Operation offered after only just been dignosed with crohns ??

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My son is 22 he's only been diagnosed with chrones he's been treated with prednisone since September since he found out started out on 40 ml but when getting down to 20 he's back in hospital he's been admitted 3 times since September and has a stricture that's 7 cm they was ready to try him on Humira this week. but he's back in hospital has he's in so much pain he's had a ct scan yesterday that shows a mass that's inflamed with the stricture now there saying they think it's best to operate But it's a really big op and are sayin that sometime medications don't work but they have only tried him on prednisone . ???Are they jumping the gun on wanting to operate ???any replys would be great full

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  • Posted

    I do tthink they are. From what i understand the medication will not treat scar tissue and it seems this it what they think. I was on pred from sept through to november and it did nothi g at all.

    I had a right hemicolectomy in oct. 22 cm small bowel, 4 cm cecum and 9cm of colon.

    I have to say the pain relief has been brilliant and i can eat again. Gained weight . and was told id have died without the surgery. I had tpn for a few weeks also.

    So yes, meds dont always work. And different meds work for some not others.

    The risks of rupture of the bowel are real. And he should feel so much better after his surgery.

    I wish you both the best.

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    • Posted

      Hi I am really pleased you feeling much better can you tell me was your op key hole or major surgery also did you need A colectomy after your op ? Sorry sorry many questions
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    • Posted

      It was open. The scar isnt much bigger than keyhole.

      It looked huge buthas shrunk right down.

      I had a penrose drain no bag. He did the hemicolectomy to avoid need for a bag.

      The op took around 2 hours i believe.

      Afyerwards your bowel is asleep, so i wasnt on enhanced recovery, i was allowed just tiny sips from the wednesday till the sat, moved onto soup icecream on the tues i was allowed a light diet and came home the wednesday. Gut woke up the saw post op pain was worse days 1 and 2 but i declined the epiderual so i can.only blame myself.

      The first 2 weeks were uncomfortable and i still get random stabby pains and loose stools. BUT its nothung compared to the pain i was in.

      Im sorry your son is facing this. And i appreciate as his mum, its worse watching.

      My daughter is 21 so near enough the same age. It makes you feel so helpless.x

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  • Posted

    Im typing on my phone hence all the mistakes i do apologise!

    I was in 18 days.

    10 for pre op tpn

    8 for post op

    Are u uk or elsewhere

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  • Posted

    So sorry to hear he's so poorly again.

    I think the op is the only way forward from what you've said. All the meds need to be taken over long periods to have any dramatic effect on symptoms and sounds like your son is in an acute phase. They would only operate if absolutely necessary and sounds like he's at risk of a bowel rupture!!

    Which part of the bowel is the problem?? 7cm is quite small if they can resection and afterwards he can look into starting meds once he's recovered.

    I've had three resections over 25 years. The first was 12 inches in the Terminal Ileum.....I've since lost all of the Ileum and currently take Humira....successfully.

    I really hope they sort your boy so he's out of pain.

    Hannah

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    • Posted

      Hi and thank you for your reply. It's in the terminal ileum and a little on the end of the large bowel There pushing him for surgery but he's really concerned about wearing a stoma ( bag ) they say they think it would be for 6 months and can be reversed but say they can't say if it could be perment or not ? They say because he's bowel is weak with use of prenisole for so long I would like a second opinion it's a big operation to say they have tried no treatment I would love to see him out of pain but he's so again having a bag

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    • Posted

      I totally understand his fear of a stoma. I am surprised that he would need one if they can resect the bowel in that location and imagine that it would be an ileostomy (higher up in the intestine) rather than a colostomy. Either way, have you asked if it is possible to avoid a stoma all together??

      I remember all those years ago when I had my first surgery, I wasn't much older than your son, and I was terrified of having a stoma.....but I was also terrified of the steroids!! So much so I chose to live with 12 inches of stricture for 3 years until I'd recovered fully from emergency diagnostic surgery. I learned so much about diet, trigger foods, alternative therapies and particularly the MODULEN IBD liquid diet as a serious treatment for active and very painful disease. The liquid diet meant I managed to avoid the steroids for years.

      However, surgery was inevitable as the stricture caused so much difficulty eating. Weight loss and pain becoming intolerable. I managed to avoid the stoma altogether and 3 surgeries and many years later am still stoma free. But sadly with this disease it is always a possibility and I take heart that there are many people out there that have had their lives transformed for the better because of a stoma. It seems it's a life changer and one that, although damn scary, can really make a wonderful difference.

      Maybe when it comes to a stoma we all have to be philosophical and see the good it can bring......the reality is they actually save lives.....and maybe make us better people as a result!!!???!!!

      Whatever the outcome of surgery your boy just needs to remember he is who is, be brave and trust that all will be good in the end.

      Hope things get better for you soon.

      Hannah

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  • Posted

    I agree with hannah. Perhaps the bag is worst case scenario.

    Steroids since september isnt particularly a long time at all either.

    However, a stoma may literally save his life. A ruptured bowel is no joke and potentially fatal. So a stoma is a very small price to pay.

    Steroids pose a surgical challenge as the delay healing. Well thats what my surgeon told me.

    Youve had quite a fast rollercoaster of events, its difficult to get ypur heads round.

