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Help,

I am at the end of my tether. I suffer from IBS, constipation dominated, or refractory constipation or colonic inertia for the last 20 years, doctors describe it differently. Laxatives no longer work, I am taking Picolax daily and coffee enemas, but still suffer from terrible cramps or something that seems like paralysed bowel where my bowel becomes hard and I cannot pas wind, excrutiating, ended up in a&e twice over last couple of months. My G.P. knows my situation, my Gastroenterologist knows and my surgeon knows. My surgeon was going to operate on me 3 yiears ago but when the psychiatrist said I had body image problems he cancelled the op. I am now out of work 3 years and my boss is trying to cease my contract. I know it sounds silly but my surgeon has something against me or else because of an erroneous psychiatric report he simply will not operate. My G.P and Gastro know whats going on and my Gastro is trying to refer me to London. I dont leave the house, am unwell every day and have excruating pain, they see it when I go to see them. The surgeon just did a batch of tests. Colonoscopy, prep failed. Decography, had to insert maximum amout of lead, still no urge. Expelled most of lead but have rectoceole. Sitz-test marker, had 2 bowel motions during 5 day test, didnt feel much better after them, incomplete, still bunged up, was very unwell. However 80% of markers were left so according to him I had 'normal colonic transit' and so no surgery. It doesnt bother him that laxatives no longer work and that I am now using Picolax and coffee enemas every day. He said he would be in touch, he always says this, but still no appointment. He has tried getting rid of me, back to the doctors who referred me to him because he is a specialist in my area. He has suggested it is gynocological!. He even asks me how work is, eventhough I keep telling him I cannot work. This is the same surgeon who was going to operate before the psychiatric report. She said I had body image problems and would have a problem with a stoma bag. I didnt, the op was necessary even then. She tried every angle to keep me as a psychiatric patient. I had to see her for a year during which time my bowel just got worse. She said anxiety was affecting my bowel, I knew it wasnt, which is why I question IBS as a label for my problem. I went for an independent evaluation during which it was ascertained that anxiety was not a major issue. She wasnt happy about this. I thought this would prove it wasnt in my head, but no, she just started pulling out other theories, like because I had suffered from anorexia in my early twenties that I now have an urge to empty my bowels all the time (like fixated) because I dont like feeling full, seriously, I nearly fell off my chair. Another one was that disease wherby you 'want' surgery, you know, getting bits cut away. This woman is high up so imagine suggesting that she has another agenda. She will say anything to back-up her theory that surgery is not going to be good for me. It doesnt seem to matter how ill I am.

My gastro is referring me to London, waiting for news from a Gastro he contacted. He already referred me to another surgeon here in Ireland, but he would not take out the colon, just bypass it and give me an lleostomy. I was furious. As I explained to my G.P., I can accept a stoma bag, willingly if it makes me better but only when all options have been tried, he even agreed with me. Why shouldnt I ask to get a chance of resection like others with colonic inertia. The initial surgeon was going to try to resect. Problem is he is such a big shot here that I think other surgeons are reluctant to operate or will only do minimally invasive. What about the psychological aspect. I am 45 and in a very physical relationship, am fit (although sick) and like my body.

Mentally, this is taking its toll, I dont go out and my entire day is just about reliving pain in my bowel. Has anyone else been in my situation. If I dont get surgery soon I will be very ill before I get it, if ever. I am really beginning to worry. My partner thinks I should go public, like with the papers or take the surgeon and psychiatrist to court but I am afraid that this will hamper any chance of surgery. If I am ever better I will sue them. I have 2 young children, 9 and 11.

Ciara

Welcome Ciara. So sorry you've been through so much -- sounds awful -- but glad you found us.

I had the opposite problem, so have no experience w/those tests, but I know from reading this list that a lot of people with colon inertia/constipation problems have a lot of trouble getting taken seriously and getting the surgery they need.

It's also awful when you get a label that the doctors think you're "difficult" in some way, very hard to live down.

I'm not in Ireland or England, don't know how those systems work, but I can see why your partner is wanting to do something drastic..... you do need something to happen. Sounds like it might be good to go to London.

I hope some people who know more will be along soon ..... hang in. Thinking of you.

I am appalled at your story!!! I am so sorry for your ordeal.

My illness is different than yours but has some similarities. I had a very rare form of diverticulosis. I diagnosed at 32, had diverticula throughout and my colon had poor, nonexistent motility. I wouldn't have a bowel movement for over 2 weeks, despite all the stool meds I was taking, prescriptions and over the counter. My 1st GI was very helpful and empathetic, had him for 3 years...though left him because of his office hours. The next 2 GI's were very complacent, didn't refer me to a surgeon, got the 'we'll see' answer, maybe THEY were in denial and this was the time my infections came back with a vengeance. So, the next month, I received a referral for a cr surgeon from my kids pediatrician. During my consult with the cr surgeon, he expressed his thoughts....that this is Atypical, he can perform a resection because I was only having ascending colon diverticulitis, never took out someone's colon for diverticulosis in 25 years....he was seriously perplexed. I said - I know, I've done all the research needed. I know I'm Atypical, but I also know of what I want and what I need. That I have a severe motility problem, hence why my entire colon would have diverticula. Why would I want a resection if all of my colon is diseased? I want the disease gone, not to have a partial colectomy and it not work, knowing it wouldn't, only to go back in again. My surgeon APPRECIATED my voice, my knowledge and my tenacity. We've become best of friends. After my consult, he thoroughly looked over my CT's, consulted several radiologists on them, contacted my original GI because that GI performed my one and only colonoscopy. Afterwards, my surgeon did as much homework as he could and when I was in a better remissive state, he performed his own colonoscopy and surgery was scheduled. My only regret is not having a anorectal manometry, I don't know if I have motility issues with my rectum and currently contemplating having my ileostomy reversed. You wouldn't with having diverticulosis, but what if I have a more complex dysmotility issue? God knows I've been a medical mystery so far. Anyhow, during my colectomy, the surgeon, residents and nurses, expressed their dismay as to the actual condition of my colon. They spread it apart and held it across the surgical room and said 'oh my God, how was she living with this, this isn't a colon, it looks like something you would see in a shooting range.' I guess to make a long story short, not having a doctor take your concerns seriously is damaging. Damaging in every aspect: mentally, physically, your children, your loved ones.

Take Rosemary's advise. Push forward, please don't let this get to you. You know what you need, hope you find it soon!!!! Will be thinking of you and keep us informed!