Not sure what to do anymore - diet? more surgery? Help!

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Not sure what to do anymore - diet? more surgery? Help!

Postby NeverEnds » 19 Jul 2012, 05:01

Ok, so I've reached the point where I no longer know what to do and would really appreciate getting some views from the board.
So, had a fissure aged 16 (I'm now 34), had the no longer recommended 'anal stretch' op which did nothing for me but I was young and just lived with it. Continued to live with excruciating pain + blood with most bm's until age 33 when I saw a CRS for something unrelated (had a 'lump' scare, was basically just my imagination but hey) when the fissure symptoms were explained to CRS and he obviously wanted to try to correct.
Gave me Diltiazem (Anoheal) cream which, along with a small diet change (basically, I drank no water, so started drinking lots) seemed to work. No more bleeding, no more pain, no symptoms of any kind! When I saw the CRS next, he said 'healed'. Great I thought. The CRS said there was a chance of a superficial fistula due to the chronic nature of the fissure but I had no obvious symptoms and surgery to determine if there was one was optional.
Once I think there's a problem, I like to fix it, so agreed for the CRS to take a look. Being the NHS (in the UK) they have a find-and-treat policy, so I knew going in if they found something, they'd act. They did find a very small superficial fistula, treated it with the standard 'lay it open and let it heal by itself' method, and so began my journey.
CRS said recovery should be quick, but it was slow. The surgery was done in September 2011 (10 months ago). Initially, I had a text-book recovery, back to work after 6 weeks. Then had a big BM at work and I could feel the 'stretch' which many here will know and fear. Blood followed and it seemed I'd had a re-tear of the wound.
What followed was more diltiazem (Anoheal) from the CRS, the baths, the healthy diet we all know and love which brings me to two weeks ago and the latest 'event'.
Before I give details of the event, a few facts…
Since the op 10 months ago, I've lost about a stone in weight. I was a skinny guy anyway, but pretty much all fat and muscle has gone. I do not look good. I want to hit the weights, but obviously concerns over pressure down there. For the last 4 months my diet has gone from healthy to ultra healthy. I eat the following, every single day, no changes.
Breakfast: Shredded wheat + milk
Lunch: Baked Potato + Baked Beans
Dinner: Small port of fish (usually prawns or cod) + Salad + Baked Potato (dressing of olive oil and vinegrete)
Drinks: Lots and lots of water. 3/4 cups of tea.
Treats: Choc bars which are quite 'wheaty'. Lately have tried more normal chocs when I want to have a real treat, seem to be fine.
Since this seems to produce (mostly) trouble-free BM's, i've stuck with it. I miss meat quite a bit, but I tell myself it's worth it.
I have two BM's a day, like clock-work. I don't seem to have the space to store a full day's worth and frankly, I'm terrified a large BM will tear things up down there.
So, the event.
Two weeks ago, I had a large/hard BM for no obvious reason. There was a bit of blood and pain (my old friend!). Blood lasted for two days with BM's, then went. Continuing with the diet and back to the diltiazem (Anoheal) cream and baths seems to have made it go away. Then this morning, another large BM gave me the feared 'stretch'. But no blood, so seems to have held out.
And basically, that's me.
Problems down there have completely taken over my life at this point. I live in constant fear of my next BM. The diet that seemed to have caused trouble-free BM's seems to not always work, and now I'm fearful that a return to 'normal' food would cause immediate problems. I can't make any sort of plans in my life, the thought of holidays, dating or anything normal just raises fears. Ultimately I fear a complete repeat of what's gone before.
What I'm looking for is a long-term solution that works for me. I don't want to rely on meds like laxatives just to live, and a past experience tells me that would be a real disaster for me (long commutes, lack of toilets, bad experiences!) . I can't improve the diet more (I don't think) and should really be moving to a more 'normal' one.
It seems my body is just 'tight' down there (i've seen a few CRS and they all agree basically am small in that area) which causes problems. No CRS will recommend LIS for me as currently there is 'no problem', just the knowledge there will be one soon enough, and LIS scares me for a number of reasons. I'm also not sure it would even work, as my problem seems to be the whole area is tiny, not just the muscle part that would have the surgery, and I don't think there is a 'make ass bigger' op. Something to 'lube' me up down there might be an idea, but what could I use for life-time use that would work and have no side-effects?
I've effectively lost a year and a half from initial concerns to today and I want my life back!
Haven't mentioned but obviously depressed about my situation, gone from being a 'normal' guy (albeit with a fissure that brought tears to my eyes every time) to a man living in fear, genuinely a shadow of my former self.
All advise appreciated, though as i've said, i'm not looking for laxatives (or anti-depressants).
Thanks all.
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby AFalumni » 19 Jul 2012, 08:21

