Ulcerative colitis (proctitius)

It's getting to the point now where I'd rather them just admit me and get it sorted. But they just brush it under the carpet. I've noticed on the pred it stops me going to the toilet but in some cases that's worse because it makes the stomach cramps even worse!

Hope you get sorted soon mate. Im just losing the will to live I've currently been of work 4 weeks nearly and got no better since the 1st day I got signed off.

Dan

Asacol don't seem to be working for me I've been taking them months now and no change so my IBD nurse has put me on 1g pentasa now suppositories and 5mg of prednisolne suppositories. My mouth is absolutely a pain so hard to eat and drink with it. I've noticed I get alot off acid too like heart burn which isn't pleasent rennies have become my best friend also.

Yeah the pain isn't nice the worst is in the morning sometimes wakes me up around 4am and cramping is unreal but as stated before feels like travels round my lower back too. With this happenin it's virtually impossible to sleep on my side because it just hurts far too much so have to sleep on my back which I struggle too do. And I hate taking the codine as I feel it bungs me up along with the pred. Then makes the stomach cramping worse.

I need to take in a stool sample to the Dr's to see how inflamed my bowel is instead of having the camera because it hurts far to much. But thing is I'm not having any bowel movements because of the meds and it's painful.

It's such an awful disease to have I had it for 11 years and had a flare for 9months and pregnant at the time too! afraid the enemas prednislone and immune suppressants didn't work for me was on them for 6 months, after exhausting ever option diet /meds you name it I tried I ended up having an illestomy in September life is 100 times better and I have energy now which we all know with this disease you are so weak.. I have no regrets finally got my life back I would suggest have the camera done and ask for some sedation that way they can know how bad it is don't put it off its best to find out sooner good luck. 👍😉

Sounds like you're in a lot of discomfort. Can you ask your gp for something for your constipation and that wd help with some of your pain? I've taken Lactulose & gp also prescribed Movicol. Yr gp can also check out yr back pain so hopefully you can get some sleep. Pain around your shoulders is often associated with trapped wind. Don't think people can understand how painful the cramps are if they've never been constipated & not a subject we tend to talk about!

I agree with Rachelle a flex sigmoidoscopy or colonoscopy is the only way the Drs can accurately see where your colon is affected. I understand your worry as you are sore but if you have sedation it shd be painless. My last colonoscopy showed my UC (proctitis) has spread slightly & Gastro dr given me different medication to target that area.

I'm due to take a sample in too. If you tell yr gp you're unable to provide a sample because you're constipated they'll prescribe something. Hope you're sorted soon and feeling bit better.

My flare up had calmed down but I feel so heavy and out of breath all the time doing stairs and chores, I live on my own with my 2 small children and being in hospital 9days was hardly ideal as only had my mum to help so I was wondering can you op for the operation or do you have to try every medication first? And did you have key hole surgery they said it was an option ? And how long did you have to stay in hospital? If surgery meant no pain strength back and no more flare ups and back to my old self so I can actually get on with being a mum I would want to just get the infected colon out cause it's only me here to do everything and it's draining me not being fully capable of looking after my own having others do school runs etc. I've never been slow paced always rushing around sticking to routines and schedules yesterday just doing a few errands I felt like an out of breath granny I felt hot heavy breathing my lower back felt like it was gonna snap in half I felt dizzy it's ridiculous maybe side effect for Steriods? If you could pass on as much details about your surgery I would much appreciate it

The surgery which took 5 hours wasn't easy and I stayed in hospital an additional 5 days before going home. The first week was very difficult as I recovered from the effects of the anaesthetic and got used to my Stoma. The Stoma Nurses have been brilliant. The one frustration is that although my energy levels are getting back to normal (we walked an hour and a half) with the dog today you are u able to lift anything heavy for 3 months. Yes the surgery was Keyhole. Surgery is a serious step and a discussion with a surgeon and a Stoma Nurse will give you the information you need. I was lucky to have the support of my wife and retired early because of UC so work wasn't an issue, nor do we have young children. Clearly you are facing a massive challenge whether the medication works or surgery becomes an option. Keep the pressure on the Consultant, a flexi sig is always worth doing as is a colonoscopy because, in my experience, they are the only true way the extent of your UC can be diagnosed. Good luck with your treatment. My best wishes Chris 

