Surgery help?

[Willowcat05]

Hi

Just been to hospital to see Jacks GI been told that his MRI scan shows right side colon,ileum is badly scarred and inflamed GI going to have an meeting with surgeon in July to discuss taken the right side colon and ileum away. Jack finished his 8 week course of Modulen in May and gained 16lbs which he has kept on which is good for him last time he had Modulen he lost weight right away Has any of your kids had this surgery and has it helped them?


Meds

azathioprine 50mg
Ferrrous sulphate 200g twice daily
Centrum multi vit
:sign0085:

 

[Bubbly]

Hi,

My son had a planned illeosecual (!) surgery planned last may, due to narrowing, however in the time it took to get him in, it had healed and he had the less invasive surgery strictoplasty to widen the areas. Overall a good outcome for him.

The surgery you mention i am sure somebody will come on who has experienced this and will offer the right advice.

Sounds like the Modulen worked really well and a great weight gain for him, how old is he?

Son also on azathioprine - 75mg

How does you son manage the ferrous sulphate? Mine can only manage 1 every other day anymore and it really upsets his tummy!

Regarding surgery, we did lots of reading and talking to various other people, also wrote down loads of questions, and spoke through all the options available, and the surgeon spoke to my son to make sure he understood what was going on and it was also what he wanted!

Please keep in touch and let us know how things go x

 

[Willowcat05]

Hi

Thanks for replying Jack is thirteen will be fourteen in August but really small for his age 142cm and not hitting puberty yet. This is why GI think surgery would be best for him so that he has a chance to grow if colon and ileum is taken out. He has managed well on the iron tablets no side affects.

Hope your son is keeping well .

 

[DustyKat]

Hey Willowcat05,

Thanks for the updating but so sorry to hear that Jack is still having problems, bless him. :ghug:

Both of my children have had ileocecetomies, so just a little less of the large bowel removed than what your lad may be having which would be a right hemicolectomy.

My daughter was 14 when she had her surgery. She was undiagnosed at the time so we had no idea what we were dealing with but once she was on the table they found she had Crohn's and it was severe. Up to the time of her surgery she had lost weight and didn't even look like she was hitting puberty. She was in very poor condition so her recovery back to full condition I estimate took about 6 months. I would say she hit about 80% after a couple of months.

Once she was at 100% puberty kicked in hard and fast and the change in her was astounding. I think she did about 3 years developing in 1!

Sarah had her surgery on the 10th July 2006 so we are just about to hit the 7 year anniversary and she has been in remission for all that time. She does have issues with bile salt malabsorption diarrhoea due to the amount of ileum removed but there has been some natural take up over time and for the remainder she uses psyllium husks.

My son's surgery was planned and was needed due to complications, fistula and abscess x2. He was 17 at the time so for him puberty had already commenced but post operatively I did see much quicker development happening. His resection was far more conservative than Sarah's, 28cm compared to Sarah's 68cm but he also has some of the diarrhoea issues too and uses psyllium to great effect as well. He has also been in remission since his surgery which was in April 2 years ago.

They both have Crohn's which is confined to the ileum. They also take Imuran as a maintenance med and my son's new GI has just added Pentasa to his meds.

If you have any questions please don't hesitate to ask. Good luck!

Dusty. xxx

 

[Sascot]

My son has only had surgery to drain and remove diseased tissue from an abscess, so no great advice there, sorry. Just wanted to send my best - hope the surgery makes him feel so much better.

 

[Bubbly]

Hi, similar ages! Son turned 14 in February, current weight 40kg and height 145, so again small for age and no puberty either, which have to admit not worried about, as eldest son was late and appears to run in family! We have seen a big weight gain while on infliximab, approx 5kg since February, which is excellent for him.

Still have concerns over his height, which they have mentioned will be discussed in detail next year! Think this might me growth hormone treatment! Not even thinking about this yet, to much going on at the moment. He also needs a brace which means removal of 4 teeth, have been putting this off also, but needs to be done!

Keep in touch and all the best x

 

[awmom]

Hi Willowcat,
my son, age 17, just had his surgery in March. They removed 12 cm of ileum and a bit of colon. He was very under weight (92lbs) before the surgery and lost more during the surgery/recoup period so it's fabulous that your son has put on some pounds beforehand!! It took several months, but he has now gained his weight back plus a few more pounds so we feel he is on his way to normalcy.

I remember being so scared before (and after)the surgery, wondering if it was absolutely necessary or the right thing to have done, but now I think it was the right decision. My son's appetite is better, and he can eat a larger variety of foods without them bothering him. He is still on Remicade as a maintenance med.

The very best luck with this tough decision. Keep us posted.