I was a life long sufferer of constipation (from childhood on). A doctor recommended Miralax. It's a stool softener that speeds up the bowel so that the waste doesn't get stuck and have time to harden. I only take half a dose every night and wake up to a nice BM each morning. Even though you are against laxatives, this is approved for lifetime use with no problems. I highly recommend you try it. Start with a partial dose and see how it goes... What have you got to lose?
Furthermore, I would try other fiber foods to offer a change in diet. The internet is chock full of ideas. I make a great smoothie with raspberries and bananas. Avocados are full of fiber. Do you eat guacamole in the UK? It's delicious. I typed in "high fiber recipes" on the Food Network site and it had some good stuff. Just aim for 30g or so of fiber a day.
The biggest tip of all? LOTS of water. If you eat more fiber, but don't drink enough water (at least 64oz.) it will constipate you even worse.
I will eat like 1/4 a hamburger, or a small portion of lasagna, etc. but make sure the rest of my day is good eats. I have found it works for me.
I am so sorry to hear of your frustration/depression, but I totally get it. I have definitely been there. This is a life changing condition, for sure.
I wish you all the best! Try that Miralax (or whatever it's called in the UK). It's so worth it. It's just a powder you mix in water...no real taste or texture.
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby NeverEnds » 20 Jul 2012, 03:53

Thanks for the words AFalumni,
I guess I'm not up for laxatives for a few reasons. In the past I've had really bad experiences with them, like, nearly soiling myself in public bad. If I understand right, they're really only for when you have trouble staying regular with your BM's. To date, this is the only area I have no problem with! I never get constipated (thank god!).
On the few occasions I get hard/problem BM's, it doesn't seem to be because it's had time to become hard, it just seems to be that way, if that makes sense?
I do drink massive amounts of water, I think any more and it'll be dangerous!
I am planning on a more varied diet - I forgot to mention avocados! I have them too at the moment. Really it's chicken and meat I'm not getting and maybe small portions to start with won't be so bad, it's just the fear!
I think I read somewhere on here someone was recommending vaseline used to 'lube' the area as a long term approach, but I wonder if that has any side effects with long-term use?
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby dan2012 » 20 Jul 2012, 05:16

Hey NeverEnds,
I understand the frustration and it seems that you have tried many things to solve your problem. So I don't know how helpful I can be, but let me throw some ideas around and we'll see if it helps.
You said that you've been mostly (solely?) to the NHS. I have no opinions or experience regarding the NHS since I live in the US, but I've seen other forum members saying that they decided to pay up and see a top private doctor. Hey, it will cost some money, but this might make a HUGE difference. NHS probably is a lot like our average health insurance doctors in the US who want to talk to you for 5 min and then send you home. A private doctor won't be like that, so maybe this is something you should consider at least to tell yourself that you tried it. I've done that in the past for other reasons and it was incredibly worth it.
Another thing which I totally understand is that you seem to have anxiety problems based on your first CRS visit reason. I do too. Actually, it seems that most folks here do, at least after getting fissures! This is a very anxiety-inducing condition, and possibly happens more often with people who are anxiety prone to begin with. So have you considered a psychiatrist or just a general doctor who might help treat your anxiety? I'm not saying there is anything wrong with your head - I'm just saying that anxiety could be contributing for you to be tight "down there".
Last, but not least, I used 2 medicines for the fissure so far, Diltiazem and Nifedipine. Both worked well, but Nifedipine had way less side effects to the point that I wouldn't go back to Diltiazem. Other folks had the opposite experience, so maybe you could consider a different medicine if you feel the Diltiazem is giving you some side effects.
Last edited by dan2012 on 20 Jul 2012, 05:18, edited 1 time in total.
Reason: typos
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby NeverEnds » 21 Jul 2012, 10:23

