PTSD and severe IBS, any suggested treatments?

[griselda101]

my ex (DSs dad) has severe IBS - several days / nights per week on the toilet with loose stools or constipation, explosive bowels that render him unable to work.

sometimes he will be on the loo for 12 - 24 or even 48 hours at a time without sleep. He might then get some sleep and then go back on the bog when he wakes, this often goes on for another few days of loo / sleep cycle. So he's out of action for at least half the week then might go another 4 - 5 days without passing a motion (his "normal" time). It's horrific for him and his family. This has been going on and getting worse for about 10 years.

He was diagnosed with PTSD and the consultant told him the IBS is caused by a lack of the right chemicals / signals between his brain / gut connection or something. He's had a colonoscopy that came back negative.

He also has severe OCD, anxiety, depression etc. So I think in part the OCD is responsible for the protracted time on the loo (he would deny this); however I know he has severe bowel issues so it's not solely the OCD side of things.

Has anyone had success with any treatments for PTSD and / or severe IBS.

Stress makes it much worse - after DS was born he went into the loo and didn't sleep or come out for 5 days (!) due to the stress of it (nightmare).

He's had some recent talking therapy and is trying to get EMDR on the NHS with little success so far. As cash is an issue we can't afford to go private and are reluctant to pay without knowing it might help (experiences anyone?).

If anyone can recommend any treatments or support they found useful for similar issue/s around PTSD and/or IBS it would be great to hear about them. At our wits end!!

[griselda101]

Hi Matilda, many thanks for the ESA pointers - I will pass them onto him. I think he is very nervous having read all sorts of horror stories about what can happen! We will definitely take those points on board and I will talk him through it all beforehand. Maybe we can get someone to come along and we will definitely get a doctors note.

I have looked at PIP - maybe we will speak to CAB. I'm not sure if he would be eligible but he is a nightmare when it comes to sorting out many things, probably mostly due to his mental health issues (and stubborness!). But it is worth a go.

Unfortunately he was struck off the Gastro's register recently due to non-attendance of two appointments (he claimed the letters were wrong but things like this frequently happen to him so I doubt that was the case). So we have to go through the rigmarole of getting him readmitted to the specialist's surgery / lists.

It is crazy making as he could be doing so much more to help himself yet I have driven myself mad trying to help so I almost feel like giving up ( but then he may well not bother doing anything and things will get terrible again - e.g. it took him 18+ months to sign on for benefits and he was a state in that time and so was I by proxy!!). So it's a bit of a catch 22 for me - damned if you do, damned if you don't!

We will get on the PIP case ASAP. I am going to ring CAB this week!

Thanks so much for the very helpful info Matilda. :-)

[MatildaTheCat]

Griselda, he needs to prepare for the ESA interview. They are very adept at NOT giving the points required for gaining benefits. If he is unsuccessful he would have to go onto JSA, I believe. He should take letters from doctors, lists of medication and perhaps a detailed diary from the past month or so. It can be helpful to take someone with you, too. The mental health side of it is considered in the same interview afaik.

He could also apply for PIP or DLA depending on where he lives, PIP is the new version. It is a total pain to apply for and I would definitely suggest getting professional help from either a mental health charity or CAB to ensure the application is well written and answers the questions relevantly. Again, mental health is covered within the questioning as well as physical health. There is another assessment which might take months to happen and then yet more waiting before getting a decision. However, of successful the payments are backdated to the initial phone call of enquiry. It's worth noting that after this call they send out an application form some 40 pages long and there is a fixed period of a month to return the form so he needs to be organised to get as much help with the form and as much supporting evidence to send with the form.

His diet sounds atrocious! How frustrating for you to see that when it must be a contributory factor. Would he even listen to a dietician from the gastroenterologist do you think? Probably not but there might be some adjustments he is willing to make.

[griselda101]

thanks everyone

Thanks Posh - he tells me he was tested for coeliac and other things (negative) and that he spent ages (before we met) cutting out wheat, coffee, meat, dairy, etc etc but none of it made a difference.

That said I am skeptical as to how far he took it but he insists he did. He eats a poor diet (due to poverty, laziness, exhaustion, terrible cook!) tons of cheap instant coffee, energy drinks, tinned food, bread, pies - cheap convenience foods. I remind him how bad these are but he is very stubborn and disputes their effect on his condition. Add to this he smokes regular roll ups which can't help. I make sure he eats decently when he visits.

I think there may be mileage in getting him retested though. He won't listen to me on the diet side of things. I know that stress plays a major part in how ill he is as he's on the loo tons more when he is under stress.

Matilda - he is on ESA which I understand is a halfway house between disability and out of work benefits. He has told them he wants to work for himself or in a flexible way. (I have had no end of stress trying to help him into work or getting him to train so have given up on that). I think he gets £70 per week. It's not enough to pay for additional things like treatments. He has a lot of debt so he's left with very little.

Do you think he might qualify for full disability benefits and if so would the process be difficult? He has some sort of ESA assessment (Atos?) upcoming that he's nervous about but I think he will pass (hope!!) given his condition.

He was also looking to get some sort of additional mental health benefit but he is not currently in the right part of the mental health services - we've been pushed pillar to post (in part due to his uselessness at sorting things out) but I will try to spur him on for that).

Any thoughts welcomed!

[MatildaTheCat]

Since he in effectively disabled by all this, is he getting disability benefits? This might help with paying for private treatment. Takes ages to actually get assessed but the money is backdated to the first application date.

Do hope he gets some relief soon, poor man.

[PoshPenny]

I'm possibly a bit off the wall here, but has he been tested for coeliac and all the other things before being diagnosed with IBS? Has he tried restricting his diet at all to see if anything sets this off? What he's going through sounds terrible, poor man. I think I'd have anxiety and OCD too with all that going on...

[griselda101]

many thanks dsmama - the info is much appreciated. he has tried recent talking therapy but feels he needs something a bit more direct as you put it.

i will pass the info on to him. i have enquired with our NHS authority about whether it's ever prescribed in this region and the route to achieving it. Otherwise we might just have to go private. You can get it for £40 - £50 per session in these parts so not as much as you paid although we'd be keen to get the right person so might have to pay more if necessary.

Thanks again

[dsmama]

Hi, it cost £75 per session (hideous) but for me it worked quickly, in about 6-8 sessions. This was 8 years ago. I ran into trouble again 2 years ago, around a completely different issue, and went back for another 6 or so sessions which sorted me out.
I have to say that it worked particularly quickly for me, and the person treating me thought that this was because I had had several years of psychotherapy earlier in my life, so I had already opened up those ways of thinking.
Having experienced many different approaches, I do think that EMDR is a much more challenging, direct, active and efficient way of treating all kinds of emotional problems than conventional therapy. It is tough, hard work, and asks a lot of you. And you really have to trust the person you are working with. But it really works.
I hope your ex gets the referral soon.

[griselda101]

Anything = any! sorry

[griselda101]

many thanks dsmama - so glad to hear things are better for you now.

Can I ask how many EMDR sessions it took you to feel better; also how much it cost?

we have looked into it and think it might help - we've not found anything treatment that has proven comparable results for PTSD.

[dsmama]

Hello, I was diagnosed with PTSD after a traumatic event. I tried unsuccessfully to get referred for EMDR on the NHS, and eventually went private. I would honestly say that EMDR salvaged my life. I am so thankful for it. I know it is available at certain trauma clinics eg University College Hospital. I would hope that perseverance would get him an appointment. Best of luck.

[griselda101]

bump in case anyone has any ideas!