pain clinic to get off this and has managed it so there is always hope. Councelling did help her so I can only encourage you to follow this up. Also out of interest what meds are you currently on for the crohn's itself? Please do keep us updated on how you are doing.

Hi Steve,

I'm glad you're doing a bit better.

Obviously what you're going through is traumatic and depressing. On an emotional level, I think most people would be depressed. However, deficiency can be making those feelings even worse. Please get your vitamin D, vitamin B12, and magnesium level tested to make sure they're not contributing. People with Crohn's disease are commonly deficient in them and if you've had part of your terminal ileum removed, the chances are even higher. Yes, see the shrink, but make sure there aren't other contributing factors (I bet there are).

All my best to you bud.

Hey Steve, I had a small Bowel resection and went through many of the same things. First I'd like to say all the people who responded gave you great advice. Post surgery blood work showed I had very low b12 levels and I've been getting b12 shots ever since. It will definitely help with low energy. Also like you I had constant diarrhea after my surgury as well and I was super depressed. While diarrhea was something I was used to, having it constantly after every meal made me question if this would be like this for the rest of my life. Fortunately after seeing my surgeon for a follow up he prescribed questran and it was a life saver. I take it before every meal and my diarrhea is now very minimal. If you do get questran request sandoz brand it is by far the least repulsive flavor but a bit gritty. Just to repeat what some others have said, go slow on the solid foods, eating smaller meals more often is much easier than eating big ones. Liquids, liquids,liquids. Drink them often as they aid digestion and help fill you up and keep you from overeating when you get your appetite back. Stay away from artificial sweeteners as they can cause and exacerbate diarrhea. Also your mental well being will go a long way to help you recover physically. So get some help and try to find the positive stuff everyday no matter how small. Stay strong and remember you are not alone. Things will get better as time goes on.

Hello all,

It is Steve again... Wanted to write an update on my condition. Since my last post my condition has not gotten better. I kept having the same excruciating pains as I did prior. I had about one CT Scan every ten days to see what's going on, that showed nothing. I had a small bowel follow through which also was inconclusive. The pains continued!!! The right lower quadrant (rlq) of my abdomen felt hard as a rock. When anyone asked what I thought it felt like I would say it was a like a bunch of intestines matte together.(weird) In the beginning of April the pain landed me in a hospital for ten days where they repeated all the tests that I hAd in another hospital, even-though I brought all the images with me. ( it seems everyone seems like their CTs and MRIs and radiologists are better then anywhere else) None of the studies were conclusive, although my GI was sure he saw a leak on one. He is also the same GI that thought that I should have been diverted and had and ileostmy put in from the beginning. (I had my surgery in a local hospital done by non-colorectal surgeons as this was an emergency and my GI is from a big university hospital - Northwestern Memorial Hospital (NMH) part of northwestern university in Chicago.) So he started pressing that I needed the surgery redone and have an ileostomy put in. I almost agreed.
My wife happened to do her residency at NMH and still had some connections that she called and found out that the surgeons that my GI used were "butchers". At this time we requested a consult of a different surgeon and NMH who we knew was good and had years of experience and excellent outcome. After several consults we were almost ready to pull the trigger until we found out he doc is CASH ONLY. My heart fell to the ground.
Because my GI doc was moving to Kentucky in beginning of June, I started looking for a different GI and was highly recommended Dr Rubin from U Of Chicago who specializes in IBD. (Blessing in the sky)
Getting to him was not. My wife pulled some strings with docs she's worked with and Dr Rubiin himself calls me and says you need to get admitted. (This is on 5/2/13) I said I am game and get admitted.
I bring with me 12 discs of different studies which they had their own guru radiologist reread and then have me REPEAT ALL THE STUDIES AGAIN!
Again, studies are inconclusive! The surgery consult comes in and says that it seems like there seems to me some improvement between the CT from march to the one in may so we can wait and see or she can do an "exploratory" surgery and see what is going on. She is thinking surgery should take 2-3 hours tops.
I figured I'm done waiting. After consulting with the only doc I trust, my wife, we decide for surgery...
5-15-13 I go in for surgery... 7 hours later the surgeon comes out and says that she is sure that was a tiny little leak that made the small bowel cling together and get all matted up with puss. (I WAS RIGHT) after about 3 hours of trying to untangled as much as the docs could to save as much as they could they take out the mass.... Estimated at 10-12 feet!!!

If you read above, I have been on narcotics for chronic pain for a very long time, the post op pain control was UNBAREABLE. Nothing they gave me worked. They gave me 3 cc of Deloted every 15 minutes and nothing. I was in agony! I didn't sleep first night at all pressing the PCA button like a mad man. The second day they gave me a thoracic epidural which helped a lot but for only about 3 hours because it was placed laterally (on the side). At night they try again, this time they sat me up, I thought I would die from pain. The epidural worked even better because it reached higher where the docs used the retractors to open the surgical field. This time it worked for 8 hours and because the surgical team thought I was going home in about 3 days they didn't want to try the third time. I WAS LIVID. I was in pain, I could not breathe because my ribs hurt from retractors. Begged for more meds and they were not very forthcoming. 6 days after surgery they said if wanted to i can go home... IF I WANT??? I was so pissed off, I figured they aren't doing shit for me for pain anyway I may as well go home to my beautiful son and my amazing wife who was there for me every chance she had(hospital is 60 miles away from home)
It just happened that my wife decided to surprise me the day they were discharging me by bringing my son.... Again, I hugged him and sobbed uncontrollably. She didn't even know I was getting discharged so we waited and went home.

Now the fight is back on. Mentally I feel a bit stronger then I did last time, but physically I am a complete mess. I lost anther 20bs since last surgery now totaling 55lbs down. I'm a 6' guy, who used to be 245 my senior year in high school who is now 130lbs. Eating is a chalange, so is walking. Everyone says eats small meals often, and I get the idea, but I can't follow through although I try. I drink shakes with protein and ice cream and even add half and half to add fat. I'm trying everything I can. The diarrhea is nearly crippling. It seems like my output is 4 times my input.
The pains are awful and often keep me awake at night.
The meds the hospital send me on are bullshit, so I called my pain doc who I have been with through the back pain and the first surgery and he is adjusting them today 5-29-13.
I am trying not to be much of a burden on my wife which I still know I am. And guys and I really can't even begin to explain what a jem she is. She is the love of my life without whom I would probably not be here today, and I am forever grateful to her.

Well that is my latest...

I appreciate everyone's support. You guys have been amazing. THANK YOU!