Post Surgery Advice Please

[jazmac]

I have had crohns for 10yrs. Prior to my diagnosis I had cutanueas lym phomia which is when the gut symptoms started. Initially I was diagnosed due to symptoms and poor blood tests (which I now think weren't that bad). I went thru every medication possible with very little success and some adverse reactions. I have not tried Infliximab due to it's increase chance of lymphomia but have tried all others including trials. In 2005 I wanted some more definitive answers so decided to have pill cam. Which got stuck ( i have since read there is procedures avail to avoid this). I was then forced to have surgery to remove. They did a stricturoplasty and I my symptoms went dramatically downhill so 3 months later I went back and they removed 60cm of my SI (jejenum). I would consider the surgery unsuccessful, since then my symptoms have been extreme D, pain, severe weightloss, malnourishment and all that goes with that including odeama, severe mouth ulcers for the last 2 years and I now have red blotch above my lip which they say is cutaneos crohn's.
It's got to the stage now that I have severe stricturing and partial blockage and more surgery is inevitable. This surgery will be laproscopic at first to see the degree of strictures, then cutting open strictures and then removing some bowel if there is an inflammation mass. I am trying to approach this with a positive attitude and am looking at it as a new lease on life.
I have a fantastic naturopath/nutritionalist. I am on protein shakes every day as well as many nutritional supplements and low fibre, limited wheat diet.

MY QUESTION IS : CAN ANYONE SUGGEST ANY MEDS, FOODS, SUPPLEMENTS, EXERCISE THAT THAT YOU HAVE FOUND INCREASED THE CHANCE OF SUCCESSFUL OUTCOME POST SURGERY.:rosette1:

 

[Jennifer]

Successful outcome meaning to stay in remission after surgery? Just remember that Crohn's Disease is a chronic illness and no diet, exercise or even medication can keep you in remission forever as there is no cure. Generally we try to stay away from foods that trigger our symptoms so say if eating a raw apple with the skin gives you diarrhea, maybe it'd be a good idea not to eat it at all or at least keep that particular item limited. My doctor always suggests a low residue, low salt, low spice, low delicious diet such as white rice with steamed veggies (no skin) and baked chicken breast (no skin and white meat only so only the breast and white fish is fine too). As far as exercise, walking, swimming, light jogging and basically anything your body feels comfortable doing so if it hurts then don't do it (wait for healing of course). As far as meds and supplements, your doctor will know what's best for you. I was taking 6MP and Asacol post surgery (I don't recommend not taking medication, still a chronic illness) and I take B12 as I've had my Ileum removed and my B12 is low (have blood work done to find out if you're low on B12). Hope this helps. Good luck to you!

 

[Zalanicht]

Only thing I can suggest is you have more then a sufficient amount of pain killers to carry you through till the surgery pain is gone. Better to have too many pain killers then too little which is what happened to me. I suggest a heating pad for your back cause that really helped me out a lot as well.

 

[DustyKat]

Hi jazmac and :welcome:

Whoa you have been through a lot! Do you take any medications??

My daughter has had 60cm of small bowel removed, terminal ileum, and has been left with short bowel syndrome, she has 5-7 very loose bowel motions a day. I know Questran would work in reducing the diarrhoea but she doesn't like it so plans her eating around her day and seems happy to it this way. She has been on a maintenance dose of Imuran since her op four years ago and this has helped her to maintain remission. She also has B12 and Folic Acid supplements. She has no dietary restrictions as such but knows herself which foods don't agree with her. As far as exercise is concerned Roo thinks walking from lecture to lecture at uni is more than sufficient! :lol:

Stick around and please keep us posted with how you are going. Welcome aboard!

Take care,
Dusty

 

[jazmac]

Thanks for all your helpful insights. The docs have also stressed the importance of meds post op. They are suggesting Methatrexate or Infliximab. The surgeon has said he will check with my heamatologist re lymphomia connection to infliximab. They explained that these meds will be more effective once they have removed the strictures. I am fairly careful with my diet but do have a weakness for lollies and choc, why do they taste sooo good. I also plan to do a food diary after to be able to monitor what causes any upset. I have the books Listen to your gut and also Eating right for a bad gut and will take bits of advice from both these. I remember the heat pack is really important but had an awful nurse after my last surgery who wouldn't heat it past luke warm cause she said it was a safety issue. Just hoping I get nurses who like their job.
Thanks again :ghug:

 

[Zalanicht]

I can suggest Aza as a post op maintenance drug. Ask your doctor about it.

 

[Dexky]

Hello Jaz, welcome!! I can't really add to the advice you've been given except maybe check out the Food and Diet section of the forum for more advice!! Good luck!!

 

[jazmac]

Thanks for advice will check out foods section. I may even post some recipes I have modified to suit me. I love my food. As for Aza after taking one dose I ended up with extreme fever (42 degrees). I am inspired by your remission comment and hope I can be posting the same comment in the near future.

 

[vgk17]

Pray, breathe, and visulization do help...a complete gluten free diet helps me, and when im feeling bad, given my colon time to rest is important. soft foods, but not processed foods ever, we never want to give our digestive system a reason to work harder that it has to. Be well!!!