Is it time for an ileostomy?

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Hi,

Basically I have not been diagnosed with Crohn's but suffer with simlar symptons, unfortunatly as I do not have Crohn's I cannot gain access to drugs used for Crohn's.  So why am I writing on this forum? 1). There is no FAP forum and 2). I am looking for advice from Crohn's users who have gone with an ileostomy which is what I am looking at doing

I was diagnosed with FAP as a child and had an IRA (Large bowel removed but Rectum remained) in 1996 with a temp Ileostomy for 6 months. I then had the best 22 years of my life, near perfect control of my bowels without loperamide, certified scuba diver, traveled the world and got married.

October 2015: I had a relatively new procedure called a mucosectomy of my rectum, this removed the mocosa layer from the rectum which stops polyp growth. I needed this done as I had thousands of polyps by now and the chances of Cancer in one of them was too great a risk.

Unfortunately the healing process as taken 9 months so far much to the surprise of my Surgeon, my symptoms are frequent loo visits excess 15 times a day, feeling empty and then full within minutes, soreness around the back passage, possible acidic stool, depression etc

I use Metanium cream to help with soreness as a barrier cream, take 4mg Loperamide 30mins before a meal.

June/July 2016: I had 2 Pancreatitis attacks as a result of gallstones, July 1st I had my gallbladder out.

I am starting to really think that my quality of life is a dismal and really wondering of getting the ileostomy.

I think my problem is I see the ileostomy as a method of gaining/returning my lifestlye, being able to socialise and getting back to work etc.

Does having the ileostomy make medical sense? I'm not sure and possibly not to doctors, my current symptoms are below.

15+ visits to the bathroom (Used to be 4-6)

Sore bottom (Creams do not help the pain sad wink

Unable to eat properly (IE start eating but then go to bathroom, try again but need the bathroom so I stop eating)

No social life ( I can manage the cinema on a good day, but even then today for example I used the loo twice during the film)

No work (10 months off work so far, 2 months left on half pay)

Depression (Never had it until after the surgery)

Feeling empty on the loo but then feel full minutes later. (Never had it until after the surgery, I always had confidence on the loo and knew when I was done and that I wouldn't need another visit for 3-4 hours)

I am basically scared with the permanent decision of am I making the right choice? Will the ileostomy solve my symptoms? What will my recovery be like, how long will it be, will it be painful and how long for? How my times will I need the empty the bag, can the surgeon refuse the operation?

Can anybody offer advice/guidance?

Much appreciated

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9 Replies

  • Posted

    Hello!

    Have you ever tried Cholestagel (Colesevelam)? It's prescribed to people who have high cholesterol but is also sometimes used for Crohns patients and other people who have bad diarrhoea due to malabsorption. I have a prescription for it as I have experienced problems with very acidic bowel movements (like battery acid) since my Ileostomy reversal back in March. May be worth asking your Doctor if you can try it before considering surgery. A lot of people claim to have good results from using it. I believe it also comes in sachet form - which is cheaper.

    As for the sore backside? The ointment you use contains Tincture of Benzoin which I found stings like f**k on raw skin. I use Sudocrem but you may benefit from trying something with an even higher zinc content as it's very soothing on sore skin. 

    I must say I am shocked that you think it's unfortunate not to have been diagnosed with Crohns Disease!  It's certainly not someththing you should wish for..

    I also can't understand why you think drugs used to treat Crohns would help when you say you have don't have the disease.

    In the 28 years that I have had Crohns I have tried a whole host of medications and the side effects of quite a few of them are not pleasant. For example - one gave me Anaphlyatic Shock, another made my hair fall out and my nails peel..

    I am not going to tell you whether or not to have a permanent Ileostomy but,  as you say that you previously had a temporary one yourself, I'm sure you know what to expect should you chose to go down that route.

    Take a look at Inspire com and search for ostomies. You'll get an idea of the sort lifestyle that ostomates experience (and various issues that can crop up with both ileostomies and colostomies) from the folk there.

    Hope this helps.

     

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    • Posted

      Ah maybe how I worded the post was misunderstood, I certainly wouldn't want to have any condition. At present I seem to have a new condition along with my fap that doctors cannot find solution for, but state the symptoms are similar to Crohn's.

      I have tried those drugs but seem to have no effect, in regards to cream I find sudacrem was ok but due to the frequency the sore spots or tears etc cannot heal.

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  • Posted

    Hiya. I am so sorry this has taken over your life. As a sufferer of colitis, ibs-d, fructose malabsorption, & bile acid malabsorption, I empathise with how drastically this restricts everyday life.

    Firstly, why haven't the docs got to the bottom of an accurate diagnosis - have biopsies been done of your colon, & small bowel investigation been done like contrast mri, capsule camera pill endoscopy- these tests can accurately diagnose colitis or crohns in particular. Also have you ever had a sehcat scan to test for bile acid malabsorption (bam for short)? if you look up that condition you will find it often mimics the same symptoms as colitis & other inflammatory bowel conditions but is often overlooked. like bong says, i take cholestyramine sachets twice daily for my bile acid malaborption which controls it very well. the symptoms of bam produce urgent frequent diarrea & sore rectum to the point of being raw. its a simple test involving 2 scans 1wk apart, & if positive - the treatment would make such a big difference to your symptoms. hope this info helps a bit.

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    • Posted

      No none of those tests have been performed, a dieticianist had confirmed that my symptoms are not caused by my diet.

      Problem is my surgeon has a massive wait time for consultations.

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    • Posted

      I think your doctor may be able to refer you for a sehcat scan at your local hospital. mine was referred by my gastroenterologist. remember its possible to have more than 1 condition contributing to all your symptoms (as was found with me) so it's definately worth getting the test being that the treatment would make such a difference to you if found positive. are you also under a gastroenterologist as well as a surgeon (thinking of a colonoscopy & camera pill endoscopy on small bowel). I really can't believe in view of your chronic symptoms, they haven't done these common investigations for you bowel conditions.

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    • Posted

      Yes I am under a ColoSurgeon, Gastroenterologist and a Dietistionist.  None have suggested those tests at all.
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    • Posted

      personally from my own experience with problems & subsequent diagnosis's i would contact your gastroenterologist asap, & ask them in the first instance to do : 1) a sehcat scan to test for bile acid malabsorption & 2) a colonoscopy (still can't believe they have done this given your chronic symptoms....). The reasons being ongoing chronic symptoms , not a had a definitive diagnosis for ongoing symptoms, colonoscopy can eliminate or diagose several conditions, sehcat test because of symptoms . be firm & don't be walked over by flippancy of any medical professionals.

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    • Posted

      I have no colon so a flexiSigmoidoscopy was done in July to examine the rectum.  Everything appeared normal.

      GastroEnt performed some recent bloodtests incl BAM abd Vit B12 Deficiancy which came back normal.

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    • Posted

      what is BAM ? Not the bam (bile acid malabsorption i was on about was it? that is only diagnosed with a sehcat scan not bloods).
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