Back on meds - surgery in 6 weeks

[hm_uk]

Well, I had a good long remission, but as soon as I came off Prednisolone, I relapsed. I spent probably 9 days of the 2 weeks of my holiday in France vomiting and lying indoors.
So I went into hospital as soon as we got back and was in there for 1 and a half weeks, and was discharged on Wednesday. I am now on 60mg of Prednisolone, which is coming down over 6 weeks, as well as a modulen-only diet.

I am going to have surgery in 6 weeks, and I talked about with a surgical team in hospital, but I still have a few worries.

- The surgeons said I might need a stoma, but it was fairly unlikely. Will a modulen-only diet for 6 weeks help in decreasing the chances of needing one? [Please be honest about this one - I have done modulen for 6 - 8 weeks before] Will I probably need one?

- The surgeons said I would be able to eat normally in a couple of days after the surgery. Obviously I trust the surgeons, but confirmation from anyone with experience in this area would be very helpful.

- Is it generally good news that I am going to have surgery? Can I hope for a long stretch of remission?

- I have also ready that Prednisolone has muscle-wasting effects. I am quite keen to regain my body mass after losing so much weight - but is it only worth making an effect when on lower doses of Prednisolone? Can I still get my muscles to grow?

Thanks,
-Henry [15 years old]

 

[archie]

awh Henry thats a lot to take on board at your age. I'm noy sure about the diet your on I havent heard of it. I can comment about the surgery though I had it in Nov and recovered well after I was able to eat pretty well a couple of days later I just gad to avoid fibre for 6 weeks. You should be able to work at gaining muscle mass once you get into remission, thats the one good thing about muscles you can build strength in them quite well if you work at it but not too soon listen to youe body and let it recover first. I think the chances of requiring a stoma depend on the amount of damage already in the bowel and which part. If you've a lot of healthy bowel then chances are they;ll be able to reconnect the 2 ends with little problem. Some people require a temporary stoma to allow the bowel to heal. You could ask the question in the stoma section as they might be able to advise you better. Anyway good luck with the surgery i've been in remission as have many people since.

 

[Carrie]

Hiya, Henry! I think the surgeons like to prepare people for the "worst," which is why they mentioned the stoma possibility. I just had surgery two days ago, and they told me I might need one, especially given that this was my third surgery. Turns out I escaped it this time, though it didn't sound too scary. Maybe it was just how the stoma nurse described it.

Yesterday, I was allowed free fluids, meaning the first day after my surgery I was allowed to drink whatever I like. Not sure when I will be allowed to eat, but I imagine it should be within the next day or so. It depends on when your gut wakes up and starts working again.

I don't think the Modulen will reduce the likelihood of a stoma. I'm guessing the main reason they have you on it is to rest your gut a bit before the surgeury and to keep your calorie intake up. To be honest, I don't know how you can manage it. I was on it for two weeks and it made me sick, and they threatened to put me back on it when I came here to St. George's, but luckily the surgery came first!

The surgery should give you some remission, but how long it is depends on your case. I enjoyed five years between my first and second surgery, and 12 years between the second and third. I'm hoping for 20 plus before I'm due for another.

I'm curious, have your consultants tried any biologic drugs (Remicade/Imixifib or Humira)? Surgery is generally a last measure when nothing else is working, or the problem is scar tissue and can't be treated with drugs.

 

[hm_uk]

5 years of remission sounds fantastic - considering the prednisolone only gave me about 3 - 4 months. A shame to hear about your own repeated surgeries, although I really hope you get your 20 years of remission.

The doctors believe it is scar tissue, which I believe is why they intend to perform surgery. As far I know, the scarring isn't too extensive, around the terminal ileum and a little in the small intestine - will this help my chances of not getting a stoma/good recovery?
Modulen isn't that hard, I find - I have a special ratio of chocolate - vanilla flavouring that makes the taste quite bearable - and it tends to fill me up so much I don't crave food that bad.
And they have suggested none of the drugs you have mentioned - one doctor did mention Azathioprine, but that has been put to the side for now. Do you have any experience with those drugs?

[I should have put 16 years old - last time I was on here I was 15, but my birthday has been since then. ]

 

[DustyKat]

Hi Henry,

With the Pred and Modulen the docs will be hoping to reduce the inflammation as much as possible prior to surgery. If they achieve this then you shouldn't end up with a stoma. The reason people end up with a temporary stoma is because the inflammation is too extensive and they want to preserve as much bowel as possible, plus you can't join inflamed bowel ends together. The docs will always mention a stoma to you because they can't give a 100% guarantee that you won't have one, they will always go in with the best of intentions but they don't truly know what they will find until they get there. My son had surgery in April and although a possibility he didn't need one.

My daughter had surgery 5 years ago and has been in remission since. My son was on Pred before surgery and he was very poor condition. He is 4 months post op now and has regained all the weight he lost and more, 13 kilos, he is also building muscle again and is back to playing 2 full soccer games on a Saturday.

They both have ileal crohns and are on Azathioprine as a maintenance med. I think you may find that the Remicade type drugs aren't suitable because of your scar tissue. These type of drugs can produce healing that is too fast and in doing so produce even more scar tissue.

Good luck hun, I think you will do just fine.

Dusty. xxxx

 

[Grant]

Hi Henry, good luck with your surgery. Hope it all goes to plan & you feel better soon.
My 1st surgery back in 1997 I was not allowed to eat for 6 days after it. last one in August last year it was 2 days. Its all about getting things moving & back to normal asap & the sooner you are eating & passing stool the sooner you can go home.
I tend to need an enema to get things going but once that's taken effect I'm off & running & homeward bound.
Its amazing the way things have changed in the space of 13 years, for instance being admitted the day before a surgery-a thing of the past. I don't remember getting out of bed for about 4 days the 1st time & as such got terrible bed sores, last time I was up & walking within a day. Got to be a good thing IMO.
Rgds
Grant