Please help me (ileostomy surgery reversal/permanent)

Hello guys, I'm in a bit of a mess and really need some advice. I don't think my doctors are giving me the full range of support I need and could have.

A quick background history, I was diagnosed with Ulcerative colitis at the age of 17 in 2012 which was well controlled using mesalazine, until 2014 in which i was admitted to hospital approximately 3 times in the year due to flare ups. These were easily treated with hydrocortisone IV followed by a few weeks worth of decreasing dosage steroids. I was admitted in hospital once again in early 2015 with the same outcome. On 1st April 2015 I had another flare up which wouldn't respond to IV or oral steroids, aswell as predsol enemas. At this point my consultant and surgeon made me 100% sure that an ileostomy was the only option I had left and I took it. Later on I heard of a treatment called Humira, which is an injection you take which can control UC - i wasn't informed of this.

The first ileostomy took place on the 8th of April and it failed. My stoma had turned purple and was just spitting out blood and everything i ate was vomitted back out. My surgeon visited me a week later on the 15th to insert a catheter into my stoma hoping it would allow something to pass through it. Nothing improved on that weekend and I was forced to undergo another surgery, refashoning my stoma on the 20th April. After staying in hospital for such a long time and going through so much pain and discomfort I was discharged on the 30th of April. This month consisted of me eating very little and i left hospital weighing approximatly 43kg at 5ft 11''.

Now, when I had my ileostomy, I was never given a follow up appointment with my surgeon, everytime i rang up i was told they're all far too busy. Which couldn't be the case, I know other stoma patients who had their surgery after mine and had already seen their surgeons. I started experiencing bleeding from my rectal stump, at first it was extremly pink/light coloured and i'd see it every few days, when i told my stoma nurse, she said it's nothing to worry about.

As time went on, it got worse, bled more often and the colour was a lot more like fresh blood. Around September 2015 I then had to get in contact with my old UC consultant to sort out an appointment, because something was obviously wrong. I also consulted my GP who gave me predsol enemas to take for my rectal stump - they helped a bit, i could only use a quater of the bottle and had to let it out after about an hour. I had another endoscopy which was extremely painful and was diagnosed with UC in my rectal stump. I was given mesalazine suppositories to take once at night.

I did this for a while, the bleeding reduced dramatically and when it would bleed it was black blood. Then it's effects wore off, i was bleeding more than ever and in intense pain. I retried predsol enemas which i just couldn't retain, so i was given prednisolone suppositories, these eased the pain, but the bleeding continued. In december 2015 i had a UC consultant meeting and the doctor prescribed me a type of Arsenic suppository which i wasn't able to get hold of due to a manufacturing issue with this medication. I went back to him and he said he would consult with his team and get back to me.

That night i experienced so much bleeding and pain I had to ring in the next day and speak to an IBD nurse, who spoke to my consultant and they advised i come into hospital to be treated with IV steroids. This was on the 18th December 2015. I've been here over a week now, the IV's didn't respond well enough and they've put my on a decreasing dose of oral prednisolone 20mg. I'm also taking codine (4x day), paracetamol (4x day), nefopam (3x day),Amitriptyline once at night, mesalazine suppository in the night and prednisolone suppository in the morning.

They have pretty much told me what they're trying to do is decrease the steroids in my body to reduce the risk in surgery. This is why i'm on so many painkillers, they are not treating the bleeding anymore. They want to remove my rectal stump now. I always wanted a reversal.

I'm due for a visit by a surgeon tommorow, they tell me. I'm here to ask for help, is there anything they've missed? I feel like they want to just get rid of me asap. Why did they not try humira? Please.

Post Edited (Dr Batman PhD) : 12/28/2015 2:53:57 PM (GMT-7)

I'm sorry sounds like you've been through quite a lot.

I have a few questions/clarifications:

• Are you getting a takedown to have a ileal rectal anastomosis (ileum attached to remaining rectum)?
  
• Are you a candidate for a j-pouch?
  
• Are they making your stoma permanent and just removing the rectum?
  

Uniform Charlie said...
You would be much better off posting this in the ostomy forum. Sorry for your troubles.

Sorry, I am new to this forum. Thanks I will do.

Ok you are very correct in your assertion that your case has been mismanaged.

They did not offer the full range of care.
Leaving part of the colon, in your case the rectum, was not necessarily wise as you will still have ulceration there.
Did they test you for Crohn's disease?

You can still try humira or remicade to treat the rectal stump.
They are medications they bind to the tnf which brings in inflammation so essentially they block the inflammation.

There are some severe and very very rare side effects associated with these medications. However, the benefits greatly outweigh the risks.
I am not sure how it works in your health system but I would request a new colorectal surgeon for a second opinion as well as a gastroenterologist.

Is your surgeon a general surgeon or a colorectal? You definitely want to see someone who is experienced with this procedure. Even if your original surgery was considered an emergency and you ended up with a general surgeon, I would consult colorectal surgeons with experience in IBD treatment before moving forward. The best surgeons are the ones with the most experience. Ask how many procedures he's done for IBD.