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    • Posted

      Hi thank you for your reply. it's really hard not knowing what to do for the best. The doctor is putting pressure on for the op He's saying it can' not be done keyhole ? My be because of the mass/ cyst/ tricture. I am not sure. ? I am reading on other sites that normal resection in that area. can be done keyhole and no stoma. Required ? there telling me they advise the op it but he's not on intensive care only on a pre op ward and only monitoring he's blood pressure/ temp. Twice a day ? There not re scanning him either I thought if it was that serious they would moniter him more closely I am really worried about making the wrong decision and he's so up set about the stoma situation has they say They can't gaurantte it will be temporarily??

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    • Posted

      The way it was explained to me, open is literally slightly larger wound and recovery is slightly longer. The bag may not happen, and they dont ever seem to commit to anythung when pressed because they leave themselves open to law suits i think!

      I doubt they will rescan him, and usually all you do get it obs and fluids. Open surgery means they can inspect better and with his mass etc they perhqps dont want to risk any complications. I wasnt given the laparoscopic option either.

      I understand his concerns about a stoma. Maybe you could ask for the stoma team to see him? Have they indicated when theyd like to operate?

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    • Posted

      If its any comfort I've had two open surgeries and two keyhole and in all honesty I couldn't rate one better than the other. The first keyhole surgery for me was the worst for pain and recovery. And it had to be redone a few years down the line by a better surgeon. Also, on that second keyhole they discovered it wasn't a stricture but a fistula causing the problem. Something that all the tests and scans didn't reveal.

      I imagine they want to perform open because they need to be absolutely sure what is going on internally and do not want to put your son at unnecessary risk. (Keyhole surgery is quite risky for causing internal damage without realising it immediately).

      Perhaps it's time to accept that surgery is the way forward. It's so difficult when your very ill to be calm about making such big decisions. Can you see if there's a nurse specialist or someone from Crohn's & Colitis UK to have a chat with you both. Sometimes the medics forget we have very real emotional needs. Often when these are observed and met it makes things that bit easier.

      If surgery is to go ahead you both need as much positive energy as you can muster.

      Xxx

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    • Posted

      Thank you for your comments it's nice to speak to people that's been through similar situations and gives me a better out look on the situation xx

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    • Posted

      Hi just thought I would let you know how's he getting on there going to post pone the op for 4 weeks until he's of the prednisone he's on 2 different types of antibiotic for the cyst he's not in any pain at the minute that is good he's still in hospital they need to remove the cyst and 7 cm stricture but now I have just add a lady tell me she had part of her terminal ilium removed and now suffers with terrible problems because of bile salt malabsorption. What I have read can cause going to the tolilet a lot I am now worried this could happen and had to he's probloms has even tho he's has been dignosed with crohns he gets no dirrohea what so ever. So to be left with this after the op would be a nightmare for him

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    • Posted

      Hi Natalie

      Yes I did and still do. But I use something called Questran which is a powder that mixes with water (it's a bit yukky) but it binds the bile salts and controls the diarrhoea. I have to use it every day and it pretty much does the trick. Without it I'd be stuffed though!! The diarrhoea is relentless and gets painful because of the acid so the Questran every day is essential.

      I know how reluctant you are about this surgery and if it is possible to avoid it you'd be happier. Could your son move onto a liquid diet for a couple of months to give his bowel a rest while he reduces from the steroids??? It's a tough call, but may make a difference.

      If the surgery is unavoidable try not to worry too much about the bile salt thing as it is manageable. Much more so than a horrible stricture.

      Sounds like you've got a small reprieve before any surgery happens so I really hope things become more comfortable for you both.

      Hannah

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    • Posted

      As hannah also said, i do have the bile issue.

      Its not as bad as it was. Some days are better.

      Its 13 weeks tomorrow since my surgery and its a lot less than it was, and ive learned to control it better. Ive been given questran too like hannah.ive not used it yet as i want to see the surgeon first which is monday.

      Im glad hes out of pain for now.

      Some peoples bodies cope better and apparently the bowel can adapt.

      Its not that awful and is a lot better than obstructions strictures and infections.

      Id use some barrier cream straight after surgery as the poop can be acidic.

      Honestly tho, you 'get on with it'.

      Are they letting him home for the next few weeks?

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    • Posted

      I avoided the Questran at first too as I was reluctant to accept that I would have to use it everyday. But in the end it was really the only thing that made a significant difference. And it was only after the second surgery on the terminal Ileum when I was left with none that I really needed to use it. Now it is just part of my morning routine.

      Probably worth a mention too, B12 is dealt with in this part of the intestine. Really important that this level is maintained so make sure they're/you're on top of that. I have a simple injection at my GPs every 3 months.

      Good luck with your post op appointment

      Hannah x

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    • Posted

      They have just had a discussion this morning in the hospital with the Gastro team and the surgeons. They are going to wean him off the prenisole has he's now down to 20 mg daily and think are going to try him on a humira or remicade I think it's called that ? they say they will keep him in for the next few days to moniter him And have said he will have now a planned surgery for 4-6 weeks hoping the bowel will be a bit more better then for when they go in

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    • Posted

      Thank you for your reply it's very nice to hear from someone that's been through the same op so I can give the info to my son and understand it x

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