Think I have wrote to you before I had UC for 11 years had a flare when I was 7 months pregnant which continued after my baby was born this March and I had surgery in September illestomy life is 100 times better have my energy back and my life 🙏😉it's different with a stoma but a lot easier than coping on a daily basis with UC.. I have no regrets steroids for me were the worst they gave me all the awful symptoms along with losing my hair and I tried all the medications,diet u name it I did it !! still everyone is different and if diet can save your colon try ...but for me I exhausted every option till surgery it was what was meant to be for me I had open surgery at the uclh hospital in London yes I have a scar but it's given me my life back the thought process is a lot scarier than the reality of it and like darasdad1 said the stoma nurses are fantastic and will guide you through it someone who has a stoma for over 20 years now said don't be scared of this its your friend and you will be ok p.s I called mine tinker 👍☺️ Xx any questions just ask X

Looks like we are near enough in the same moment of our lives right now I think as each day goes by I feel better stronger and amazing not to be on all those drugs !! It was liberating to give them all back to the chemist that felt good! 👏🙏😉 and like you said with a stoma its not such a big deal at first it's like anything getting used to change and as time goes on it will get easier as they say practise makes perfect ! I am 11 weeks post op now and enjoying taking my baby out feels like the days of being near toilet are finally over! Are you going to have the j pouch op if you don't mind me asking I am due mine March April time still lots to think about..

Let me update you. He has never looked back and is getting on with life as if this horrid UC had never happened, apart from the scar!

He had the "man chat" and the statistics for complications are tiny, no problems occurred! thank goodness. He has been completely healthy, no side effects and no accidents!  He goes to the gym & swims 3x a week and loves the freedom and normality. He has put on his lost muscle and is fit again. He went away to Turkey in the summer & swam all the time, slightly self conscious at first because of scar, 2nd scar       ( where stoma was) is nothing, almost gone.

I did all the research while he got on with his life and can safely say all was worth it. To be pain & drug free and back to sitting on the loo is fantastic. Stump had to be removed any way so surgery had to be done, so worth it!

I can only recommend the hosp and surgery where he had his j pouch, as we don't have experience of anywhere else. They are the specialists and people go there from all over the World.They were perfect & if further surgery was needed in the future for any reason then we would have no worries about going to John Radcliffe Hosp Oxford  again.

Wish we knew then what we know now as I wouldn't have worried. Having an internal pouch made & connected is not that long a process & as long as you have done your research & are confident in the hospital then hopefully it will end with a good result.

Good luck to all.

Sheila.

Great news to hear your son is so much better now and to have people like you on here is a big support well it is for me :-) I am coping well so far with the bag and next op is the j pouch did your son ever suffer with pouch titis sorry for the misspelling ? I am worried about the next op but suppose that's normal hey xx

Rob has had no complications of any sort. He eats anything & everything in large quantities as he is so sporty. He felt a bit unusual externally when he had a cold recently but he was prob a bit dehydrated so just got on with things and drank squash by the pint, he should be sponsered by Robinsons!

JR Oxford said they almost get no pouchitis at all!

My son had such a different experience with the pouch surgery from the ileostomy and was so well leading upto it that it really was easy. Remember you are electing to have surgery, you have the choice and you are healthy and disease and drug free and the recovery is quite quick. Also the outcome is positive and easier than present ! He did have his own room and Wimbledon to watch, so it was a bit like a holiday! He also had his lovely girlfriend (and Mum) to bring him nibbles and treats daily.