Hi dan2012,
thanks for responding. You raise some good points, and some things which I've already done but not mentioned.
Regarding the NHS/second option, I've pretty much exhausted that route. My actual NHS CRS wasn't a bad guy and certainly not inexperienced. The NHS has a bad reputation by a lot of Brits (me included) because of the slow service and short amount of time you seem to get with the doctors, but I seem to have been lucky in regards to quality. However, when frustration overtook me I did pay to go private. I ended up seeing the CRS would actually help invent the Diltiazem "Anoheal" cream, a guy who definitely knew his stuff.
His conclusion basically mirrored my NHS CRS - we all heal differently and if there's no issue right now, nothing should be done - although obviously he spent more time with me. He did say a change back to more 'normal' diet could well cause problems, but those should be dealt if and when. Easy to say, not so easy to live with!
It's fair to say at this point the anxiety is a problem, though I don't think a psychiatrist can help as my problem is based on the fear of things happening and no amount of talking is going to alter that. Luckily I have a close family who I have talked things through with (a lot!) which does help.
I feel torn (no pun intended) between accepting that, right now, I have few symptoms and just "getting on with life" and the fear that the second I do, things will become worse than they are now and i'll regret making a change.
At the moment, I think i'm going to try the following:
• The vaseline 'lube' idea. Not sure if this will really prevent disaster, but it's something I could continue indefinitely (and discretely!) and the logic seems sound.
• A TINY amount of stool softener (Miralax seems incredibly popular here! May need a UK alternative) before bed. Very nervous about this one but hey, if it worked, great!
Right now though, I'll continue with the baths / Diltiazem combo so things quieten down, which - fingers crossed - they seem to have.
I also need to accept i'm very lucky compared to a lot on here who have extreme constant pain. During my 15+ years of pain, at least it was only during the visits to the toilet, not all day long.
Thanks
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby thisfissurecankissmybutt » 21 Jul 2012, 11:34

Keep in mind that going to psychiatrist entails more than just talking. A psychiatrist can also prescribe anti-anxiety medication. It may be worth at least an initial consultation.
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby dan2012 » 21 Jul 2012, 12:22

Yeah, I took anti-anxiety medication before and solved problems that were being pretty much caused by the anxiety proper. While AF are very real, they do cause a big chain of emotional side effects like you are describing.
Miralax is also great because it gives you very high confidence that your next BM will be soft, so the fear you have will likely reduce. I take like 1/10 of the recommended dosage right after each meal to make it work and if you are eating well, you will have regular and soft BMs. I wouldn't recommend taking it the full dose when you try it for the first time, though! Go REALLY slow to figure out the right amount for you.
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Re: Not sure what to do anymore - diet? more surgery? Help!

Postby Sue27uk » 22 Jul 2012, 03:11

Miralax in the US is called movicol in the UK. I was given this after my recent op (never had it before as always used lactulose) and it works well. I was also worried myself about changing but it really suits me, and I have IBS, the diarrhoea kind!! Because of this I only have one sachet a day. I also went to a private CRS, as got fed up of wait times on the NHS, and he picked up something they had missed.I have found this route much better for me, but wouldn't have any hesitiation to go back to the NHS if needed asit was just wait times. The private CRS I saw is also available on the NHS. Regarding the anxiety etc I also got depression last year following all these problems. I asked at my doctors for counselling and went through the NHS, don't disregard 'just talking' as no help. I also didn't want to take meds which is why I went this route. I am surprised as to how much this helped release some baggage from the past. It helped me deal with all my worry and anxiety from this awful illness to the point I can now cope. I rarely have bad days but I know if I do it will pass quickly. Plus I have the option of going back if have any more problems. You may be surprised about what you say, I have a brilliant relationship with my family and talked to them alot but sometimes talking to a stranger makes you more open. Anyway I hope you manage to find a solution, I'm not forcing my view on you here just telling you my experiences! Go for whichever route you feel is best for you :)
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