Progress update : 10 weeks on from Illeostomy.

Digestive health
1

Hi all,

Thought I'd post a follow up, as it's now been 10 weeks since I had my bowels removed, and went "on the bags".

Just a few thoughts, comments, and stuff I've learned,

It's great at first on the Tramadol painkillers,it's easy to do too much, but when I came off them it hurts quite a bit. 

Cutting the holes in the bags can be tricky, I thought I had it sorted, but still keep getting leakage at the back due to the holes being too big. Then another day the hole is too small, don't do what I did and get a weeks bags ready in one go! Measure them up each time, or make a few up in two sizes.

Changing the bag every other day is not for me,  I'm now doing it every day, two days is too long to have a bag on.

It blows up like a baloon at night, watch out for that!

Stay hydrated, if the produce is too dry it will clog up around the top of the bag, and can leak round the stoma.

Be aware when draining the bag that it's basically stomach acid, if you get it on your hands it burns, and will infect any small cuts on your fingers. Wash it off straight away.

Overall it's still OK, and I know I've still got lots to learn.

Hope some of this is helpful.

Chris Warr.

 

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Hiya I hope you don't mind me asking but did you have to have such major surgery because of being really ill with colitis I've had colitis for five years and I'm currently really unwell with it again and am thinking about having major surgery myself as I don't want to spend the rest of my years poorly as life is for living and I don't feel like I'm enjoying it at the moment life that is,are you feeling better for having surgery? I'm really interested on people's views on it many thanks

3

Hi Helen,

I'd been ill with UC  for 12+ years, I finally had to have surgury when I was hospitalised in January. I put it off as long as I could, but was told that there was no altenative this time.

I can't say if life's better really until I'm fully recovered, and back to work, I do feel better from being off all the tablets though.

Personally I put the op off until it was nearly too late, I would urge anybody to listen to the Doctors, and if they suggest you do need surgury, as they did to me in 2012, then it's probably best to have it done.

 

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Hi Chris....good to hear from u. Thought u had deserted us lol . Great u r making progress even if u r still having teething problems. Am sure it takes a while getting hang of it. I have got date for my surgery ..May 1st...I got in contact with a lady from ileostomy association...they r very helpful. She was brill ....she had hers for 44 years and was in great health and still working full time. People from association are great for tips....u can obviously Google it online and make contact with person in ur area if it's any use to urself. I Hav everyone tortured for hints and tips...hopefully I'm well prepared...I no it will not all b plain sailing but I'm that scundered with the cramping and my bloods are very low...no energy whatsoever ...am having to hav couple of iv iron infusions few weeks b4 surgery. Sorry this has ended up an essay lol. Glad u r coming along so well and take good care of urself MJ

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Hi Helen .. If u read my reply to chris u will c I'm having surgery soon. I hav been speaking to lot people and reading lot stuff on forums and majority of people will say it is best thing they hav ever done. I no of nurse who had to giv up her job cos uc and eventually had to giv in and hav the surgery at a later date. She said she was so sorry she had not done it earlier as it had dramatically changed her life and if she had she would not hav had to giv up her nursing job. I and am sure urself hav lost so much good health and a lot of time in our lives to this illness...why waste any more time when u c and hear how well people are after. Good luck with ur decision..The ileostomy association are very helpful if u make contact with them . MJ

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Good luck for May 1st MJ xxxxxx

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Hope it goes OK Mary, be thinking of you.

Don't worry, it'll be over before you know it!