My son uses the toilet 3 or 4 times a day and prob eats double your intake because of his sport. He has loads of control so can delay for at least an hour. Nothing is certain but we are amazed at how the muscles are able to control the output, much better than expected.

Have you decided where you are going? There are choices of types of pouch but my son was told that the standard J pouch would be most suitable. Mr Mortenson was his surgeon and is so experienced.

Don't worry, you have been through the difficult part, the rest will be fine. We are so lucky to have this technology and expertise available now.

Best to all, sheila

As for advice I have mainly positive things to say. However, don't look too much on line as they are mainly the negative feedbacks. Also choose a surgeon who does the j pouch surgery often for obvious reasons as also the team and support staff are so important.

As long as you are well and recovered you should be fine. It is so much easier than the colon removal and much less of a shock to the body. Have you a mucous fistula? I'm not sure if every surgeon does this with the ileostomy or is it a variable. My son had this and so the first j pouch surgery was in the lowest part of his open surgical wound and the MF was closed up when the stump was removed. The pouch was stapled up from the last loop of the small intestine. This took about 5 to 6 hours. He was up and walking the same day and drove home on day 6.

After 6 weeks or so when the tests were done to check for a healed water tight pouch he had key hole surgery through the stoma site to attach to the pouch and close the stoma scar. He was given advice on muscle control exercises to practise at his first consultation.

His frequency of going to the loo reduced quite quickly over time as the pouch stretched in size as adviced. He had some follow up appointments but all was so good they said no need for anything apart from annual check up. All disease removed, yippee.

The ileostomy was a scary and last resort operation as far as the medics were concerned but we now think of it as the beginning of the end of the UC and the start of a return to normality.

Try not to be anxious, you have done the hard bit!

My son is looking forward to a  good 50 years with his pouch, here's

hoping.

Sheila.

Thank you for your reply and the information homework is a must with this ..and explaining everything to me it's really reassuring and great to hear your son is doing well, 2 of my friends have had the same surgery and where we are based nearer London I opted for the same surgeon at the uclh hospital.

Only thing that will delay me for the next op is trying for another baby before j pouch as for women it lowers fertility by 30% so we will have to wait and see fingers crossed 🙏

Xx

So glad to hear you are doing well 😉 I see my surgeon back in December which he's given me the good to go..it was weird and emotional to go back to the hospital but in a liberating way !! However for wanting another baby he's advised best to hold off for me if and when so fingers crossed.

I hope your consultation goes well all the best👍 Rachelle

My son was in hospital with a severe flare of UC and perforated in 2 places in his colon so emergency op to remove colon. This meant a long open surgery and big scar. They had discussed keyhole surgery and was planned if necessary, but we didn't get there, the Infliximab didn't work quickly enough.

He was glad that the lower part of the scar was used for pouch surgery and sewn up together with the fistula so much neater. We were determined to go elsewhere for the  pouch as the staff during the night ignored Rob's shouts of pain where he "knew" he had perforated and just gave him painkillers. Complaints to Ombudsman resulted in Apology from local gen hospital, result!

One of the reasons we are so very positive about his health and successful j pouch is that he is alive and well, against the odds really. He was 27 and so now 29 and as an athlete and coach he was as fit as he could be. As he had only just become part of the UC club he was still physically ok. That's why we didn't lose him as when they finally got him into surgery he was a bit of a mess internally. Thankfully the surgeon and critical care did their bit too.

Sheila.

It must of been such an awful time still glad to hear he's at the end of that dark tunnel and living his life like he should be.. I will keep you posted on my progress take care X

When you see your Consultant ask him about removing the rectal stump, after all closing up the mucous fistula is important to. Such a journey!

 Good luck with the next part of yours.

P.s don't forget to check out the DVT avoidance too, remember UC sufferers upto 3x more likely to get a DVT after surgery etc.

Sheila

Thank you so much for all the information and your support means a lot to me I will definitely ask the questions and fingers crossed for the next stage X