New, fed up & no faith in doctors.

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New, fed up & no faith in doctors.

Postby Sika » 07 Sep 2011, 15:22

Wow, an AF forum! I'm delighted to find this! Not least of all because I imagine this space will allow me to talk about all my lovely anal issues in a way I can't possibly do with any real-life person :)
So ... my story. Just to set the context though, today I finally got to see a 'specialist' at the colorectal unit and I am frustrated with the length of time it took to get the appointment (3+months) and the outcome of it all.
Let's go back a bit. August last year. Intense pain on passing bowels (yeah, you all know about this!). Blood, etc. After about 2 weeks I went to see a doctor who said it was probably a fissure and would go away in a week or so. It didn't. Around this time I was feeling incredibly ill in other respects - extreme exhaustion, awful bloating, brain fog and so on. So early October I decided to try cutting gluten out of my diet - as well as yeast and sugar (crazy I know). Around this time I also broke my 'quit' and started smoking again. And my symptoms went away. I attributed it to the lack of gluten. I started having minimal gluten, yeast and sugar in my diet over the next few months, but then starting trying to quit smoking again in April and freed up my diet so I could deal with the cravings (the smoking will become relevant later).
As soon as I quit my colon started messing up - awful gas and bloating and cramps. Two days after, the pain started again. I thought oh it's just a fissure again and will 'go away'. It didn't, and my general health just went downhill with similar exhaustion, brain fog, bloating, skin problems etc. Oh, and hot flashes (I'm not even perimenopausal yet). Sometimes I was on the toilet for close to an hour, in tears, profuse sweating. Blood all over the toilet bowl. No constipation though. After six weeks of this I went back to the doctor. He examined me this time and did an examination (despite the fact I was screaming in pain ?! People in waiting room stared at me when I walked out). He said there was no fissure, and suggested I try anusol cream and made a referral to the specialist (the appt I had today). As things just carried on as they had been (with the extra pain of a nozzle in the anus twice a day), I went back to the doctor for more help as my appt was so far away. Another doctor (who actually specialised in proctology - so why didn't the first doctor pass me on to her in the first place?) was going to use the instrument to have a look, but couldn't because it hurt too much - in any case, she saw a fissure that the first doc didn't see. Prescribed me some suppositories (again - these things really hurt!).
Throughout this, I periodically look at my anus. I'm hoping it's okay to say this kind of thing as I imagine people who come here might understand this kind of thing! Now, on a couple of occasions I saw little tiny lump things that hurt to the touch - the stinging I felt. Another time I saw a fissure thing to the side of my anus - when the one the doctor saw had been inside the canal. The pain does seem to move to different parts of the anal canal - but I assume this is to do with how the nerves work? Or, is it possible that over time I've had multiple fissures??
Anyway, I had been sooo looking forward to today's appointment with the specialist. I thought all my problems would be solved and I would have an account of the cause of this and a thorough examination in terms of my history and all my symptoms and so on. Well, no. First of all - and this shouldn't bother me but it does - she introduced herself as a Doctor, but she's not because she is a Miss, so a student of some sort (perhaps advanced, I don't know, but she's not a doctor). The usual questions - started off nicely like I would be able to go into detail, but became increasingly hurried - and then the inspection.
(An aside - do they not realise how hard it is to 'bring your knees up' on those skinny beds????)
She felt my tummy. It hurt but she didn't ask does it hurt and it didn't hurt enough to make me scream so she didn't know it hurt. She couldn't do the examination because it hurt. Okay, this is one thing I really don't get - is anyone with fissures actually able to go through with an examination?? She didn't even look on the surface properly as my GP had once the examination didn't happen. She just said okay then back through here. She prescribed me the cream. Now, I could have gone back to my GP for the cream. I didn't go to all this effort, all the driving, all the waiting, for something my GP could have done. I want - no I need - to know what is going on with me. I want to know if gluten is relevant, if I may have crohns or colitis, if I may have anal cancer?? How do they know it's not any of these things?? She couldn't even look?!
Now there's the dilemma about the cream. I've read about the headaches people get. Beyond severe. I'm terrified of that. The doctor's interpretation: "some people get headaches". No! It's much more than that! A large proportion of people get excruciating headaches - to the extent that they feel like their brain is hemorrhaging, they can't get out of bed that day, and so on. I need to know these possibilities. Especially given how common they are! Plus the blood pressure thing. My blood pressure is already very low (she didn't check it). I have issues with dizziness and things through the hot flashes (I didn't get a chance to talk about these). I'm scared to try the cream.
So what I want to do is to try cutting gluten out again. Just for two weeks. And sugar. I want to see if this helps - as it did last time. But I don't know if it was actually the smoking that made things better that time (it hurries things along, the doctor said). There's still the fact that I don't get constipated.
I don't feel at all satisfied. I don't know if I should have expected to. I guess I'm still scared. When the first doctor didn't see a fissure, this made me panic about cancer and so on. I'm not convinced there's nothing more serious going on. And then there's the fact that in general I feel unwell, like, all the time. And noone listens or takes me seriously. I tried to raise this with the 'specialist' and she said 'well it's to be expected with the pain, bless you'. Um, no this is different. My whole body feels wiped out and the pain, afterwards, isn't intense. Just throbbing, annoying. Kind of itchy. She has no idea what any of this feels like. And I asked her re the bloating and cramping. She said it's because I'm afraid of going to the toilet. NOOOOO! I hate it, for sure, but I am actually pleased when I go as my fear is being constipated, of *not going* and of having to pass a hard stool which I can imagine would hurt like hell. I need to go early in the morning, so I can spent whatever time I need, crying and bleeding and suffering, before I need to leave for work. It's 'subconscious' she said. And it all made me so cross.
More generally, I just feel so helpless about this. The treatment outcomes all seem pretty 50/50 with the cream, and then most of the time it comes back repeatedly. It just seems like a lifelong thing. I hate that. I hate this. I hate doctors who don't have the time to listen, or to even consider the thought that maybe a whole bunch of symptoms may be related (other than all that subconscious stuff going on). Doctors who make you feel like a neurotic useless person. :( Image
I guess that's it for now. There will be more from me. I'm interested in reading more, sharing more, and tracking whether the gluten-free diet does anything before I resort to the cream.
Sika
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Re: New, fed up & no faith in doctors.