If you have a rectal stump, reconnection might be possible. With UC, you can only do this by having 2 more surgeries. The first step would be to get rid of the rectum and have the jpouch created. After that, you can have the second procedure to reconnect the jpouch to the small bowel. This is considered a small bowel resection.

With UC, the rectum is effected, that's why you have symptoms. You have proctitis in your remaining rectum. Many UCers suffer from this after the first step of a 3 step procedure. if you want to keep your ileo, that is possible too, but in most cases, teh rectum will cause enough discomfort that you would want to remove it. If you go that route, reconnecting will never be possible again.

I agree, the first thing you need to make sure you don't have Crohn's. They should be able to tell you pretty conclusively from the biospsies taken on your colon that was removed during the first step of surgery.

What country or state are you in? We may be able to help you find a good surgeon/GI. I had jpouch surgery over the past 6 months and I am doing pretty great. I prefer this to taking a bunch of meds. I tried a few of the biologics without luck. You should have been offered to try them if they are available where you live, we have many members who have been doing quite well on biologics for many years. We also have quite a few who didn't respond, they are not a magic bullet for all UCers.

I agree with NCOT on the ostomy board. Get a referral to a facility that specializes in colorectal procedures. When you see the surgeon, see if you can get access to the pathology reports. They should be able to provide you with more information than you're getting. It's crazy that you've been left in the dark.

notsosicklygirl said...
I agree with NCOT on the ostomy board. Get a referral to a facility that specializes in colorectal procedures. When you see the surgeon, see if you can get access to the pathology reports. They should be able to provide you with more information than you're getting. It's crazy that you've been left in the dark.

The first thing i will do tomorrow morning is contact my GP and ask for a referral to the 2 hospitals he has suggested. I really hope there is still a chance with a reversal. I'm also in my final year of university, and this has affected my degree to such a huge extent. I really need my life back.

notsosicklygirl said...
Please also look at dikid's response. With Crohn's, it is best to preserve as much as possible. In that case, connecting to the rectum might be an option, but you would have to take medication to control the Crohn's. I am expecting that you are dealing with UC... Let us know what you find out.

I will update asap after contacting my GP tomorrow. I am also seeing the surgeon here tomorrow, so I will let you know what she says. The surgeon is going to be different to the one who did my first ileostomy and refashioned it. Not sure how long referrals take, but hopefully I can be in contact with someone from a different hospital tomorrow, if not then I will personally try to call the hospitals outpatient department and explain my situation to them.

I spoke to my gastro on the ward round. He says my surgeon was a proper colorectal surgeon and he wants to perform a CT or MRI scan on me to see what is actually going on. He said the endoscopy didn't show much inflammation and i'm a bit of a mystery.

He said he will contact my old surgeon and get him to speak to me. I tried to ask him about different procedures he could do but he kept saying it's best to ask the surgeons.

My GP pretty much told me I need to discuss with these consultants and ask them for a second opinion. I asked him if he could refer me to saint marks, but i don't have any details of anyone there so he cannot. Can someone please help?

Dr Batman PhD said...
My GP pretty much told me I need to discuss with these consultants and ask them for a second opinion. I asked him if he could refer me to saint marks, but i don't have any details of anyone there so he cannot. Can someone please help?

Here's a link to St Marks (UK) list of surgeons, gastroenterologists, etc. www.stmarkshospital.nhs.uk/consultants/

One's never, truly sure they don't have crohn's disease (even when the surgeon examines your removed large intestine). Your disease is characteristic of uc now, but in a very small minority that diagnosis can later change. It's usually recommended to have additional tests, to be doubly sure (a scan of your small intestine) it's not Crohn's. Getting a jpouch is a leap of faith there (not a solution if you're later diagnosed with crohns, your new pouch will have inflammation and you'll go through the whole meds game again. Not to scare you, but to say there's small odds (probably like 5 percent odds or less), but a risk to be aware of.

Here's some more good information, quoted from another surgery thread a short while ago:

atwoodt said...
Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - www.ncbi.nlm.nih.gov/pubmed/14501509,
www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/,
www.ncbi.nlm.nih.gov/pmc/articles/PMC2709047/.
There are also some good blogs out there that really can help you get a handle on what the process is like - ronnielee-fightingforit.blogspot.com/, and itslikethisuc.blogspot.com/ and my blog fyouuc.blogspot.com

Saw my gastro today, his plan is to keep me on the suppositories and pain killers and remove the steroids ready for the surgeon. He believes this is the best way to go about it. After telling him the suppositories do crap all, he says this is the best treatment for me. The MRI scan showed no sign of fistulas or abscess, so the only thing causing the pain must be this "mild" inflammation. So why the hell are the suppositories not helping it at all?

He says I need to persevere with it. He's increased my dosage of morphine I can take upto 15mg every 4 hours. Along with this he's saying the amitriptyline should start to work and help. Spoke to my GP again and he's adamant that the hospital doctors are the people to go to for a referral. I now need to ask again if I can meet one...

Post Edited (Dr Batman PhD) : 12/30/2015 5:21:50 AM (GMT-7)