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Hi Jill... I actually meant to mail u last nite and it went out of my head. Yeah eventually got my date...have to have couple iron infusions b4 it as my iron is extremely low and I feel absolutely rubbish . I get that tired at mo I forget half the time what I've done or who ive told what to. I can manage about half an hours work in day .Anyway thank u for the good wishes and shall keep u posted xx MJ

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thank u Chris ....I'll b anxious but glad to get it behind me and hopefully a new chapter in my life...a much healthier one . MJ

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Hi Jill.....forgot to ask how u r..was trying to send private msg but cannot work out how u do it even after reading it up lol x MJ

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No worries MJ ! Just doubled up my Asacol to 8 daily and added nightly enema as started some blood on tissue and increase of BM. Since then stomach pains decreased dramatically thank goodness. Beginning to think I was flaring hence pain? As this first flare really since diagnosis I'm wondering if I was never truly in remission at all hence so many cramps(almost daily)? Sure takes some sussing out doesn't it? Because I never got diarrhoea I suppose I will have to go on blood/cramps as my flare signal? Will carry on the double up until my GI appt mid April and see how I go! Appreciate your thoughts mate xx

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Doesn't it just take some working out and when u think u have it throws something more at u. Blood is definetly sign of flare . Mine has been bothersome since colonoscopy and I was taking Asacol 8 daily and suppositories but getting no relief. I then cut totally back on asacol and symptoms have improved ??? Don't no mayb I'm sensitive to all that asacol ....its a mystery...anyway has been improvement...still taking psyllium....think in several weeks I will hav no bother with the meds !! Do u reckon since u come home it has got bit worse...I reckon when u r in totally chill out place and no stress or day to day at home stuff symptoms r not as bad. When we wer away last week for those few weeks my uc was DEFINETLY not as bad. Imagine that is nearly year ago 😧 doesn't time fly. Little did I no what life would b throwing me this year ! It will b quite a lazy summer since my activities will b limited . Let my lot look after me lol .Hope urs settles down...do u do yoga ...think we had this conversation but can't remember ur answer. Xx MJ

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that should read away last year lol MJ

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Had pains on hol but no blood! Think you're right,stress sure don't help! At least I will know my personal flare signs in future! Pain definitely much better with increase although I hate taking loads of tabs...but needs must..will see how I go. Yes defo let others wait on you for a change, you don't want to undo the good work of op! Hope iron kicks in and you start to feel the benefit,chill out and keep in touch xxxx thanks for your thoughts xxx

15

Hi Chris,

I'm sending you  a message because like you I spent ages finding out info to help make life easier but sometimes failing, I think these forums are v useful. I dont have IBD but my son has and has been thro surprise diagnosis, severe IBD, 3 stone weight loss and emergency illeostomy. He unfortunately developed an extensive DVT and was rehospitalised and went on to get post thrombotic syndrome. He is one year on and fit and strong again and has gone for reversal by j pouch. He is due to complete in May and so no more bags.

He was only 27 when he had the illeostomy and is an athlete so it was difficult to come to terms with as he was so active and never ill until then. I do the research as he is busy living his life!

I have replied to several others on the forums such as IBD, colitis,DVT and post thrombotic syndrome. Please look there as I have given info that I have found through searching the internet and getting GP referrals for my son.

Do beware of DVT as IBD sufferers are prone to getting it as the blood clotting factors are part of the disease. Get a referral via GP to the best hosp for IBD, so St Marks London or John Radcliffe Oxford.

A good stoma nurse is important and by now your stoma should have settled down in size and shape so get measured and order ready cut bags with air valves to sort out ballooning.

My son had a mucous fistula and used asacol pessaries to dry up the out put from his bottom. He had the last bit of his colon removed as part of his reversal surgery so is now disease free and they closed up the fistula, which he was so glad about as it got in the way of his stoma bag and also had to be dressed. It was also very active and sometimes leaked which made his stoma bag come loose.

I was amazed how much variety in knowledge and ideas about treatments there is especially amongst the medical people so do ask for a second opinion.

We have shed many tears over this in the last year as it is such a scary disease and long term and can completely change your life but there is progress being made all the time esp in drug treatment so keep informed. Good luck.

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Thanks Sheila, I'll have a read of your other posts. It sounds like your son had a really tough time, good for him for coping, it's not easy.

My stoma still varies in size all the time, so I'm now cutting the bags each day to suit.

Cheers

Chris Warr

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Hi Chris...usually say stoma has settled size wise by this time. Do u have a gadget that measures it MJ