Postby Sika » 07 Sep 2011, 15:24

Sorry - forgot to say a few things. First, sorry it's such a long post. Second, the smoking thing I thought might be relevant because of it's association with colitis. Weird that smoking/not-smoking seems to have such an immediate effect one me.
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Re: New, fed up & no faith in doctors.

Postby Guest » 07 Sep 2011, 17:30

Hi Sika,
Welcome to the forum!
It sounds like to me that you may need a colonoscopy. Did your CRS mention this? Then your fissure could be diagnosed and rule out any other problems...
I was gave the option to be examined under anesthesia when I had my fissure by one of the CRS's that I saw. I'm not sure how often that is offered though.
What cream were you prescribed? Nitro is quite well known for giving headaches, but many people really are able to tolerate it- believe it or not AND the side effects can subside over time.
You could also ask your CRS for one of the other ointments such as Diltiazem or Nifedipine if you can't tolerate the Nitro.
It seems to me that you aren't be heard and may need to get more aggressive with your doctors. When they assume something and it's not so, don't hesitate to speak up.It's your body and you deserve to be heard and treated properly!
I'm pretty clueless about the gluten.We had another boardie who says he cut it out of his diet and was finally able to heal after LIS.
Please feel free to vent and ask any questions. There's plenty of nice folks on here and I'm sure they will be glad to help out.
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Re: New, fed up & no faith in doctors.

Postby cherylk » 07 Sep 2011, 18:25

Sika,
Firstly, welcome. I'm glad you found this board which has been a godsend for many people.
My adult son has Crohn's Disease; I think there may be an association of smoking with Ulcerative Colitis. That might be something for you to investigate.
I don't know if you live in the US or not? Many (including myself) used Diltiazem with NO headaches. I used if off and on for many months, and never did I have a headache. I also healed w/o having LIS (using ointment only). Many of the people here have also healed their fissures with Botox. There are many avenues for you to pursue, but first it seems that you need to find a qualified doctor in whom you have confidence. You can learn a lot here because we all have had different experiences and talk openly and share in an attempt to help others. Many people heal from their butt probs and leave the board. Keep that in mind. Good luck!
Cheryl
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Re: New, fed up & no faith in doctors.

Postby jenny2 » 08 Sep 2011, 06:38

sika hi. i think that you should either find a new crs or go to a gastro doc for futher help. i have alot of problems also and have went to a gastro doc to find out what they think it causing my anal issues. my crs says i am healed with fissure but i continue to have alot of problems, so i am going to another doc gastro to help me and he is running some tests.
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Re: New, fed up & no faith in doctors.

Postby val » 08 Sep 2011, 10:15

A lot of us have had trouble with doctors, especially GPs who usually prescribe hemmorhoid creams!
In the UK, I think consultants are known not as Dr. but as Mr., Mrs. ect., so your doc could maybe have been a consultant?
Nitro does give awful headaches - but not so bad that you wouldn't be able to get out of bed! And painkillers do relieve it.
The creams are definitely worth a try as a first defense against fissures.
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Re: New, fed up & no faith in doctors.

Postby Sika » 12 Sep 2011, 05:08

Ah, Val, you're right. So, yes that probably was a 'proper' doc. Weird.
The cream I was prescribed is Rectogesic. I think that's the Nitro cream in the US? I haven't been able to bring myself to try it ... and from what I read here, it seems it rarely helps once people have had them several months. Also, at the moment the pain is not that bad, in the sense that I don't cry! It also doesn't carry on too long afterwards - and if it does, it's horrible but bearable. I'm moving house in a week and have a great deal of work to get done so I'm scared of losing a day through any headache pain. Yes, I know, it'd probably be fine and it's silly not to just try. I also know that this isn't going away on its own, and soon enough I will get to the crying stage again.
My GP initially suggested a colonoscopy right at the beginning - 'once the fissure heals' he said, to see what is going on and check for polyps too. But what the CRS goes it seems. And I can't change or request things without going private which I can't afford.
I'm still working on changing my diet. Great advice here about eating easy to digest food. At the moment I actually have D, which is strange.
Whatever it is, just a fissure or more, I just feel rubbish all the time. It's probably nothing to do with the fissure.
Thanks for the replies, and I'm sorry again for being so rambly and whingy.
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